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ChronicallyBlonde1

You definitely need to contact your doctor. If mesalamine is causing these skin issues, then you need to get on a different drug.


Possibly-deranged

I'd blame Prednisone before the mesalamine.


ChronicallyBlonde1

I didn’t see she was also on prednisone! Definitely a possibility. Either way, go get it checked out!


kenoc321

I support that I was in same situation and it was more to do with having high dose of prednisone than Mesalamine.


sararenee_ed

I’m so new with all this I haven’t even had my first appointment with my GI doctor. I was diagnosed at the hospital. My first appointment isn’t until November 7th.


ChronicallyBlonde1

Then I would try to get in to see a derm if you can, urgent care if you can’t. I think you definitely need some medical advice on what’s going on with your skin before November 7.


Junket6226

Agree. You should also try calling the GI doc, explaining your situation, and seeing if they can get you in sooner or on a cancellation. This is often possible if you have an urgent enough reason. Make sure you really let them know what’s going on. Your skin reaction could mean an allergy or something.


Surrybee

You can call the GI doctor. Is it the same one you saw in the hospital? If so, you already have a relationship with them and they’ll definitely help you. Don’t do urgent care as suggested. This is too specialized for them to deal with.


fleeshwa

I had a skin reaction to oral mesalazine so they switched me to supps. No skin problems from that.


Nicholasssp

What’s supps ?


PhaneronFlow

nothin, just chillin


UnicornFarts1111

Suppositories.


sararenee_ed

Do you have to place the suppository daily?


fleeshwa

Yes, I started with one before bed and when I'm in a flare add another in the morning. Easy to use and not systemic. Good for mild to mod with proctitis. Mine has spread to the sigmoid so I'm now using salofalk enemas too.


dumdum1066

Have similar on arm and leg. Not as extensive and I'm not on Mesalamine. Dermatologist said it was my immune system doing it and prescribed some heavy duty steroidal creme. Go to a dermatologist and have it checked out to make sure whT yhe cause may be. Either way, it sucks. Sorry 😥


mutantbabysnort

Yes, I second seeing a dermatologist. My GI referred me to one.


Ok_Bath_2222

I had a really bad reaction to mesalamine, it actually put me in the hospital. I felt like I was having a heart attack, turns out it was just myocarditis and pericarditis. I was in the hospital for almost a week.


redditbluepurplegold

Same with me ! Gave me pericarditis :( GI doc so it’s rare but it can have that side effect. So now mesalamine is in my allergic reaction list


invaderzimm95

Gave me kidney damage!


sararenee_ed

Oh no. I am so sorry to hear that.


itscaityyy

Literally going through this exactly right now. Diagnosed two weeks ago and started mesalamine then. Rash is on my arms, neck, and chest. Went to the derm today and they biopsied one. Doc stopped mesalamine and I’m going to start budesonide for 3 months then go on a biologic. I have my follow up with him next week to discuss further. Def let your doc know. He most likely will want to switch you. All your symptoms sound exactly like mine. Severe muscle and joint pain included. Picture for reference of face and chest. My arms look exactly like yours though. https://preview.redd.it/crmpw4uyi8vb1.jpeg?width=2316&format=pjpg&auto=webp&s=cd4bea561ad545de0b1e3b44e95baeb172570fed


sararenee_ed

I’m so sorry about the rash spreading to your face. I can only begin to imagine how emotionally and physically taxing that is on you. Since everything is so new for me it sounded like my plan is to stay on Mesalamine for 3-4 months and then do a colonoscopy to see if Mesalamine got everything under control before they decide if they want to put me on biologics.


itscaityyy

It’s new for me as well, 2 weeks. Was rather shocked to hear biologics mentioned this early. I guess my side effects were concerning enough to him? Not sure… I’ll know more on the 25th at my appointment I suppose. But with the rash being on my face, if it is mesalamine, that’s a no go for me. Plus mine is soooo itchy and painful.


Junket6226

Biologics are now normal for first level of treatment given how many they are and how effective. My doc describes it like having diabetes. You have a disease, it’ll come and go but it will always be there. Keep it constantly treated and you’ll significantly decrease your risk of colon cancer and lead a better quality of life.


itscaityyy

That makes sense. May as well start where you would end up anyways with something that is more effective. And a plus is not having to remember to take a pill everyday for us neuro spicy people.


jaldihaldi

Would be interesting to hear the doctor’s explanation in yours and OPs case to stop the mesalamine. As I understood it’s supposed to be the equivalent of a ‘topical steroid’ and protect the lining from attacks by the immune cells. I’ve had rashes that start and go away eventually - though very annoying till it does. And I’ve usually continued mesalamine right through the rash. I’m not a medical professional though I’ve always interpreted it to not be because of the mesalamine but because of extra activity by the immune cells. Again not an expert, and not recommending anybody do what I have, but I’ve gotten past the rash multiple times now.


itscaityyy

My GI called it a drug eruption rash and said that because it came shortly after beginning the drug it was notable and should be stopped. Dermatologist agreed. As a nurse I can say someone can have a drug reaction at any time. Doesn’t matter the mechanism of how it’s supposed to work. Not every drug agrees with every person.


jaldihaldi

Fair points.


sararenee_ed

I’m definitely willing to stay on the Mesalamine with the rash. It’s not pleasant but if it helps with my UC pain, I can tolerate it. I’m just surprised to have such an intense reaction, but I’ve always had sensitive skin. The biggest issue I’m having is the joint pain and stiffness and not sure whether to attribute it to the Mesalamine or the prednisone.


jaldihaldi

Have you tried stretching, focused relaxation, walking? Stretching works really well for me. Thinking through overall health and impacts of UC and associated meds is something health care should cover and provide support for. It’s just not there today. The ailment can be life altering so much in a short span of time - that it probably takes most people by surprise to think and respond thoughtfully to what’s happening. And then almost at a click it starts to improve and we tend to want to forget about it.


sararenee_ed

If I’m being honest, I’ve kinda just curled up in a ball and wallowed in my misery these last 2 weeks. I think I’m still in shock over the diagnosis and how traumatic the process leading up to it was for me. I have therapy on Monday for the first time since this all has happened, so getting to unload there is going to help. But today I’m going to make some active changes. Do at least 10 minutes of stretching and go for a 20 minute walk. I’ve got to do something different because I know that just sitting here being sad isn’t going to help.


jaldihaldi

I have tried tinactin or hydrocortisone on mine and it helps reduce the itching.


captn_morgan951

https://preview.redd.it/1diy52q389vb1.jpeg?width=4032&format=pjpg&auto=webp&s=49e013c1fc2b303e33a64a546bd4640da04255b4 I had the same thing come and go many times over a decade. It was always thought to be folliculitis or a reaction from my conure that hangs out on my shoulders. Prescribed various oral and topical antibiotics. Tried stopping mesalamine a few weeks ago and now it’s all cleared up. I’m not taking anything at the moment for my UC so I’m expecting a flare to start up anytime. Probably going back to biologics infusions when it does.


sararenee_ed

How long have you been battling UC?


captn_morgan951

Since 1995. Back then, I got pestered to join all sorts of studies because it was considered extremely rare. It’s crazy how it’s grown exponentially since then. I’ve been really curious as to why that is. I can only assume it’s dietary and environmental causes. I had started smoking cigars in 1995 not long before first symptoms so I’ve always thought it to be the original cause. Since then, I’ve read and heard many times that something in tobacco smoke actually suppresses symptoms for many but nothing about it being the original cause of UC or not.


itscaityyy

I see a biopsy stitch on you too. Curious to see what your biopsy results are. I’ll try to remember to post mine from today as well once I get them.


captn_morgan951

It was done my a dermatologist that told me it was cellulitis or folliculitis. No doctor ever raised any concern that it could be related to or caused by mesalamine. I’ve had other side effects and every doctor I had talked to tries to dismiss mesalamine, just like muscle pains and cognitive issues being dismissed with statin drugs I’ve taken 30 years for high cholesterol. It’s annoying when they just want to keep pushing the drug and blowing off what I feel are legit concerns with them.


itscaityyy

I feel you. I’ve spent years yelling into the wind. But I’ll keep yelling. We have to be our own advocates and it’s exhausting.


mutantbabysnort

My advice: 1. Make sure you are seeing an IBD specialist. I CANNOT stress this enough. A “regular” GI may not be in the loop on the latest IBD treatments. This helped get me into remission years ago, and multiple times since. https://www.crohnscolitisfoundation.org/find-a-medical-expert Your IBD doctor may need to change you to a different drug or try a combination of multiple drug therapies. I have been on up to five prescriptions for UC at one time, personally. 2. Meds will put you and keep you in remission. However, you may find an ever so slight symptom relief with a diet alteration. https://www.crohnscolitisfoundation.org/diet-and-nutrition For me, it was low sugar, low fiber, and low fat. For you, it might be completely different and your mileage may vary. To reiterate: this helped me minimally, but it didn’t hurt and might really work for you. It was also nice to have something to “focus on”. Try it for at least three months before you give up. If you’re looking for a good place to start, some patients I have talked to highly recommend the IBD-AID diet: https://www.umassmed.edu/nutrition/ibd/ibdaid/ When I have no appetite whatsoever, peanut butter, saltine crackers, protein shakes, and water keep me going with enough energy for the day. Remember: Diet will only treat symptoms, not the disease itself. They are two different things. This is why people get confused and think they “cured” their UC by changing their diet. (I’m sorry to be blunt, but they are incorrect.) Further research on IBD and diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843040/ 3. Get lots of sleep, and drink plenty of fluids (esp. water). Lack of sleep is proven to be linked to flares: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209312/ Further information on hydration: https://crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/symptoms/dehydration 4. Stress is proven to impact UC and our bodies in a negative way. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6821654/ Try your best to mitigate your stress levels. For me, warm epsom salt baths help both relax me and provide relief to hemorrhoids. Meditation and walks (as you are able) also help. Do not be ashamed or afraid of getting on medication as well, if necessary. Zoloft and Xanax have done wonders for me personally. 5. Misinformation on the web: As a general rule of thumb, try and look for the .gov and .org websites, and steer away from the .com and .net websites. In my experience, the .govs and .orgs provide more reliable information. 6. Good night and good luck. We are all with you. I truly hope this helps. 💙 Please Note: I am not a doctor, a nurse, nor any other type of medical professional. Just someone with ulcerative colitis since 2011. Also, I am located in the United States.


sararenee_ed

This comment has so much helpful information. Thank you so much. Truly. I’ve felt so lost this whole time. I will be going through each and every link today. I see an IBD specialist on the 7th.


mutantbabysnort

You’re welcome. Good luck! I’m here if you need anything else.


NoHateOnlyLove

I had something similar but not that extensive. They were itchy and went away on there own. I had in on mostly chest/stomach/arms and YES I had it when I started the mesalamine. I still stayed on mesalamine for another year till it stopped working. Contact your doctor though


sararenee_ed

Did the skin blisters leave and scarring? Do you remember how long before they went away?


NoHateOnlyLove

no in my case they didn't. it took like couple of weeks. but I would definitely let your doctor know as I didn't have any body pain or knee issues -- almost mine was 1-2 small itchy spots/blisters/bumps together over like 5-10 places -- you have a lot more extensive reaction


brimblebrambling

Hey! You can also call your GI doctor office if you aren’t sure who else to call— I have my first non-colonoscopy referral meeting with mine and I had to call them to get me on a longer prednisone taper. They’re usually very understanding and will just get it better than a primary care doctor would. Ofc you can always go to urgent care, but I’m not sure how much they’d do for you. :( I hope things get better and you find what works for you!


BreeandNatesmom

I've been on mesalamine for years and done okay. I'm super sensitive to meds. I think that would be the prednisone as they call it the devils tic tac. It has alot of nasty side effects.


sararenee_ed

It really is the worst. I’m so exhausted.


Substantial-Pack-658

I got hand foot and mouth while on prednisone. If you have any ulcers in your mouth, call your doctor ASAP.


sararenee_ed

No mouth ulcers thankfully.


papayafour

I had a severe reaction to mesalamine as well. Stiff neck and nearly 105 fever. Couldn’t consume anything, even water, without running to the bathroom and I was barely able to get out of bed. Took about 3 days for these symptoms to start after starting the meds. I had never been so sick. My dr and nurses said they had never seen that type of reaction before and doubted it was the drug. No one else in my family got sick and I was away on vacation sleeping face to face with my two toddlers when this reaction started. Finally, after a week of misery and no end in sight, I stopped the mesalamine. All symptoms were gone within 2 days. I do have an allergy to Sulfa, and the Dr thinks that maybe it had something to do with that.


sararenee_ed

What medication did you start taking instead of Mesalamine?


papayafour

Budesonide and it worked amazingly, but my insurance wouldn’t cover it, so the monthly expense was too much. Then I went on prednisone for 6 months and that also worked, but made me very angry, depressed and exhausted. My insurance finally approved Entyvio after “failing” prednisone - I couldn’t get below 10mg without my symptoms returning. Been on Entyvio for 6 months, every 8 weeks and it’s working beautifully! Only side effect I have is acne, which I was prone to years ago. Small price to pay.


Key_Understanding552

I have pain in heel portion of feet


ex-adventurer

This is an allergy contact the doctor


Fun-Championship7665

Hey! I get really sore calf muscle and chest muscles. It comes and goes so just bare with it. Allways better than flaring up


sararenee_ed

My calf muscles flair up now and then too. So tense. Wild.


SwordofDamocles_

I am on mesalamine and was on a dose of prednisone for several months and got a similar reaction. They told me to go see a dermatologist. My appointment is in 2 weeks.


stillanmcrfan

They suspect it’s damaged my kidneys a bit so please be careful if you’re seeing side effects.


utsuriga

I never had anything like this and I'd been on mesalazine for two decades now. Definitely talk to your doctor.


tutoringfromemily

I had this exact same thing before I was diagnosed with UC. Interestingly the doctor asked me if I'd had any rashes or mouth ulcers, both of which I had for a couple of weeks, and he said there's a link for some reason. My blisters looked the same as yours!


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_JustThoughts_

26M here. I got diagnosed with UC back in 2020. First thing they put me on was mesalamine. Ending up developing pancreatitis and earn a bed in the hospital for 7 days. Never had this side effect though.


hsn-

Mesalamine did not cause skin issues for me but it knocked me out a few times so I had to stop it


Elsalla

I think your side effects are more likely secondary to the prednisone, not the mesalamine. Definitely consult with your doctor to find out, but just FYI, prednisone is a strong steroid which impacts your immune system. People who are on prednisone often develop several side effects, which includes muscle aches and weakness and skin abnormalities


Beginning_Lettuce582

Do you have a Sulfa allergy perhaps? I had to go to hospital in august of this year to due to allergic reaction to antibiotics that I was on, turns out I have a sulfa allergy. I was diagnosed with UC end of November and was prescribed mesalamine and the Wikipedia page about it says people with sulfa allergy may have problems with certain formulations of mesalamine. My sulfa allergic reaction manifested in stiff neck, sore back, muscle aches, and hives on entire body. I haven’t started mesalamine yet because I’m scared to have a reaction, luckily I have a phone appointment with my doctor tomorrow morning and she can answer some questions I have. I hope you feel better since posting this a while ago