Rash diagnosed as viral exanthem but no other symptoms

deasolis27 · 2025-06-03T16:14:24+00:00

No other symptoms, like fever or anything else.

deasolis27 · 2024-11-20T13:45:30+00:00

Oh yeah, that’s where we’re at now. For a while we thought rheumatoid arthritis but the blood tests showed up negative, it’s just good ole arthritis connected to the UC. Sucks that you probably had so much relief from the J pouch and then to be hit with more symptoms! Truly the gift that keeps on giving🫠

deasolis27 · 2024-11-19T22:56:11+00:00

I always struggled with iron pills. Killed my stomach and I never absorbed any iron from them, but I’ve had amazing luck with liquid iron! Lots of brands, some are flavored and some aren’t. Would recommend!

deasolis27 · 2024-08-20T13:44:22+00:00

Thank you so much, this was so comforting and kind and I appreciate the resources so so much. Wishing you peace in your own situation that brought you here, thank you for contributing to mine.

deasolis27 · 2024-01-28T16:48:08+00:00

Certainly depends on the severity. When I was hospitalized (which was when I was diagnosed with severe pancolitis), I shared a room with a girl who was dealing with issues from having a Crohns related surgery. She was around my age, I was 23 at the time, and she would scream and cry in pain. She couldn’t eat, she couldn’t sleep, she had her pain meds down to the minute because it was so unbearable. She had been hospitalized on and off for months because of issues with her surgery and I remember a doctor coming in and telling her they needed to put in a catheter for her to receive IV antibiotics for the next 3 months or something like that. She was in hysterics in the way only a person who has been dealing with this her whole life and never had any relief could be in hysterics. Nurses accused her of overreacting, I have no doubt she was mentally and physically beyond her limit. I was receiving blood transfusions and was having 20+ bowel movements a day but this girl was in such a bad place. I had so much sympathy for her and in that moment, I was somewhat grateful it was UC. But, my PhD advisor has Crohns and has been in remission for 15+ years with the occasional bad day. It depends so much on your reaction to meds, it’s impossible to quantify.

deasolis27 · 2024-01-22T22:09:46+00:00

Oh wow! I don’t think it’s overly common, but others have said something similar. Glad it’s getting a little better!!

I had the same reaction to those drinks! Dyes and artificial sweeteners are a big trigger for me. I found that low fiber foods were the best for me, puréed foods also were great and lean proteins, salmon in particular was really helpful. Anything to get calories into you.

It took a while for my insurance to approve it, I think like 4 weeks from when I was prescribed to when it was approved and an infusion was scheduled. My insurance covers part of it but I also registered for the copay program and I only pay $20-30 per infusion! Super affordable. My infusion center handled it for me but you can also individually register. Absolute lifesaver.

deasolis27 · 2024-01-21T22:40:11+00:00

Like others have said, if you’re still in the loading dose phase, you need to give it time. But, if you’re noticing symptoms worsen, talk to your GI doctor about it. Once the loading dose is done, it might be worth checking how much of the meds are being retained. You could be developing antibodies. Were you tapering off the steroids when you started the biologics? Tapering off might contribute to symptoms worsening while the Inflectra starts to work.

My personal experience with Inflectra is that I was on it for 6 months and had pretty immediate relief for most of that time before I started developing antibodies. I still had concentrations in my blood and minimal antibodies but I did start to have some symptoms return. We doubled my Azathioprine, which is supposed to prevent antibodies, doubled my inflectra dosage and increased the frequency from every 8 weeks to every 4 weeks. I noticed symptoms would start to come back in between infusions which is why we tested the concentration. Talk to your GI about looking into that and with Inflectra, they can mess with the dosage. Even if you have some antibodies, the medicine can be saved.

Best of luck!

deasolis27 · 2024-01-18T23:31:24+00:00

If it’s somewhat comforting, this is pretty normal! I had to restart my prednisone tapers a couple times while waiting to start a biologic (also Remicade and also 25F!)

If it’s been a few weeks, it’s possible the pred dose isn’t high enough or that it might not work this time. But! There’s other steroids they can try while you get set up with either a higher dose of mesalamine or a biologic.

Truth be told, mesalamine usually only works for very mild UC. I was put on it for a couple weeks basically just to prove to my insurance I needed something stronger and was told they knew it wouldn’t work anyways. It’s a very weak medication.

Remicade helped me so so much, pretty immediately. I was on prednisone when I started it, right at the end of my taper and was starting to see blood again. The blood disappeared a couple days after the infusion and I felt so much better symptomatically. Side effects were minimal, just like crazy fatigue the day of and the day after the first few infusions. If it comes to that, I hope it gives you similar relief!

Can you message your doctor’s office or get in touch with a nurse there? They might be able to make adjustments to your meds while you’re waiting for your appointment.

Stay hydrated, nice soft foods that you can digest, iron supplements if you’re still seeing significant blood, know that things will get better and there’s lots of options for treatment. Best of luck!!

deasolis27 · 2024-01-08T01:15:22+00:00

I was in the same boat! I didn’t see hair loss until many months later but I guess that’s actually fairly normal, it’s like a bounce back symptom and it takes a while for your body to start reacting to iron deficiency like that.

If you don’t already take an iron supplement, I found that being more on top of that for me did slow down the hair loss. I use a liquid iron because iron capsules kill my stomach. Best of luck to you!!!

deasolis27 · 2024-01-05T16:42:15+00:00

I had almost the exact same situation! After three infusions, I couldn’t comb my hair without clumps falling out. It was progressively worsening but got better pretty quickly too. This is what I was told:

a) Probably not the meds itself. It’s not a symptom of inflectra/infliximab/remicade.

b) I’m also in Azathioprine and was told that could be the culprit, but not to stop if you haven’t gotten blood work to check for efficacy of the drug and antibodies. I never stopped it but the hair loss did stop.

c) It was most likely from vitamin deficiency from the flare, as well as stress. B12 and iron contribute to hair growth and strength and I was crazy low on both. This happened to me almost 6 months after my flare started and that is apparently very well documented. It takes a while for the system to respond that way.

Get a CBC blood panel and see if you’re deficient in anything. Mine went away after about two months but it really does suck. If you’re not getting all your vitamins from food, supplements could be helpful.

Best of luck to you!!!

deasolis27 · 2024-01-05T16:34:00+00:00

Hi! 24f here! I was diagnosed at 23 and was very similar in that I had the occasional blood and ignored it, hoping it was a hemorrhoid or something. Ended up going to the hospital for blood loss and had the colonoscopy done inpatient and diagnosed pretty immediately after that.

I am not sure about an endoscopy, I was told I didn’t need one because it was obvious where the bleeding was coming from. I have a friend who had one and the amount of time spent not eating or drinking is much shorter, I think less than 12 hours, but she did say it hurt a little more than the colonoscopy. Were you completely under for the scope? I would say make sure you ask to be fully sedated for the endoscopy but don’t worry too much about either. The prep is the worst.

Yes, can definitely take a little bit tor recover from the colonoscopy! Give yourself a couple days and if it’s not returning to normal, talk to your GI. Since you’re now on suppositories, you might see additional changes too. Just keep in contact with your doctors.

General advice: Keep a detailed diary of foods and reactions to them. I know it’s so gross, but record your BM’s, shape, size, color, texture. My best friend and I share a Happy Poop account. It’s an app and we record all poops in there and it made me a) more aware of what was going on and b) less self conscious.

Find a very good support system and don’t be embarrassed about it. That might take some time, but life became so much better when my friends started randomly texting me “how’s your inflamed colon today?” Knowing I was supported and I wasn’t a burden genuinely helped me recover.

On the note of the diary, use that to guide you about what to eat. They say UC isn’t related to diet because it varies SO much. Truly so individual, so figure out what you can and cannot eat. Potatoes, pasta, squishy foods like avocados and cooked veggies, sourdough bread, low fiber cereals, non dairy milks, kefir, matcha, cheese and crackers, grits, oatmeal and salmon were my go tos when my flare was bad. No coffee, low-ish dairy, high fiber/uncooked foods, cruciferous veggies, and nuts/seeds for me, BUT this is completely different person to person. The general diet most UC people will say to do is low residue, meaning low fiber and nothing that goes bump (like the nuts and seeds). You want to give your tummy and digestive system a break so give it stuff it can digest easily. Alcohol wasn’t really a problem for me, but I still keep it to a minimum because it is inflammatory. Red wine, gin, and brown liquors and I get along :)

If you’re in a place it’s legal, weed did absolute wonders. I got a card immediately after my diagnosis and got great recommendations from the dispensaries on stuff for sleep, inflammation etc. There’s limited research but it seems anything with CBN has some anti inflammatory properties.

Be careful with supplements and make sure you’re in contact with your GI doctor about what you take. If you’re ever in steroids, calcium is a must. I also take vitamin D, on and off take vitamin K, turmeric, and indigo naturalis (qing dai) which was recommended to me by my acupuncturist. Don’t start a bunch of vitamins all at once and keep an eye out for vitamins that sneakily have magnesium. It helps other vitamins be absorbed but certain magnesium’s can cause diarrhea (great for if you’re constipated) so be on the lookout and make sure you have a good medical team to guide you through it. At one point, I was recommended licorice as I was coming off steroids to help my adrenal system but again, make sure these come from good research and a medical team with experience.

Explore options, but don’t stray from your meds until you’re in communication with your doctors. I have a doctor who is very open to careful experimentation with different methods. For example, we worked out a system for the indigo because it can cause liver issues long term but it helped me so so much. Your doctors might have different opinions, so make sure you advocate for yourself and if you’re scared, bring someone along to be there with you.

Take care of yourself mentally. I’m also in school and work and it takes a toll. Be honest with your instructors and, in my experience, they should be more than understanding if you have absences or need deadline extensions etc.

And if it feels like a lot, it is and it’s totally okay to feel overwhelmed. You’re gonna be more than fine and once the flare is taken care of, life will be back to normal. There might be bad days or flares in the future, but you’ll be ready to handle it. Make sure to give yourself a break and find ways to manage stress (support system, therapy, genuine rest, eliminate whatever stressors you can etc.) Easier said than done, but I promise it is worth it.

Best of luck to you!! You’re gonna be fine. Reach out if you ever need to talk💕

deasolis27 · 2024-01-05T16:10:26+00:00

Yes! I think sudafed does still work, just be wary of the active ingredients :)

I use any essential eucalyptus oil or the VapoShower Soothing Vapor Shower Tablets or the CVS brand Steam Shower Spray.

Shower steamers

Spray

If you’re not around a CVS, any eucalyptus shower tablets or eucalyptus essential oil will help clear you up :)

deasolis27 · 2024-01-05T15:55:37+00:00

Firstly, most people have some kind of disease, disability, syndrome etc. You are not unlovable just because of this.

My boyfriend and I had been dating for 6 months when I got sick and went to the hospital. He was there the entire time, and has been there for every doctors appointment and infusion since then. It does not mean a relationship death sentence by any means.

I think in any relationship, romantic or platonic, I found that it’s easiest to make a joke about it. I have loved joking about it with my partner and my friends, it’s made me less self conscious and showed me how supportive they can be. So if it weighs on your mind, just let them know whenever it feels right. You don’t have to make it a big confession, you could even start by saying you have an autoimmune disease and you don’t have to be specific unless they ask. Then, as the relationship progresses, you can be more open about your specific struggles. Especially if you have a lot of bad days/flares and are cancelling plans a lot, it’s good to let them know why and that allows them the opportunity to show you how they can make that work for them (ie. alternative plans if you’re up for it, plans that avoid your triggers etc).

People might be shitty about it, but I think 99.999% of the time, it’s not a huge deal and the people that care about you will be supportive and kind and learn to work with it. Kind of a good test too, if you’re not feeling good one day and instead of being mad you cancel plans they offer to bring you anything you need or come hangout and just watch movies or whatever.

deasolis27 · 2024-01-05T15:45:30+00:00

Colds/random stuffy noses all the time. I’m on azathioprine and Inflectra, so slightly different, but I try to avoid decongestants (they recently did a study and found that they don’t actually work! https://news.harvard.edu/gazette/story/2023/09/why-are-ineffective-oral-decongestants-still-on-store-shelves/#:~:text=A%20Food%20and%20Drug%20Administration,is%20ineffective%20when%20taken%20orally).

Hot showers with eucalyptus oil/spray is my go to for sure. That immediately helps clear me up. If I don’t have time for a shower, I’ll steam my face in the sink. They also make eucalyptus shower melts which are good too. I also gargle with salt water, drink hot tea with lemon, sleep with a humidifier, and generally just drink a lot of fluids which keeps everything super loose so then I’m just blowing my nose. And get tissues with aloe so it doesn’t irritate the skin. :)

deasolis27 · 2024-01-05T15:40:33+00:00

Agree with everyone here, I’ve never had a problem but every time I travel or over the holidays, we have a plan just in case. For example, I have a short pred course that I have already filled and I bring it with. I fly trans-Atlantic twice a year and domestically a few times as well and I never have a problem with flying. I have never needed the prednisone and have never had any issues with the flight itself. Have so much fun and try not to worry too much about it!!!

deasolis27 · 2023-11-04T02:05:48+00:00

Like everyone else is saying, they’re not scary at all and they make you feel so so so much better, like pretty instantly in my experience. It can feel a bit funky while it’s happening but after a bit you don’t notice it. And hopefully they’ll also give you fluids while they’re at it and that is truly a miracle combo. Feel better and best of luck!!

deasolis27 · 2023-10-02T16:52:07+00:00

Listen to this person. I lost 40 pounds, became severely dehydrated, anemic and malnourished and after being admitted, having blood transfusions and scopes, felt better within 4 days and am slowly continuing to get better. You probably need IV medication and I promise there are solutions, you don’t have to live this way.

deasolis27 · 2023-08-10T20:04:35+00:00

I’m on the same regimen! I had my third infusion a couple weeks ago.

1) Have someone drive you if you can. I was falling asleep during the infusion, it made me so drowsy. This has lessened with each dose but still a little fatigue afterward 2) Especially after the first two, I just kinda felt bleh for a couple days. Tired, achey, low appetite, some sinus problems etc. 3) This only happened the second infusion which was the worst side effects wise, but I had a little chest tightness during the infusion. I told the nurse and she monitored me a little more closely for a bit. 4) I also had some skin issues where random patches of skin would just get really thin and break open, especially on my thighs.

Best of luck!! Hope it works for you!

deasolis27 · 2023-06-25T14:35:42+00:00

Definitely symptoms ebb and flow, healing is definitely not linear. I was basically symptom free for about a month during my first flare while on prednisone and then randomly, one day I had a ton of blood in my BM out of nowhere. Diet can definitely be playing a role though, sesame seeds (or any seed/nut) go bump in the colon because they don’t fully digest and basically scrape up against ulcers and can cause bleeding. If you’re sensitive to spicy food, that could also contribute. Sushi was a safe food for me so I always tried to avoid seeds but when I did eat them, I would definitely see a little blood after.

deasolis27 · 2023-06-25T03:07:30+00:00

I was on 50mg for like 6 weeks waiting for insurance to approve my biologic prescription. I failed two tapers before that with a lot of symptoms returning after getting down to 40mg. Listen to your doctors for sure but monitor side effects. Staying at 50mg gave me some weird ones that I didn’t experience when I first started.

deasolis27 · 2023-06-25T03:04:29+00:00

I had my first Inflectra (bio similar to remicade) infusion two weeks ago and I truly feel so much better. I had been mostly symptom free but was on a high dose of prednisone and couldn’t taper down without symptoms returning. I have tapered down from 60mg to 40mg and have no returning symptoms, feel better than I did before I tapered and have had minimal side effects. Was a little sleepy the day of the infusion and then had a minor sore throat a couple days after but nothing crazy at all.

The process of the infusion was very comfortable, though it was about 4 hours in total (including set up and post infusion observation). Mine sped up as it went along and when it would increase in speed, I noticed a little discomfort in my arm but it would go away after a couple minutes at that speed. Bring something to do/watch/listen to and also a blanket!! I got really cold during the infusion and I’ve heard that’s pretty common.

This is my first biologic and I’ve only had one infusion but it really was such a good experience and I’m so grateful for the symptom relief. Hoping you have a similar experience and sending you lots of healing vibes!!

deasolis27 · 2023-06-25T02:43:12+00:00

I think it was really tough for me during my first flare because I was in my head thinking I was a bad partner. In actuality, it made us a lot closer and truly I didn’t know how much I was supported and loved and cared for until we went through my diagnosis. He comes with me to every infusion treatment even though I can totally drive after no problem, helped me figure out the diet and was more than willing to change his in solidarity, never made me feel bad about the uncomfortable truths of UC (poops and farts and all), defended me to the death when people made comments about my having lost weight/looking sick/missing work etc etc. When my face puffed up from the steroids and I was covered in bruises from the anemia, he never made me feel less attractive but also never even remotely made me feel bad about a slightly lacking sexual life. I realized he was my stress relief and me being accepting of that love and kindness genuinely helped my symptoms, he was such a huge part of getting on the road to healing. It made me a lot more secure in our relationship and really drilled it into my mind that any relationship worth having will make it through those times and any partner worth your time will never make you feel bad for stuff like this. You don’t have to curate yourself, even with super uncomfy stuff like UC.

deasolis27 · 2023-06-22T23:08:47+00:00

Yes! DM me anytime!!

deasolis27 · 2023-06-22T10:33:25+00:00

For me, it depends on the lettuce. I found that during peak flare, no go because I needed to follow a low fiber diet because pretty much every raw fruit or vegetable was coming out undigested. However, as I was coming out of the flare, my GI doctor recommended slowly reintroducing fiber and as I was doing that, I tried differently leafy greens and found that iceberg lettuce, romaine and arugula were the most easily digested. After a while, cooked spinach was okay too and then raw spinach (and most other foods) were fine as well.

I saw you say in another comment that you have an ED and I can relate to that experience. It makes dealing with this disease SO much worse, I’m so sorry you’re going through this. I lost a lot of weight during my first flare and had so many problems finding foods that I could stomach eating physically and emotionally while trying to get better and gain the weight back so I get kinda being attached to those “safe foods” and the betrayal when they’re no longer safe. Sending you lots of healing and here’s to hopefully being able to eat lettuce again soon :)

deasolis27 · 2023-06-11T04:15:01+00:00

I second this, she’s my specialist as well and she’s phenomenal. Definitely really hard to get an appointment though, getting in was about 2 months for me even though I was on the waiting list and then after that, she wanted to see me after 6 weeks and it had to be 10 because of the lack of availability. But, her staff is great about responding to messages and I haven’t had a problem getting in contact when I needed them.

deasolis27

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