100% agree that the MTX works better than imuran for inflammatory arthritis. I have not been diagnosed with a separate condition, but back in 2020, my GI referred me to the rheumy due to joint issues...
I wonder if it is from the Humira. I developed psoriasis after maybe 1.5 years on an Inflectra/Imuran combo, buuuuuut it runs in my family -- my dad, aunt, grandpa, brother. Psoriasis is actually the...
It seems to vary by org/state, which is insane. If you want to donate, call up your local place. We're in a blood shortage, so if you can, please do! I got 13 units this summer, so I am not allowed...
UC isn't on any of the lists I have seen, but some of the biologics are....
Per that link, if you are immunocompromised, you should get three FULL doses, and then 5 weeks after your third full dose, you will get the BOOSTER, which is HALF. So, our series is 3 primary shots,...
Didn't see this elsewhere, but the CDC updated its guidance for people who are moderately or severely immunocompromised. Such individuals should get three full dose shots, and then 5 months after the...
I don't know your situation, but the temporary ostomy is not too bad, especially in comparison to severe disease. I think it's really important for OP and others to speak to people who have had the...
I miss my 2 years of remission with an Inflectra/Methotrexate combo. It was nice to be "normal" outside of an hour infusion every 4 weeks. I did not really have a choice but to have surgery this...
I did surgery in June, and the bag really isn't bad at all. It took some getting used to, but even with it, I am infinitely better off. I plan to do the next two steps for a pouch in the next 4-5...
You are probably fine. They wouldn't give me blood thinners for my clots until after I had surgery because I was bleeding out and needed a transfusion every ~2 weeks, but after surgery, they put me...
100% all the time. As I did before UC, and continue to do now that I am off the biologics post-colectomy, I only went to salons that have good reviews and good hygiene. I didn't change any of my...
I get very similar joint issues -- hands, feet are slightly slightly swollen and stiff, and oftentimes my hips and knees hurt, too. I take 15mg of methotrexate a week and it works well. Everyone...
Yes! Had my surgery late June and when I woke up the next day, I felt so much better and healthier and like this toxic thing had just been removed....
Hi all -- the ileostomy is going well and my QOL has definitely improved post-colectomy. I'm doing the 3-step procedure, so I still have my rectum, which is, unsurprisingly, unhappy. I need to pass...
CVS, at least in California, is giving the third doses as of today. I am getting mine later this afternoon. I was on methotrexate, either Inflectra or Entyvio, and either budesonide or 60mg of pred...
If you're experiencing a lot of rectal bleeding, I would be concerned and first consult with your IBD specialist and/or a hematologist. I say this as someone who did in fact develop blood clots last...
Absolutely and I would only get them at night....
I have chronic urticaria that started just before my UC symptoms showed up. All the specialists think it's autoimmune and related to my UC, if not simply another autoimmune condition. When my UC was...
I cannot believe it has been 20 yrs of stiff, uncomfortable plastic! They definitely are uncomfortable, especially when super inflamed. I also wish they did the tip in clear so I can more easily get...
WELP, 13 days post my fourth hospitalized, my leg, which had been sore in a "pulled a muscle" sort of way, was swollen, so off I went to urgent care, and of course, I have two blood clots in my leg....
Welcome to the club. I have failed everything else (except Xeljanz) and have been on Stelara since early April and we went straight to 4 weeks instead of 8 weeks because my flare is not even...
I will ask my GI about that. I am working with my IBD specialist at my Bay Area Kaiser, who is now consulting with the IBD specialist at West LA (they are both on CCFA), but neither has mentioned...
Unfortunately, no. I have heard very good things about the IBD center at UCSF though. I have Kaiser, so everything is in-house, and they also have a comprehensive multidisciplinary IBD team in the...
Hello....for I have returned with a flare from hell. On my fourth hospitalization in six weeks, and this last time I needed 4 units of blood (2 each of the other times). We're at the point if the...
Hi! The state actually put out an updated FAQ for this group last week: https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/vaccine-high-risk-factsheet.aspx It states: You just have to...
This is my second time on Uceris and it does...very little for me. It basically stops the urgency and most of the D, but none of the blood, mucus, tenesmus. And yes, I am very gassy and bloated. And...
Full body itching. I know this sounds weird, but my trajectory was weird. For a few years beforehand, every now and again I would have a week or two where I had tenesmus (did not know what that was...
cool cool so excited to have been put on MTX in February for my IBD-associated arthritis....
I'm rooting for you!...
I certainly don't touch poop when in SF. It's also in one particular area of the city that most of us avoid....
@UCer23 -- yep on the reasonable accommodations. I work from home most of the week, but my boss said that I can do full time while this all plays out if I just bring in a note from my doctor...
Use a mask if in a densely populated area or space, like public transportation. Wash wash wash wash. At the first sign of not feeling well, go to the doctor. As for me, my friend works at my state's...
Meh. Any medication that weakens the immune system is going to make a person more susceptible to infection, so it's not just biologics, but imuran, 3MP, etc. Sure, it's a risk/benefit analysis for...
Sara, I get migraines associated with my period. I'm on the pill, and the migraine usually shows up on Tuesday or Wednesday of the sugar pill week. It started in my 20s and would happen every month,...
Lialda gave me terrrrrible migraines. One of them lasted four days, and only broke when I went to urgent care and got an injection. I have no issue with salicylates at all. Because I could not...
I started to experience a lot of hair loss ~6 months in as a delayed reaction to the stress and trauma of my first flare. All my labs were fine. Chunks of it fell out for a few months (luckily I have...
I've gone, and it's been fine. In Spain, there was no need to watch for food borne illnesses, so that wasn't an issue. Elsewhere, I just am even stricter than I was about what to eat. I also always...
US -- almost all of my doctoring is over the phone/via e-mail. The IBD specialists at Kaiser have a dedicated PharmD they work with. The PharmD is in charge of managing my medication-related labs and...
Does your daughter take anything besides the Remicade? I ask because there are oral medications that can be taken for Psoriasis, as well as other biologics, if the Remicade is not helping, and they...
Same as Sara. Most infusion centers -- independent ones and in the hospital -- have reclining chairs so you can rest and put your feet back. I've always been able to take my "pole" with me to the...
How many mg/kg are you given and how often are your infusion? The max you can do is 10mg/kg at every 4 weeks. If you are there already, and your drug levels are this low, your body metabolizes the...
I also really dislike the people who think IBD = IBS and start talking to me about how diet and various supplements have really helped their IBS, etc. While some of us certainly have both, I think...
Psoriasis runs in my family (pretty bad for my dad and aunt, my brother just has it on his scalp). I did not start getting it -- and in two big patches on my scalp and in one armpit (yeah odd) until...
This may be my reality soon -- the inflectra is wavering. My GI was mentioning it two months ago, though. I'm on Kaiser so there is no fighting over off-label prescriptions....
you will have so much fun! Here are a few tips: 1. Disneyland now charges for the ability to reserve FASTPASSes on the app (it's like $15, but it's free at Disney World). It's called MaxPass. If you...
Sara -- when open enrollment starts, they will post all the plan information on https://www.opm.gov/healthcare-insurance/healthcare/plan-information/plans/. But what you can do is call each company...
Sara -- are you a federal employee? Now that you have the infusions, you might want to consider researching the different plans available to you since open enrollment starts in October. There may be...
Sara -- that doesn't mean it isn't working, since you are still in the loading phase and you just got off of prednisone. Once you're out of loading, they may also need to adjust the dosage and the...
I am surprised they don't have you check the med every time they give it to you. When I go in, they show me the bag and have me confirm it says my name, birthdate, drug name and dosage. They also...
omg do you have an option of a different infusion center? that is so sketch...