Prednisone methylprednisone conversion

I get a lot of messages asking about my cancer, so before I get to my story: I highly recommend visiting BCAN.org and asking to be paired up in their survivor to survivor program. Every diagnosis is different and the survivor to survivor program pairs you with someone with similar age, gender, and diagnosis, so you can ask all about their experience. I have enjoyed volunteering with the program and the newly diagnosed that I speak to seem to as well.
My story:
In March of 2020, I was diagnosed with Stage III muscle-invasive bladder cancer. Leading up to that diagnosis I had recurring episodes of extremely painful urination for nearly two years. Not a drop of blood in my urine. The episodes were becoming longer and more frequent. I had urgency and an extreme pain that had me calling out sick from work. It was pure misery and by the time I was diagnosed it was actually a relief.
The test I urge anyone reading this to get is a urine cytology. I am not a doctor and this is not medical advice. In my experience the urine cytology saved my life. It's a cheap "pee cup" test you can get at any urologist's office. More info here. My easy to remember rhyme is: if it burns when you pee, get a urine cytology.
Up until that test, doctors had been meandering down a path that was not focused on cancer. I was 33 years old (37M now) and due to my young age they didn't consider cancer. I had been in some mountain bike accidents with pelvic trauma so I was misdiagnosed with Pudendal Neuralgia. Symptoms matched but the treatment offered no relief.
I did my urine cytology. 15 minutes later "Atypical cells" led to a bladder scope and I was looking at my tumors in the urologist's office. The tumors were biopsied and I was scheduled for TURBT. This is where my stage III diagnosis was given. I felt immediate relief from the painful urination after tumor removal. The tumors were pressing on my ureters so it felt like kidney stones all the time. We immediately started chemo and my doctors began telling me I would lose my bladder. I did MVAC chemo for four rounds over the summer. This was very intense: what you think about when people say chemo. Lost my hair--gained weight which is not uncommon--and overall felt like shit. After that I was given a few weeks to recover and then had a radical cystectomy with neobladder diversion in August of 2020. This was not an easy decision but the prognosis was best. I tend to trust the data.
SHOUTOUT to my medical team: Dr. Bupathi & Dr. Monticelli of Rocky Mountain Cancer Centers; as well as Dr. Shandra Wilson my urologist and surgeon. Their skills and expertise assuaged all my concerns and made me feel so confident. THANK YOU SO MUCH. For those reading: get a good team; ask lots of questions; and don't be afraid to get multiple opinions. I keep several journals, which help a lot and I'll detail that at the bottom of this post*
Recovery from the neobladder surgery was the hardest part. I had a foley catheter and "grenade" for six weeks or so. My cath bag looked like a bag of red wine due to blood. They walk you around a lot to recover faster. It involved a lot of bed-rest intermixed with short walks. I think I was out of the office for at least a month. I am in generally very good physical shape and even several weeks after this procedure it was hard to walk more than 1/4 mile.
From there I thought I was cancer free. I lead my life with my family**. Here is what saved my life again: Signaterra testing. Dr. Bupathi had these tests scheduled every six weeks. It tracks genetic cancer markers in your blood. The test results look like the stock market except you want it to go down. After several months we noticed it was rising again. We ordered a PET scan, found enlarged lymph nodes, and determined my cancer had returned (or never left). I began a second chemo regiment followed by immunotheraphy (that I just completed yesterday!!!). CisGem chemo was quite difficult. The C in MVAC stands for cisplatin and it's generally one of the hardest drugs to tolerate. After a few difficult rounds we switched to carboplatin and it became much more tolerable. After that I did two years of Bavencio/Avelumab. My Natera test results showed that my cancer had dropped to untraceable levels during chemo, so I effectively beat it before starting the PDL1 inhibitor therapy. However, my team strongly encouraged me to complete the immuno. To me, it felt like putting out a campfire: add water, stir, add water, stir. You gotta make sure it's really gone!
The bavencio PDL1 therapy caused me a lot of mood swings and sometimes caused immune system flare ups (i.e. "immuno flu"). For the physical flare ups I used prednisone, as needed. I tried to do so sparingly as it basically cancels out your treatment. The mood swings were the worst. I would often be despondent and depressed for a few days after treatment. Other times, I'd feel no mood alterations. Most often, I'd be extremely irritable for about a week after treatment (treatments were every two weeks so it was very difficult).
I'm now two years cancer free and beginning my recovery from the immunotherapy treatments. I am so happy to live in an age of modern medicine. Within my lifetime many cancers will become manageable diseases--it appears to me that bladder cancer already has. Reach out to BCAN support groups and DM me if my post didn't answer a question of yours. Good luck! You got this!
*Journaling helped me tremendously. I had three journals (google docs). The first was an overall journal detailing my doctor visits. The second was a symptom journal. The third was an insurance journal/spreadsheet. The first journal served almost as a blog, which I shared with close friends and family. That way I didn't have to have the same conversation over and over. It's nice to have family and friends interested, but it does wear at you when you have to tell the same doctor visit over and over to people. This cut down on those discussions and allowed me to have more enjoyable calls with well-wishers. The second journal I would write down daily side effects and 1-10 pain scales. This was extremely important because I could bring it up with doctors and I wouldn't have to remember how I felt, I could look it up. It also helped me understand insidious side effects that take months to reveal themselves. This was the most important journal and kept me sane. There are soooo many side effects and when you start a cancer treatment program you often have no choice-- so why read them? Well this journal would help me understand when something was a side effect. Often just knowing that it wasn't you it was the drug would have a calming effect. The third journal was so I could fight insurance and get what I deserve. Insurance companies try to reduce payouts through exhaustion. They want you to give up. By documenting your experience you give yourself ammunition when you have to escalate a claim or file an appeal. You have everything laid out in an organized manner. You can get it out of your head and onto a spreadsheet so that you don't think about it when you go to bed at night. I had to file appeals several times, sometimes with Colorado Division of Insurance and my record-keeping was a tremendous boon to my case. Don't pay a bill as soon as you get it! Wait until you get the claim record from your insurance company and make sure the number on the bill matches what the insurance company told you to pay. If you cut that check wrong, you'll seldom get that money back!
**Neobladders do not have musculature like your normal bladder. I had several very severe bladder infections--a few that led to hospitalization. During the first 18 months or so, I was not catheterizing becuase I was under the impression that my new bladder worked. I peed constantly; however, I was retaining over one liter of urine at all times. This urine kept becoming infected and putting me in miserable situations. Under my urologists advice, I began cathing and immediately felt great. I lost nearly 10 lbs in "water weight" and no longer have any urgency issues. I can sleep through the night, but often will cath around five hours into the night just so I can sleep in later. On average I cath about once every three hours. It's not painful when done correctly. It's honestly just tedious. However, after all of this the only way my life is abnormal now is my cathing. I can swim, climb, play with my son and do any physical activity; it just takes longer to pee now. I'll take that win!

Patient Profile:

• Patient: MB; Age: 60 year; Gender: Male
• Weight: 85 kg; Height: 5 feet 9 inches

Clinical Information:

• Diagnosis: Asthma
• Allergies: Penicillin

Home Medications:

• Albuterol inhaler (90 mcg/puff): 2 puffs Q4H PRN
• Budesonide/formoterol (Symbicort) 160/4.5 mcg: 2 puffs BID
• Montelukast 10 mg PO daily

Hospital medication

• Dexamethasone 1.5 mg PO BID for Asthma Exacerbation

MB's physician wants to convert him to an equivalent dose of prednisone PO, with options for either BID or TID dosing. Which of the correct conversion for MB's current dexamethasone regimen?
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Byand a couple days later I end up in the psych ward because you know I get diagnosed with illness that I can’t control you. You know I don’t know what’s gonna do to me tonight tomorrow maybe later on today the point of this rant so I believed that I was having a flareup last week early in the week so I took prednisone every single day for five days and that much help with my balance. I’m wondering if maybe I have a new lesion because my vision has been getting worse. My ears have been getting worse, so my hearing has been getting bad. You know my memory is getting really bad. I spilt milk the other night and I don’t even remember that part. My partner was telling me about it and I know she wouldn’t fuck with me like that. What do you guys think? It’s a potential relapse or was it just a flareup that didn’t go away from the prednisone? I appreciate any answers as I’m still kind of new to this. I am 20 years old and you know I don’t live the life. I used to such a boring life now I did. It’s beyond boring. I have no idea. well actually. I do know why that I live a very boring boring life as because my self-confidence is taking a very bad hit since I got diagnosed with multiple sclerosis. I just need to know. I need recommendations for mature people who are not gonna try to sell me Matilda’s magical every thing cure m l just want not biased in the conversation. I took the prednisone and it had made it me having more problems in

24 (F)
Hi all,
I was diagnosed with lupus and then CKD lupus nephritis in 2017 and have been on hydroxychloroquine since then (prednisone 1-2 times a year when I have a bad flare). My lab work over the past year has shown protein and blood in urine.
At my most recent appointment I brought this up to my nephrologist and asked why he didn’t seem concerned when both the protein and blood was on an upward trend. I also brought up that my C02 has been low (16-20) for the past year, anion gap high/borderline high (14-17), and chloride trending upward from 103 to now 108 (metabolic acidosis?). Another thing to note is as my chloride has increased my anion gap has slowly decreased from above range to right inside the range borderline.
He said we can do a kidney biopsy if I want but he doesn’t think it’s absolutely necessary because my albumin and PCR is normal. I had an ultrasound 6 months ago that was normal.
So he basically left it up to me. It’s concerning to me to see this upward trend in my labs, so I went ahead and decided to schedule a biopsy for next week. However the entire conversation left me confused, and now I’m wondering if I should cancel the biopsy. The way my nephrologist spoke, I ended up leaving the appointment feeling embarrassed for even being concerned in the first place.
I would love some advice. My gut tells me to get the biopsy, but my nephrologist made me feel like I was overreacting by asking these questions. I obviously don’t want to start sticking needles into my organs if it’s not needed, so I’m not sure what to do.
Lab specifics:
My UA protein is currently at 100mg/dl and was first elevated at 30mg August 2023. Before August it had always been “trace” or none.
My RBC UA is currently 10-25 hpf and was 3-5 last August. Prior to August it was always 0-2
PH: consistently 5.0
C4: normal
C3: normal
DsDNA: current 71.6 (negative is under 27). Last year my dsDNA was 32
BUN: was consistently 10 before August 2023, has been consistently 7 since then (still in range).
Symptoms:
Only symptoms are increased fatigue and having to get up and pee 2-4 times a night which is new within the past 3 months.

Hi all - thanks in advance for any comments that come through; I know this is a long read. I've been referencing the IVF Reddit thread for a while but this is my first post. I'm struggling and have seen such thoughtful advice on other threads!
I started ttc in 2022, and after 6 months my obgyn referred me to get an HSG. The (incredibly painful) procedure showed no blockages, and in our next cycle, we managed to conceive - but it turned out to be an ectopic, which ruptured in September 2022.
During the lap for the rupture, the surgeon noted endometrial lesions throughout my pelvis. I'd never had symptoms for endo, so this was a surprise to me.
We paused so I could recover and in April 2023, we saw Dr. Carrie Wambach at RPMG in Los Angeles who did a saline ultrasound. She determined that my remaining tube was blocked and IVF would be my best option. We did our first retrieval in July, resulting in 10 eggs and 4 euploids (4AA, 4AB, 4BB, and 3BC).
Dr. Wambach then recommended I do an ERA, followed by Lupron Depot to suppress the endo prior to a transfer. The ERA showed that I was on the cusp of post receptive, so my RE adjusted my progesterone timing accordingly. Next, I did 2 shots of Lupron Depot over Sept and Oct 2023, but the transfer was unsuccessful.
For next steps, we were advised to do another retrieval with a Lupron protocol to extend the suppression, and go straight into an FET. The new protocol yielded 17 eggs but only 1 euploid (4AA). The FET, timed with the retrieval cycle, failed again.
At this point, my RE recommended a hysteroscopy to make sure there were no physical obstructions. I also did an HSG to rule out hydrosalpinx, and another endometrial biopsy to rule out any infections. (Interestingly, the HSG showed my remaining tube as having no blockage.)
Dr. W removed a very small polyp during the hysteroscopy, and then we went into our third transfer on a kitchen sink protocol (progesterone suppositories and estrogen plus baby aspirin, prednisone, lovenox, pepcid, claritin, and an intralipid infusion 2 days before transfer). My beta came back just under 3, perhaps signaling a CP.
At this point, we have our 4AB and 3BC euploids left. For next steps, Dr. W recommends a laparoscopic to excise any endo before a 4th and final transfer attempt; if that doesn't work, she would consider all experimental treatments to have failed, and recommend going another route (aka surrogacy, which I'm honestly not sure is financially feasible for us right now).
I met with another RE (Dr. Hubert at Fertility Associates) who had a very different opinion: He said he would *not* recommend another retrieval, Lupron Depot or a lap at this point, and instead, would do an LH-timed transfer with our 4AB. This approach is appealing to me, but I'm also concerned that evidence is mounting that I cannot carry - between the ectopic and 3 failed transfers, I'm worried that something is not allowing for implantation in my uterus.
Very long post, but I'm just so curious to hear from anyone else who has been in a similar position, and I have so many questions: Does it sound like I should switch doctors at this point? Does anyone have any positive (or negative) experiences after a lap? Any other recommended LA-based doctors I should try to get an opinion from? Anyone else had conversations with their doctors about different endo treatments? Anyone with endo had an LH-timed transfer work (without Lupron or other interventions)? How many transfers before your clinic told you to stop?
Thanks again - and strength to everyone going through this.

34F, 165lbs, 5’8
Epilepsy/cavernoma, IBS, PTSD
Regular meds: lamictal for epilepsy and sertraline for mood
Meds since surgery (5/2): took a couple oxycodones the first couple days, none since probably Sunday. Have had 1 mg Ativan as needed since 2 days prior to surgery. Currently also on iron pills and B complex due to post surgery anemia
I’m 9 days post total hysterectomy, done laparoscopically. Day 5 after surgery, I started breaking out in a rash all over my abdomen.
Tuesday: Rash started. Went to gyn, she prescribed steroid cream and antihistamines.
Thursday: rash worstened/spread to arm and face, gyn called in methylprednisone.
Friday: rash was still spreading despite starting methylpred the day prior, so my (amazing) gyn got me in with a dermatologist, and she said I probably have contact dermatitis with ID and put me on a prednisone taper.
Today: woke up with my eyes swollen because the rash is now around my eyes, left arm, and abdomen. Started 80 mg prednisone this morning.
Tonight I’m still itchy, my face looks maybe a little better but eyes are still itchy, my arm is still popping up with more little hives (and extremely itchy), and my abdomen is still covered in the rash but it is less itchy than it was.
I’m wondering why such a high dose of prednisone hasn’t stopped this rash from spreading/stopped the itching? I know I just switched from the methylpred to the pred this morning (about 15 hours ago), but I thought prednisone worked pretty quickly, and I haven’t noticed much of a difference.
I’ve read about the DRESS rash, and I’m worried about that. Could that be what this is? Or is it probably just contact dermatitis and meds need more time to work through my system?
Can post photos of progression of rash if needed.
Thank you.

I 43f, 5'3, 130#, have been experiencing these incredible pain bouts for over a month. History: I am healthy, exercising 1.5-2 h/ day at the gym - warm up with a 5k run or equivalent on stair climber then lift, climb, do HIIT. I drink (well, drank) lightly, average 4-5 drinks/week. I work a technical, multi-facted job that requires my brain. I have a history of migraine so take daily magnesium and ubrelvy as needed for abortive. Also take 75mg levo and 1000iu vitamin d (dxed Hashimoto's 16 years ago and low vitamin d 13ish years ago).
I had experienced something like this 4 years ago, which started off as pain then moved to tingling on my face. MRIs didn't show anything to speak of. Pain was limited to face area only. Neuro at the time was annoyed I didn't get enough root cause done at primary care, so this time I wanted to get this right.
Recently: my menstrual cycles have gone completely haywire, from 23-30 day cycles to my last 3 being 18, 21, and 13 day cycles and my breasts are tender for 10 days at a time. I had noticed some hot flash symptoms last summer but these were alleviated by watching my alcohol intake and exercising more. I have also noticed it extremely difficult to lose weight lately, not necessarily watching the scale but the extra 10# that I'm carrying around my midsection and hips. Like I said I'm very active, have run half marathons, triathlon, competed tough mudders, and I know how much my body should be carrying (I have honest conversations with myself about calories in/out). Maybe this stuff is related to my current situation, maybe not.
Current situation: about a month ago, one night after skiing (moguls all day) I was going to bed and noticed some pain on the left side of my face and asked my husband for Ibuprofen. Next morning, it was gone but on the drive home midday it came back and I couldn't talk until it passed. NP I saw blew off these at my annual at day 4 of pain, as "you're in your 40s, look online for perimenopause information, and you have trigeminal neurologia - I'll prescribe you gabapentin". I'm like "do we try to find a root cause for my pain?" And basically the answer was "no". (See note about my previous neuro above). (Another side note at this appt my annual my blood work was run and all came back perfect, fasting and all).
Anyway, I left that office without the gabapentin to see if I could ride it out. Maybe this was a temporary, weird thing.
Pain episodes got worse. Often they start behind my jaw/under my ear and are accompanied by excessive salivation. Sometimes I feel like I got punched in the throat on my left side. Sometimes I feel like someone is drilling a chisel through my cheek into my brain. Sometimes I feel like I got hit in the face/jaw with a 2x4 wood plank. The standard trigeminal "dental pain" is so intense I cannot speak and generally involves my parotid. The other day I put on mascara and it felt like I was poking spikes into my eyelid. I get tingles on my face, scalp, down my arm on my chest.
What I've tried: I saw my dentist to rule out TMJ and dental causes. I saw another dentist to rule that out again. I saw my eye doc twice because I feel inflammation around my eye and my contacts were becoming uncomfortable to wear and I had to take them out midday. Eye doc can see corneal inflammation that is different than allergic inflammation. I changed contacts, switched them out for glasses. No change.
I asked for a shingles test and antivirals (on recommendation from an NP friend as something to try), which two docs sort of messed up, that is I finished a 1 week trial of 5/day 800 mg acyclovir before I got a shingles IgM results back, negative. I have never had herpes virus in any form including cold sores.
A different doc at that office, a DO, who had been my primary care previously, tried a 5 day trial of Prednisone about 10 days ago. At this appt I was getting a pain flare at check-in and my bp was 136/100. It is normally 100/60. I called that pain 8/10, where it was hard to talk.
I took 50 mg for 5 days which turned out knocked down the pain but did not eliminate it. I think it was around this time my neurologist (a different one, all the docs move around so much) called in gabapentin. 300 mg, to increase over time. I had been messaging that DO doc about possibly extending the Prednisone until I got to my next appointment (neuro), but then he went on extended vacation, my pain returned level 9/10, the covering doc wouldn't extend or taper the prednisone, and I cried more on that day, partly out of panic at the pain level, than I had in the past several years combined. Hope I don't have to do that again. Did I mention I have a job? Good thing I have an understanding boss, who I'm married to. My neurologist, who I was in contact with, said they didn't feel comfortable prescribing more Prednisone but started me in carbamezapine.
So I'm currently up to 1500mg/day gabapentin and 200mg/day carbamezapine. I still get significant breakthrough pain episodes - yesterday it was a from about 9:30am -2pm with only an hour break. My typical evening pain episodes were alleviated by bourbon, to which I have become quickly accustomed to drinking neat (but only in the evening, and only more than on drink on weekends).
IN PARALLEL to all this, I saw my neurologist in March for my annual ubrelvy script, and she told me an MRI last year picked up a thyroid nodule that should have been flagged and followed up on. Oops? I got the follow up u/s about 3 weeks ago, in the midst of this pain situation, and it was confirmed to have grown from 1 to 1.5 cm, is isoechoic, and there is mild hyper vascularity in the area (glandular parenchyma). My primary care DO doc had said it is not related to any of this pain situation, but put in a call for a biopsy - he also said since I had imaging done last year I didn't need it again.
Biopsy was this Wed. The pain I felt during the biopsy was exactly this "punched in the throat" pain that I have been, and am still getting. I was a mess most of Wednesday after that biopsy, it was so, so painful. Results still pending.
I have asked for an ENT and Endo referral. I have asked for endocrinologist referrals for the past couple years (I moved here 5 years ago and used to see an endocrinologist once a year. The endos here are so few and overbooked they don't see hashi patients). I did see my neurologist last week who wants to image the area, including my neck.
Currently, I still go to the gym. My threshold has gone down both in max weight and cardio push, but I am guessing that's because I'm heavily medicated on the gabapentin and carbamezapine. What actually helps the pain the most, instantly, is whiskey, which I don't feel is an option most days that I need to function/work/drive, but it was nice to enjoy a Friday night pain free for several hours (I hydrate/electrolyte during my drinking, and have not been really hungover).
What am I missing? What should I ask at these appointments? Thanks for your input. I know this was really long, but it's been a wild ride and it's miserable and not over.

I know this long and not along the funny lines. But I need help raising awareness to make it easier for people like my brother and his wife to get help with IVF. It’s so expensive and insurance doesn’t always cover it. They recently tried to win votes in a contest for $5000 toward the $30000 IVF costs. Sadly they lost. Due to the contest not having caps on people voting more than once. Two of the winner already had a child and the other had insurance to help cover it. This is their story below. My guilty part in this is that no matter how bad a feel for them. All I want is to be an aunt. My kids grew up being the only ones in the family and it makes me so sad to not have all these children for me to spoil and love. Charlotte please help me spread the word on infertility. I just want to be an aunt so bad and I can’t believe money is what’s stopping us right now. I’m holding bitterness in my heart that I haven’t been able to be the amazing aunt I will be. But the real heartbreak is my brother and his wife.
“The struggle to be happy and grateful while you feel like the world is passing you by, waiting for your turn when you want something so badly - it’s indescribably hard. It’s isolating and lonely, even when you have a support system to lean on and lift you up. Recognizing you’re not alone doesn’t fix the heartache or take away the anxiety, mental exhaustion, mood swings, side effects like weight gain, hair loss, migraines, nausea or bruises on your belly from all the shots.
You dare to be hopeful, again and again and bargain with yourself over all the things you could be doing differently or better or more or less. Infertility is the hardest full time job you’ll ever have - you don’t get paid for it, but it’s all consuming and no matter how hard you work, you’re not promoted to the only title you actually want, “mom and dad”. All the love you have to give has nowhere to go, and you often spare others’ feelings rather than share how it affects you every day.
Infertility can tear you apart - it’s cruel and unfair. It’s a roller coaster of emotions and you never know when the next drop or turn will come. It’s draining - mentally, physically and financially. But infertility can also show you how many people are willing to fight with you and for you, you just have to let them in. We build our walls so high to protect ourselves we forget that the cracks let in sunlight and that’s where love grows and heals.
Sharing something so personal and private is tough, but so is infertility. Suffering in silence is even harder. We are in awe of the support system that has shown up for us and we are beyond grateful for the outpouring of love. Everyone who has liked, commented, posted, shared, voted for us to receive funds, prayed, hoped, asked, messaged, reached out, sent a positive thought or good vibe our way, THANK YOU.
The intent behind the generous “Fertility Diaries” giveaway from The Fertility Center is increasing awareness, especially this week. We are hopeful to be in the running to receive $5,000 toward our treatment, which would make such a difference for our family. If you have voted or continue to, we are very grateful and fortunate to have the support.
I read a quote that inspired me to step out of my comfort zone in hopes that even one person suffering in silence can see all the good that comes from letting people in. To honor National Infertility Awareness Week, for those interested or wondering if there are different approaches out there that may lead to answers, here’s our 3.5 Year Ongoing Journey (it’s a long one).
In 2018 after unexplained recurring and worsening pain several doctors I had seen dismissed, a new doctor asked me if I had ever heard about endometriosis. She explained that she had a hunch endo was the cause of the pain I was experiencing, but that the only way to diagnose definitively was with surgery. We got scheduled and the pain worsened quickly. It became so severe that I was bedridden for a month - confused as to what was happening inside my body. I had to quit my job and was struggling while Pat flew missions for the US Air Force, gone for weeks at a time.
I had surgery, anticipated to be diagnostic and fairly quick, but based on the abdominal scope the doctor found pretty severe endometriosis and several cysts that needed to be removed. My husband made the decision we discussed ahead of time to extend the surgery and remove all of the cysts and endometriosis present. What was described to me as routine and something most people recover in a couple of days from, was not what I was experiencing. I was still having trouble getting out of bed and walking around on my own after several weeks.
Post-surgery I was told the doctor saw a presence of over-active nerves and she attributed the severity of the endo she removed and the overactive nerves to my longer recovery. She gently mentioned that if we planned to have children we should consider bumping up our timeline to the next 1-2 years, but I thought of it more as a passing comment (insert regret). I was 25, newly married and not ready to think about babies yet. I wish I asked more questions then (hindsight).
To keep the endo from returning, I was put on a low dose birth control. I was pain-free for about 18mos. before I started noticing the familiar feeling creeping back in. We had relocated to Grand Rapids and I researched an OB/GYN that treated endometriosis. Their suggestion was to try a drug called Orlissa, which puts your body into a temporary medical menopause to “starve” the endo of estrogen it feeds on.
The side effects were wicked. I had hot flashes you could see coming on from a mile away - my whole body turned purple. I wasn’t sleeping and before long I had dark circles that looked more like black eyes (SO much concealer). I had just started a new job, so these symptoms at work were embarrassing and not something I felt I could talk about openly. I lasted 6mos. before throwing in the towel, but the endo pain was gone. I was no longer triggered by certain foods (gluten and chocolate) and started to feel more like myself again.
I was referred to a new doctor by a friend shortly after - this office is application only and specializes further in endometriosis. Fast forward to 2020, celebrating our 3rd anniversary and deciding to casually start trying for a family. Given my history, we were hopeful but involved our OB/GYN after 6mos. who suggested we do a second laparoscopy to check for endo and perform the HSG (tube test) while I was under anesthesia.
To my surprise waking up from surgery a second time, I got the great news that they did not find any returning endo and my tubes were open! We started Clomid and kept trying, hopeful this would do the trick. We doubled the dose and did some baseline testing, but ultimately reached the end of the road for treatment with our OB/GYN after 6mos. (a year in).
We were referred to The Fertility Center and began a new protocol with Femara, which my body didn’t respond to. My husband was tested and everything came back fine on his end. We were introduced to a laundry list of supplements and FSH injections - and as a person who was terrified of needles (broke out in a sweat just mentioning the word) I was less than thrilled and needed friends and (eventually) my husband to do the injections.
FSH injections require closer monitoring, so we became very familiar with the ultrasound machine and (you guessed it) more needles! Monthly blood draws. With several medicated cycles, my body adjusted sporadically. There were a few months we missed ovulation all together and had to wait, which meant a lot of sunken cost with nothing to show for it.
I started acupuncture after reading about the benefits online and finding a local clinic that offered fertility-focused packages including IUI and IVF support. Talk about exposure therapy for needles! I felt the calming and de-stressing effects immediately and still go every 1-2 weeks, 2 years later. I’ve taken the advice of my acupuncturist over the years with supplements and have learned more about balance.
We tried IUI twice, our second procedure our levels looked really great and we were so hopeful. After 6-7 months, I needed a break. Mentally I was not in a good place so we took a month or two and decided to start IVF in the new year. After talking with a friend, something their family member did to conceive really stuck with me.
This friend told me of someone in their family who needed their partner’s sample to be immersed in their bodily fluids before transferring in order for her body to recognize and not repel for being foreign. Then a lightbulb went off - my entire life my body has repelled anything foreign; tubes in my ears multiple times, all piercings, even an IUD.
We pushed for more answers before pursuing IVF and were referred to a doctor that some in the RE world would consider “experimental”. Dr. Derbala from Derbala Institute for Reproductive Immunology (RI) is one of less than 5 in the country practicing this approach. After extensive testing (25 viles of blood, an hour long internal ultrasound, hysteroscopy and uterine biopsy while awake and unmedicated - triggering trauma) a few genetic mutations believed to contribute to inflammation and implantation failure as well as over clotting of the blood were found.
We also discovered my blood contains much higher than normal levels of NK cells and anti phospholipid antibodies - in short terms, my immune system is an overachiever and is overactive. We have worked for over a year now with varying aggressive medication protocols, including immune suppression.
With monthly blood draws to monitor my immune levels, we were tweaking the medications to address the ebbs and flows of different markers. Traveling for work during this time forced me to conquer my biggest fear - administering my own shots. We were hoping by treating the underlying issues we would conceive on our own and not need more intervention.
Due to worsening side effects (increasingly frequent and debilitating migraines, nausea, dizziness, fatigue, prednisone withdrawal, weight gain, hair loss, extreme bruising) we decided that IVF is necessary to control the medication timeline and condense side effects.
We had consultations with 4 fertility clinics in the surrounding areas and learned a lot of abbreviations along the way (IVF lingo). Our insurance does not cover any fertility treatments or medications. After 3.5 years and over $13k out of our savings with nothing to show for it, we are investing in IVF out of pocket. The financial uncertainty with IVF is daunting, all for the chance to conceive with no guarantee.
It’s difficult to choose the right fit - financially, geographically and to feel well taken care of and understood by your providers. We are hopeful that we have found a great team of doctors to help us conceive with The Fertility Center and Derbala Reproductive Immunology.
We realize the next few months through the IVF process will be challenging, but we will have an uphill battle ahead of us if we find success with IVF. According to predictions based on all of the immune testing, we will likely be classified as a high-risk pregnancy with weekly monitoring throughout. It’s been a blessing to have transparency with next steps, but like so many facing infertility, the outcome you want so badly is also ironically the scariest outcome you can imagine.
There are deep scars from this process that no one sees - mine are still healing slowly and sometimes old wounds can re-open. Every pregnancy announcement on social media, someone innocently asking if you want kids or when you’re having kids, birthdays and holidays that feel empty, the parts of your body that feel traumatized and the disassociation with discretion you experience to name a few.
We are grieving the people we would have been if we had not gone through this struggle. We are grieving the memories we could have made with our grandparents and parents having great/grand babies. We are accepting that our dream of our kids being in the same class as our friends’ kids isn’t going to be a reality. Those are tough things to let go of.
We are leaning on our system of support and taking this one day, one step at a time. I feel lucky beyond words to have my husband Pat Schmidt, who picks up the slack when I’m tired or sick or sad (which is more often than not lately). He’s affected in all of this too, but he’s holding it all together for us and I’m toughing it out for him. He will be the world’s best dad and I can’t wait for that day. The supporting role doesn’t ever get enough of the credit.
If you’re still reading, thank you. Being part of this conversation is helping remove the stigma associated with infertility little by little. I’m hoping that by being vulnerable enough to share our very private struggle, someone else will feel empowered to seek answers, speak about their experience and let their support system help carry some of the weight infertility burdens 1 in 6 with.
With National Infertility Awareness Week highlighting such a vulnerable part of our lives, we are thinking of all those struggling - you are brave for continuing to hope and fight for the family you deserve. Continuing the conversation is an important piece in validating all of the resilient couples out there who’s every day involves infertility. We are stronger when we uplift each other.”

Hi all,
I've been on PD since December - CKD due to IgAN diagnosed in 2004 - and my hearing has been steadily deteriorating over the past year. I first noticed some hearing difficulties last summer while on prednisone in a last ditch attempt to save my kidneys but it wasn't until I needed to start dialysis that the hearing loss became pronounced. It's been progressively getting worse with each week and I finally got around to getting a hearing test last week where I was told I have moderate to severe hearing loss, with severe loss in the higher frequencies above 1500Hz. I have another appointment to trial some hearing aids next week as I can no longer make out any conversations and need to ask people to repeat themselves constantly. Listening to music sounds as if there is mud in my ears.
Has anyone else experienced this with IgAN or other kidney disease? Other than Alport Syndrome where it is a known symptom of course. My nephrologist doesn't believe it to be related but Google seems to suggest a relationship between hearing loss and CKD. I just wanted to get an idea whether this is a common experience or if I'm just unlucky here with coincidental hearing loss.

Was diagnosed with eosinophilic asthma two years ago and have been wheezing&coughing ever since. 9 months ago I was put on Nucala and only saw results for the first two months after which it had no effect. Have been taking prednisone daily for a year and a half and I'm definitely feeling it's effects. I'm currently on 5mg daily, but that means I'm practically unable to exert myself physically in any capacity. I will track my progress here and hopefully I'll begin to feel the benefits of benralizumab sooner rather than later. For context: I'm a 21 year old man and my peak flow reaches 610-650 when I'm feeling well. I'm currently on relvar, spiriva respimat, montelukast, avamys, prednisone 5mg and omeprazole.
Day 1: Peak Flow is at 340. Have been injected with Fasenra and I'm feeling 0 side effects. Currently coughing, wheezing and producing colourless phlegm. Unable to physically exert myself in any capacity without exacerbating symptoms severely.
Day 2: Peak Flow is at 350. Still symptomatic to the same degree as yesterday.
Day 3: Peak Flow is at 380 which is good. Still symptomatic but definitely more comfortable.
Day 4: Peak Flow is at 400. I'm unused to seeing my numbers go up like this without steroid usage, more often than not they only go down. I'm remaining cautious as I don't expect to be seeing immediate results. Afraid of getting my hopes up after the disappointment of Nucala.
Day 5: Peak Flow is at 420. Walked home today with groceries whilst maintaining a conversation. Haven't done that without steroids in a very long time.
Day 6: 440
Day 7: 510

To be clear: I have not gotten the final pathology results yet, so I might not actually have it but I still wanted to tell my story here.
A year ago, I (then 25F) started noticing swelling in the back of my neck that wasn’t going down with time. I chalked it up to a sinus infection that took forever to get properly treated due to a bunch of unfortunate life circumstances. After a proper full course of antibiotics in October and getting COVID in December, I started to realize in January that I no longer had an excuse to have swollen lymph nodes. All my blood work was coming back perfectly normal including thyroid and other hormones. I was also rapidly gaining weight for no reason, had extreme fatigue, and was extremely heat intolerant. I literally would be outside in the snow for 20+ minutes with just a t-shirt and sweatpants and be still too warm. Around this time, I had to switch my PCP due to a change in insurance. My new PCP (God bless her) is wonderful and was properly concerned when I mentioned I’d had swollen lymph nodes since April 2023. She ordered a neck ultrasound and you’ll never guess what they found…
3 thyroid nodules. Two small, one much bigger (1.6 cm). The big one qualified for immediate FNA. My lymph nodes seemed fine, if a bit reactive. I was referred to a general surgeon to get the biopsy done.
That appointment with the surgeon is when I was told that basically I’m too young to have thyroid cancer and that even if I did, it wouldn’t explain my symptoms because “thyroid cancer doesn’t usually have symptoms.” This surgeon says he’s been doing thyroidectomies and lobectomies for 23 years… he was so incredibly dismissive of my situation but at least he ordered the biopsy.
I should also mention that my symptoms (including severe insomnia due to temperature disregulation) have made me unable to work or have any kind of normal life. I’m “lucky” to be on Medicaid so I could get these appointments for free. In the surgeon’s notes for the initial visit, he opted to focus on my mental state because I have had a history of psych ward hospitalizations.
The biopsy sucked… I’m resistant to local anesthesia. I told the nurses and everyone but I still practically had to be held down as I lay there literally whimpering as they did the FNA. Based on my research, I had not expected it to be bad at all. I wasn’t given anything other than an ice pack and I was even expected to drive myself home. I could barely turn my head but I didn’t have a choice. Thankfully I got home safely.
Over the next few days, the swelling in my neck just would not go away. Eventually I had to see my PCP because I couldn’t function at all. I couldn’t talk without irritating everything. I couldn’t wear regular t-shirts or any clothing that touched the front of my neck. My PCP thankfully took my pain/discomfort seriously and gave me tramadol and prednisone to try to help. It didn’t do much but I think it was better than nothing. Even so, I still wound up in the ER because I was occasionally having minor swallowing/breathing issues.
Finally after almost a week, the “results” of the FNA came in: “suspicious for neoplasm.” That’s it… not even a Bethesda class…
I got in touch with the surgeon to go over the results and next steps. When I informed him of the ER visit, he retorted, “why didn’t you call us??” My response: “I did, and I was told to go to the ER.”
I also tried to pin him down for more concrete answers to why I might be having some of my symptoms and again, he refused to say anything of use. I expressed frustration with this as I was trying to process through everything and figure out what to do next. I straight up asked if I ought to see an ENT or other specialist and he still refused to give a straight answer.
Eventually, we decided to do genetic testing to stratify my risk of TC. I’m pretty sure the surgeon told me I would hear back in a week or so but I could have misheard that.
Regardless, I decided to check his notes about our phone conversation and read this lovely excerpt…
“Patient was extremely upset that no one has addressing her "symptoms." She complains of a myriad of symptoms to include night sweats, which she describes as difficulty swallowing, dry mucous membranes, etc. I explained to her that I am sorry that she is frustrated however as a general surgeon I am essentially working up an incidental nodule in her thyroid. As she has normal thyroid function this would not be the cause of any of her symptoms. I would be happy to continue to workup her thyroid mass but unfortunately she needs to follow-up with her primary or possibly an ear nose and throat doctor for her other symptoms.”
I’m particularly fond of his use of quotations around the word “symptoms.” Also I would hardly say expressing frustration qualifies as being “extremely upset.” Again this was over the phone. I wasn’t crying or anything like that. Then again, this is the same doctor who started off his notes about me by saying “Patient is a 26 y.o. female with significant mental health issues who presents today for evaluation of her thyroid.” My mental health has nothing to do with my thyroid or lymph nodes, thank you… I digress…
Well the genetic testing results came back “moderate.” Because of course they did… thankfully my surgeon has enough sense to know that a 45-60% chance of cancer is too high to not do something about so I got scheduled for a total thyroidectomy for April 18th.
So yeah, the surgeon who claimed that “I did not have thyroid cancer” just had to do surgery to remove my thyroid because I had a too high chance of having thyroid cancer. I’m very curious to see what the finally pathology results will be, especially since the tumor was 0.4 cm bigger than it was initially a few months ago.
Recovery from the TT has been really rough. I’ve never had any surgery before so all of this was uncharted territory. Turns out, it’s not just local anesthesia my body doesn’t like…. I woke up screaming and thrashing in the recovery room. They had to give me fentanyl and other strong meds to calm me down and get me oriented.
I’m still on oxy with acetaminophen 3 days later… the swelling is pretty bad and swallowing can be not fun at times. I cannot imagine going through this with mere NSAIDS and no narcotics… I’m not even the kind to get addicted. I don’t want to take oxy but I have to if I want to be the tiniest bit okay.
The weirdest thing I’ve had to deal with so far is random numbness in my jaw and sometimes arms and back. Is this normal? At first it was really tingly in my face so I thought I was hypocalcemic. I went to the ER (again) and they gave me IV calcium and it hasn’t helped. My blood calcium was only slightly low so idk.
I’m just so not used to major medical stuff like this so figuring out what’s actually concerning and what’s not has been one of the hardest parts. That and a lack of support from my family that I live with. It’s easy to feel really alone since I’m so young and the rest of my peers are physically healthy.
I’m getting through it, one way or another. I hope this can be encouraging to people to listen to their bodies and to stand up for themselves. It sucks but I’m grateful to finally be getting treatment.

As the title suggests, I recently had the conversation with my neurologist. Honestly, he was the distraught one between us (okay, I have alexithymia, so the concept of sorrow/sadness doesn't actually process). We're officially out of treatment options, so the best we can do going forward is slow the decay and see how long I last.
While many people have called me a pessimist over the years, I would consider myself a realist. "Hope for the best, expect the worst, and if you land somewhere in the middle, it's a good day". So I'd been expecting this conversation for some time, and figured this would eventually be where I wound up.
My Myasthenia has been at stage 4b of 5 for a few years now. There's occasionally a glimmer of the man I once was, but they're increasingly few and far between. It takes me longer and longer to rebound from crashes and crises...the last one took me over a month to come back from. My body has slowed down so much that a half-hour of moderate activity costs me a full day or two of recovery time; not to mention the worsening ability to function during said activity.
The prognosis itself doesn't bother me. It is what it is. The part that annoys me is the variability of it. Will I stay as I am until eighty? Will I have a crisis next week that does me in? Will a new treatment pop up that helps a little? Who knows ("The Shadow knows! Heh heh heh...")?
This frustration has been stewing in my mind for a week or so, and I just wanted to vent into the void to a community that I figure would understand.
Edit: There's also the increasing fury at constantly breaking bones due to being on Prednisone for so many years...nine ribs, five vertebrae, and the sternum so far.

30M - Crohns since 2007.
Current meds - 6MP, Cimzia, Prednisone (just started)
Symptoms - extreme fatigue, fever on and off for 45 days (100.4-101.8), stomach pain, perianal pain, hemroids, scarring from prior anal abscess, possible fistula, no energy and brain fog/confusion
Blood - CRP 58, Testosterone 49, Fecal Calprotectin 1900. All other lab values within range or close to normal range. WBC count also within range. Ever so slightly anemic a few points below range.
CT Enterograohy - results pending
Colonoscopy - 4/17/24
I was just discharged from the ER. They gave me fluids and pain meds which took the edge off and made me comfortable for the first time In weeks. They gave me 3 days of pain meds to go home with. Out of work for two weeks.
Why would my testosterone be this low at my age? This fatigue is so overwhelming, is this just because of the flare up?
Sitz baths help in the moment but not really after.
I have been on every biological except Skyrizi which is next up but can’t live like this anymore. Quality of life is zero and seeking additional conversation points with my GI. How do I get this fatigue and anal issues under control?
Any input is helpful and appreciated. Thank you.

Hey everyone, I hope you all are having a great day/night and are getting through your own itching journeys as well.
This is my first post in this subreddit, even though I've lurked around for about half a year now. I've had some problems of my own relating to my eczema, but it was stuff that I really felt I could root out on my own without making posts or anything like that. This time however, I feel like things are going south, and I would appreciate words of advice from anyone or even suggestions on what to do.
These next two paragraphs serve as just a bit of important context. I'm an 18-year-old male who has gone through eczema throughout mostly half of my life. It started when I was 9, but it was nowhere near as bad as it is now. By the time I was halfway through age 14, I did something that seriously destroyed the skin barrier on my neck/face. I won't show this here, but it was bad enough that I had to be prescribed on corticosteroids (Hydrocortisone and Triamcinolone Acetonide) along with Prednisone to fix things up. Of these three drugs, I continued Hydrocortisone for a while until I was almost 18, when I decided to quit using it and started my Dupixent treatment instead. I wasn't exactly using it everyday like some other people have, so withdrawal symptoms didn't last too long.
In November 2022, while I was using Hydrocortisone from time to time, my skin started periodically flaring up with hives (something it never did before) every 2-3 months on my entire body. For 3 different times, I had to get Prednisone prescribed to me just to get rid of these hives. By the fourth time in May of 2023, it was just too risky to get another Prednisone prescription according to my doctor, and I agreed, so we decided to consider different options. This is how the conversation came to Dupixent, which I finally ended up receiving my first package of and started doses in November 2023.
After three weeks of injections (where the first time I had to do two of them), I was fully clear on the body, and itchiness along with all of my hives were gone. My upper chest to my face did not improve however, and I was very red, so much so that my face became worse and was flaking. Applying Zinc Oxide which I had purchased from Amazon would make my face burn with intense pain. It was so bad, that in January of this year, that I just decided to skip out on an injection to see if that was really the cause of my problem with my face. During these extra two weeks without a Dupixent dose, my skin on my face started to clear up. I wasn't sure if this was because I hadn't injected myself with Dupixent, or if it was because Dupixent was reaching "stasis" by this point in my body. Regardless, I did another injection after this four week period, but after that I was stubborn and felt like Dupixent was the reason my face was becoming red, and I genuinely couldn't stand my face appearing like what it did on the outside. Ultimately I stopped Dupixent after that last dose in January.
Throughout late February and the entirety of March this year, my skin had been the best it ever was, so much so that I seriously doubted needing Dupixent ever again. I seriously mean that it was the best, as my face started getting rid of the inflammation which it had non-stop for several months straight, and there was absolutely no itchiness all over my body.
This didn't last though, because in the last 14 days, I consumed a dish with peanut butter (not knowing that it had peanut butter) which started another massive hives outbreak and started to reverse all of the hard work that I had done healing. Hives was something I hadn't dealt with for many months by this point, so seeing this was seriously demotivating to me. I also took a warm shower a few days after this, which actually ended up making the outbreak a lot worse. As I'm typing this right now, my hives (which are mainly on my inner elbows and my inner knees along with some other areas nearby) are showing no sign of stopping, and I'm going crazy wondering how exactly I should proceed with this. Applying Aloe Vera and taking Zyrtec (an H1 Antihistamine blocker) isn't really getting rid of this outbreak for me neither.
To anyone who has taken their time reading all of this, thank you so much for taking the time, and if there's anything that you think I should do, I'd really love to know right now. I understand that I probably shouldn't have stopped taking Dupixent, and that is 100% my fault. I know that restarting Dupixent again may not be as effective as it was the first time. I still have some unused Dupixent pens in my fridge right now though, and my dad's insurance covers getting more of them, so I'm not quite worried about that. I also acknowledge that asking Reddit for such advice is not the equivalent of talking to a doctor. Despite that, as a young guy with a recurring hives problem, I would still like some advice on what steps I could consider taking next (based on your own experiences), whether that is starting on Dupixent again, talking to my doctor, or something else. I thank you all very much once again.

I’m 17 (M), I was at a small gathering about 3-4 nights ago, the music wasn’t very loud and there were no crazy loud conversations. On the drive back I noticed that my left ear seemed to have a bit of fullness, but no hearing loss, so I went to bed like normal. I woke up the next morning (4/7) with a crazy loud ringing, and an extremely muffled left ear that I could barely hear out of. Immediately I was alarmed and did some research and found out about SSHL, I considered that the worst possibility (lol). I went to work and could barely hear what people were saying since I had my right AirPod in. This was alarming enough to leave work and go to urgent care. My physician told me it’s likely liquid that will clear and to use Flonase. This just didn’t feel right to me but I tried the Flonase for a day or two and saw nothing. However now there was less ringing and fullness, still couldn’t hear though. I booked an appointment with an ENT and luckily they got me in the next morning. (4/9) Did some hearing tests and I have about 72% word recognition and half volume deafness in my left ear. More specially severe low-tone SSHL, which my ears can’t properly process lowered pitched sounds such as bass or the beat of a song. He has prescribed me 60mg of prednisone for two weeks, followed by a tapering period. I have hope, since I caught it early and I’m young but I know that it’s never a guaranteed thing, still freaking out over the possibility of wearing hearing aids and having ringing for the rest of my life. Just wanted to get your guys’ thoughts. Am I likely to recover given my circumstances? Please be honest and wish me luck.

I’m 17 (M), I was at a small gathering about 3-4 nights ago, the music wasn’t very loud and there were no crazy loud conversations. On the drive back I noticed that my left ear seemed to have a bit of fullness, but no hearing loss, so I went to bed like normal. I woke up the next morning (4/7) with a crazy loud ringing, and an extremely muffled left ear that I could barely hear out of. Immediately I was alarmed and did some research and found out about SSHL, I considered that the worst possibility (lol). I went to work and could barely hear what people were saying since I had my right AirPod in. This was alarming enough to leave work and go to urgent care. My physician told me it’s likely liquid that will clear and to use Flonase. This just didn’t feel right to me but I tried the Flonase for a day or two and saw nothing. However now there was less ringing and fullness, still couldn’t hear though. I booked an appointment with an ENT and luckily they got me in the next morning. (4/9) Did some hearing tests and I have about 72% word recognition and half volume deafness in my left ear. More specially severe low-tone SSHL, which my ears can’t properly process lowered pitched sounds such as bass or the beat of a song. He has prescribed me 60mg of prednisone for two weeks, followed by a tapering period. I have hope, since I caught it early and I’m young but I know that it’s never a guaranteed thing, still freaking out over the possibility of wearing hearing aids and having ringing for the rest of my life. Just wanted to get your guys’ thoughts. Am I likely to recover given my circumstances? Please be honest and wish me luck. *Edit - thank you for the kind words, I will keep you guys updated frequently 🙏
Update (4/11/24) - This is my third day on prednisone and good news, and i think it’s working. My overall hearing in my left ear feels like it’s improved slightly, with word clarity and sensation of pressure being considerably better as well. However, still have this ringing in my ear like a mf, hopefully it’ll at least die down a little bit in the next couple days, but the progress is looking good!
Update (4/13/24) - It’s been 6 days since onset and my 5th day of prednisone, and my hearing is almost completely recovered. My left ear barely feels muffled and I can understand almost everything that is said on my left side. Theres still a bit of tinnitus which can be annoying, but that has calmed down slightly too. Recovery is going good, I feel that I will have my hearing fully recovered! I will keep you guys updated.
Update (4/16/24) - It’s been 8 days since I started prednisone and about 10 days since onset, I can hear probably 90-95% of what my right ear is hearing. There is still ringing, but it’s about a 3-5/10 on the loud scale usually. Even where I’m at now I would never need hearing aids which is a relief, I’m hoping this post serves as a symbol of hope for those struggling with SSHL. You can recover from this!

I'm writing to share this story for a couple reasons I feel need to be addressed. While I do need help of many kinds, and do ask for it here: HELP, SOS, accepting any and all help. I believe I will need to seek a medical lawyer or something. BUT, I also know that I am very privileged to be in the position of being able to write, think, ask for help, have support, to make calls, have insurance, and advocate for myself. Privileged in being educated in these specific fields and how to better navigate them. Privileged in being youngish and healthy enough to heal, able to cut out other substances, being able to live with family and work out and have back-up medicine (prednisone) to stay alive when that once was the only option; which is more than many others in history and across the globe, on top of having ongoing family support. I'm lucky in ALL those parts, and yet..
I am being arbitrarily denied a life saving medicine, Stelara, which I had before; and slowly being left to feel my health wither without the ability to control it, while nearing what I thought was the end of this two year long adventure of fighting Crohns, Covid, C.Diff, and my colon. For all the work and luck and support, the decisions for my health have been taken from me, taken from my doctors, taken from the pharmacy, and are being held up by an insurance company (Ambetter from MHS) refusing to take appropriate action, and lying to me and my care team about it.
I know for 100% certainty that my story, while bad, is not stand-alone. Too often these situations end with sickness that slowly eats away at the person and the stories don't get told or get lost in the grief which that family eventually deals with; and those experiences don't often get spoken to the public, and are rarely considered when talking about the dangers of our medical system, and of medical neglect, mismanagement, and negligence. The final results lead to a slow withering quiet sick passing, with promises of support while waiting on-hold to explain your issue to the next representative. I share my story because I genuinely don't know what else to do, and because I know I'm not alone in this kind of tragedy, one which is felt by a vast swath of people, which is a tragedy in and of itself.
While my experiences with the problems of insurance and medical accessibility go back over a decade now, my recent issues are related to nearly making it to the end of multiple surgeries finishing in a full colectomy. Since my follow-up surgery in December, I have been cleared by the surgeon, everything has gone well and healed effectively. I’ve put on more muscle and been in the gym more frequently, so it's clear that I have the potential to heal, and things should be trending up. However, I still have not received my primary medication to manage the Crohn’s disease at all throughout this time. This is a medication that is supposed to be given every 8 weeks to manage ongoing inflammatory response and Crohn’s symptoms; the disease which caused the need to have surgery… which has not been given since Nov 7, 2023.
I had to change insurance at the beginning of January, so it can be expected to be a challenge, but they ignored the requests from my doctors office and pharmacy, and we later learned there had been an issue with auto-filling my insurance info with a previous plan. Ridiculous but understandable. Throughout February there were multiple calls to try and address the issue, but it was rejected repeatedly, with neither notice being sent to the GI doctor or to me, nor an explanation as to why that’s the case. In the first week of March, I was hospitalized in the ER for a day with severe pain, swelling, inflammation, and Crohn’s related symptoms, which has ever since been treated with steroids, prednisone, which are not meant to be long term treatment.
It was after this that my doctor and I began pursuing getting the medicine especially seriously, but with no luck. Even after covering the ER visit, the medication has been denied repeatedly. Appeals have been requested which were denied. Further urgent appeals for emergency requests were submitted, but rejected as being urgent. And most recently, I was told that none of those appeals were in their system, and would have to have my doctor contact them again to submit information; directly counter to the conversation I had with the GI nurse, blatantly lieing. I have since gotten set up with the manufacturer of the medication for a copay assistance program, and next will be reaching out to try and get it directly; but it is clear that this is wrong. I am insured and have had coverage. I was previously on this medication and have a history of it escalating to this and responding effectively to it. Even financially, the cost of covering my hospitalization for THIS EXACT PROBLEM, ends up being greater than the cost of giving me the medication which would prevent it. This should not be the case, and it makes no sense to me.
Part of me really just wants to get my medication and to find an escape from this trap of being given just enough medicine to stay alive, but not enough to reach true health and begin life anew and find stability; BUT another part is furious that it has now been over 3 months of medical neglect that has resulted in another hospitalization, and unknown damage due to inflammation and lack of treatment and that this is something that should be fought. Should be held up for examination and reflection of a broken system that is leaving people to slowly die. Somehow, Ambetter and all health insurance companies should be held accountable

I moved from the city to rural area. Only a few rheumatologists around, all working in the same clinic.
I like my rheumatologist, but he's clearly busy. The only way for me to get a hold of him to call his assistant, which always goes to voicemail. I get a call back less than half the time.
Same thing even when they tell me they'll call me back. Half the time they don't.
They told me I need to see an endocrinologist and will help me find one. Heard nothing. Next appt. Same thing. We'll help you find one. Heard nothing. (I was proactive and tried to find some on my own, but was turned away... Doesn't accept outside referrals, too busy, already met cap for Medicare patients, still haven't heard back from a 4th)
I needed to reschedule for an earlier appt, but Medicaid accidentally re-enrolled me in from my previous state, so until I had it removed my insurance they wouldn't let me see/talk to him.
My biggest issues has been getting stuck on way too high of a dose of prednisone, and just uncontrolled flares. (Just started up remicade again, not working yet)
And the last 3 weeks I've started getting new flares, much worse than ever before. Normally my joints just blow up with inflammation, now I can't get out of bed for 3 hours at a time. Pain is a 10 in my knees and ankles and I can't stand/walk/bear weight until I take more prednisone.
I gotta call back, "yeah he sent the prescriptions over and he'll talk to you about all the other stuff when you see him in a week." ... Actually 9 days, but whatever.
Since I was on more prednisone than he knew, I tried tapering down hard and fast before our next appt... But landed myself in the ER with a nervous breakdown. I had so much fear, anxiety and shame to tell anyone how much prednisone I was actually taking. I've been so scared to have that conversation with my rheum, and of course he was the on-call rheumatologist for the hospital that day.
Listen I've been on a high dose for years, and already know how horrible it is for you. It's destroyed my body. They weren't refilling my 1s and 5s, so I was nibbling on 20s like an idiot for a couple weeks and lost track. I've just gotten sooooo sick of calling his office trying to get scripts filled.
I know I messed up, but now I'm starting to get mad. I never want to be that annoying patient and always try to put myself in their shoes, but damn it. Tell the people who are supposed to follow up, follow up. Shouldn't I have better access than the assistant's voicemail? It's painfully obvious they just don't care. But this is my life.
I guess I just need to travel for better care. Thanks for reading if you got this far. Just damn. Had to get this out. Wish more people cared, or pretended to.

I’m 38 weeks exactly and I’ve just hit a wall. I can’t do this anymore. They won’t even consider inducing for another week, and that’s when the conversation would BEGIN.
I have medical PTSD from a previous, unrelated ICU visit a few years ago.
I’m sure my meds aren’t staying down properly.
I’m now in the hospital for rehydration with my midwives like twice a week, which is making the need FOR my PTSD meds even more.
No meds for nausea have worked, except for ones that had to lower the PTSD meds, which gave me flashbacks, due to interactions. I’ve been on everything from diclectin to prednisone (a low grade steroid) and there’s literally nothing else they can give me.
I throw up everything. Ensure drinks, buttered noodles, sometimes even popsicles etc..
I understand wanting to make sure this baby is fully ready to be out in the world, but at what point does my quality of life come into play? I feel like an incubator & not a human who matters. He’s measured ahead of schedule this entire pregnancy & one ultrasound tech commented on how long he is and how big his head is. He moves constantly. Every non-stress test I’ve taken, he’s been PERFECT.
Yet I’m here, crying at 2am, wanting to die because I’m also in withdrawal from Effexor and Abilify due to throwing it up, back in the hospital every few days, having nightmares, and just generally unable to survive.
I throw up so hard that I pee myself and see stars and have almost passed out multiple times while throwing up.
How am I meant to make it another week, much less to 40+ weeks and go into spontaneous labour?
How am I meant to make it through labour if I’m this tired, hungry, dehydrated, and did I mention TIRED?? I’m so worried about that.
I just don’t know what to do. I’m talking to my midwife again tomorrow hopefully. I’m hoping to advocate for myself that something needs to give but I don’t know. These past couple of weeks I’ve only gotten worse.
Help.

Thanks to everyone for the advice last week when I wasn’t able to move. I got my MRI.. still waiting for the “report,” so Im not asking for advice, but just sharing my image as I think I found the culprit. 1 round of methylprednisone pack and day 3 of prednisone 20mg twice a day… Finally moving and about 80% better. I have a neurosurgeon follow up in 2 weeks, but Im hoping this wont require surgery. 😕.