Rinvoq no more…

Hi, BC-- I've been thinking of you 'cause you turned absent for a while. That's bumming news about your biopsy reports. Was that a 1st time for cryptitis? Hopefully a change in med will get rid of it without causing you any return of side effects. Good luck with the insurance coverage issue, and best wishes for some holiday enjoyment this season. <<>> Cyberhugs!!!! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Old Hat, I still stop by from time to time but was doing okay and even went out of town several times this year. This was a surprise honestly since my symptoms always correspond with inflammation. I have never had it where I am not having symptoms and inflammation at the same time. It is scattered- cecum, transverse colon and rectum but the other areas look great. Hope you are doing well and having fun!

Beave, that is quite helpful! My doctor came out of the scope happy so I figured I was safe! Told me to go on my way and have a Merry Christmas. I was totally shocked that it said “active colitis” in several spots a week later.
I do have mild aching/tenderness in my right side and by my belly button but it has been like that for years. The doctor who scoped me last year did not take biopsies so I wonder if I had this last year, too. The problem is that the 30 mg of rinvoq causes me even more side effects- chest pain, severe acne, yeast infections (vaginal, head, neck), LDL over 400. I still use those vaginal supps twice weekly because stopping means another dose of that oral medicine (cannot remember the name). I am on 3 acne medications at 35 which just sucks. Rinvoq hasn’t been an easy drug to be on for me- not like Simponi was for me. I am actually not opposed to change if it means these side effects will stop. It’s just the whole infusion process that scares me a lot. You made me feel better though with the grading system. I wasn’t sure if he would make me change or not but I’ve been on it 1.5 years so far. I guess he wants it to look perfect by that time.

Oh Bacon Girl, it is always good to see you but not when you have upsetting news. I have no advice for you but I am awesome at sending virtual hugs!!! So here I am hugging you right now and whenever you feel like you need one, there it is. I am also sending vibes that you can avoid the bad infusion centre, or else that everything there will go super smoothly this time.

Geezer, I am glad you are doing okay despite the other health problems. Long haul covid is so hard. I had it for 9 months and ended up quitting my job at the time because the migraines were so severe. I was able to help combat it at the end with NAC supplementation. It helped immensely!

Serenity, ahh you brought tears to my eyes. Thank you for your hug! It is always hard to think that I could go backwards by making the switch. That is what scares me most. The tiny bit of active UC doesn’t bother my daily life at all. I just hope my doctor knows what he is doing. I do not want to spend next year flaring.

Mom, thank you! It definitely sucks but I agree that rinvoq has been a hard drug to be on. It’s just that we get used to dealing with all the side effects just to not be living our lives on the can and in constant pain. I’ve had the disease for 19 years now so I know what I can handle and my standards are extremely low- just not pooping my pants and able to leave the house confidently. I haven’t had to deal with any of that in 2024 and don’t want to do that next year either. My doctor said these new drugs take about 4 weeks to work so I hope since my colon looks visually okay that it can handle waiting for it to kick in. I have been on prednisone every time in the past when starting a new biologic/step 3 drug but my doctor said that isn’t necessary right now (I for sure hope it doesn’t get to that point).

I can empathize with your situation so much. I have been on Entyvio since 2018 and am doing very well on it symptom-wise. I have spent most of this time in clinical remission but not endoscopic remission as there is usually a small amount of inflammation on scope. Like you, I lead a very normal life and I am concerned about having to change or add meds because I have been doing pretty well and I have no noticeable side effects from the Entyvio. I wonder what the risk/reward will be if I switch to something else. What if I switch and end up doing worse? What if a new med gives me hideous side effects? My scope is in a few weeks and I’ll know more then about what’s currently going on in there and what my new doctor wants to do.

So although I don’t have any insight, I am right there with you in your situation and I hope we both end up on a good path forward. Keep us posted!

BG, my doc who I had loved left the state last year and I was quite literally heartbroken. On my last scope in July of 2023, she saw a small area of mild disease and talked about adding Azathioprine. Afterward, I read up on that drug and did NOT want to go on it. And because I was doing so well symptom-wise, I didn’t feel the risk was worth it unless they could quantify my risk of leaving things as is vs. my risk on the medication, if that makes sense. She left before we could make any treatment decisions. Things had continued on the same since then and I saw a new doc last March but he was not a tier 1 provider with my insurance (so more out of pocket) so, since we were preparing to move anyway, I decided to hold off on treatment decisions until we moved and I got another new doctor. (Had my doc not left I would have driven in to see her but I was not attached to this doctor and he cost more to see.) He agreed to leave things as they were and continue my meds until I transferred care. I saw my new doctor back in October and have a scope January 15th. She did not say what if anything she has in mind, I guess she’s waiting to see what the scope shows, but she did not seem to be a fan of the idea of adding the Azathioprine. I think it was beave who told me here that Aza is actually not recommended in combination with Entyvio. FCP done a few weeks ago was elevated and admittedly I have been having more issues lately though nowhere near full-blown flare territory as of yet. Still going about my life. I have had this happen before thinking I was going to start flaring and then didn’t. So it’s hard to know what direction this will go. Either way, something is going on in there and I guess I’m going to just have to see what and how she recommends we address it. My goal is to be on the safest/fewest meds possible.

My mom is currently on Skyrizi. She just had her second infusion and has not complained of any side effects. She had ulcerative proctitis for years and spent them all flaring because she was so resistant to the stronger meds despite my encouragement. She finally tried Entyvio but decided too early it didn’t work and quit. Then she tried Humira and it actually made her worse. Her disease is now further up in her colon so she agreed to try the Skyrizi. Apparently it also has a really good safety profile. I might consider that one if it’s recommended even though I’m not a fan of doing shots. For now it’s wait and see and hoping things stay ok between now and then. At least we live in a time when there are so many treatment options available I guess!

So sorry to hear BG! Also no advice— just sending the virtual hugs. These disease does suck!!!!

So…. Are skyrizi and tremfya both infusions? Or injections? Combo?

It's like a good news bad news thing about needing to stop Rinvoq. On the one hand it's been keeping you symptom free, but you have had a lot of side effects and haven't reached complete remission. If you weren't having the it would be a hard decision to switch meds, but it sounds like it's time to move on. Keep us posted on what you go with. I have been seeing more commercials for both meds lately.

I am stuck wondering how it’s decided to flat-out switch a med when it seems to be so helpful overall. If nothing else in the “lower level” arsenal has been tried in conjunction with it to get rid of the remaining inflammation, should that be the first line of defense? Why did my former doc jump right to adding Azathioprine? Could my medication maintain the improvement once we make it happen? Or is it assumed that even if that helped it would only be temporary and it makes more sense to just move on? If I was having the side effects you are I might even be relieved to try something else. But Entyvio has been great for me in that department so the thought of change doesn’t thrill me. If I start doing worse I’ll probably change my mind on that though!

Since I am already on drugs that lower my immune system and have to monitor liver function, etc., adding another that requires even more monitoring and more risks is not on my to do list. My guess would be that’s how you ended up with MRSA (yikes!). I have not been sick more than normal or had any identifiable side effects at all from my current regimen. Another poster (beave) also said though it’s helpful in conjunction with other biologics, Entyvio isn’t one of them. I’d have to be pretty desperate to try it or exhausted all other options and I don’t think we’ve done that yet. I’ve been doing the same thing for 6 years now. I haven’t had rectal meds in years. I mean, I’m not a fan, but it beats weekly blood tests, wrecking my liver, destroying my immune system, and making me nauseous (though I admittedly could stand to lose a few pounds, lol). I don’t even know my new doc would recommend it, I’m just curious why the first response is completely switching what has been beneficial overall or adding another dangerous med. Is there an in between that might work?

Additionally, how much do they talk about the role of women’s hormones in our disease? I almost always noticed a difference during that time of the month, started flaring due to pregnancy, and again a month after delivery. Perimenopause/menopause are now issues for me, so I’m in some kind of hormonal mess all the time now. I’m sure that’s affecting it, too. In any case, for me it’s going to be a risk vs. reward consideration in terms of treatment. Right now I don’t believe Aza is worth the risk for me.

With home infusions you are required to have an epi pen or anaphylaxis kit on hand. Whether your previous reaction would prohibit home infusion I don’t personally know. Do they know what ingredient caused it last time? I just thought it might help with your comfort level doing it at home. What happened to you had to be terrifying! It has its pros and cons, but for me I just have no real choice under our insurance. But thankfully I have had no issues. Either way, I hope you have no issues and it works for you!

Wow, you have been through a lot with this and I’m so sorry. I had just assumed by infusion you had meant one of the other infusion medications. (My only experience with IVIG was with one of my sons when he had transverse myelitis as a kid.). I have mild UC by comparison, never hospitalized for it, and always responsive to treatments. I think that’s also why I’m resistant to bigger guns, because I feel like it’s not really necessary at this point for me. Your situation is obviously much different.

For me, my periods were always regular and normal, but I would have bowel changes from a few days before to a day or two into my cycle. It turns out, after about 3 months with no cycle, I started getting one for Christmas (nice, huh?) which coincided with the troubles I’ve been having, so it’s probably related. D and urgency have always been my main issues and I suspect I either had microscopic inflammation or IBS long before I had my first flare and diagnosis. My issues really started with my second pregnancy. I only had diagnosed UC with my youngest (5th). For me, I started flaring at about 8 weeks after a 7 year mostly med-free remission. It was managed easily with Lialda, Canasa, and mesalamine enemas. Due to the naturally lowered immune system during pregnancy I did great until about a month after delivery. Maybe best remission I’ve ever had. When I failed to get to remission after delivery using the usual first line methods, I went to Entyvio and have been on it ever since.

Have you been checked for endometriosis?

I had my first at 23. If you wanted further investigation, I would recommend looking for a NaPro doctor because they look for the actual causes of problems rather than just throwing birth control pills at everything. My sister had undiagnosed endo that caused infertility, but she didn’t find that out until she saw a NaPro doctor in her 40’s. Such a shame because it could have been very different for her with proper treatment. The terrible UC probably doesn’t help anything for you either. Has surgery ever been suggested with the severity of your disease?

My only child having any issues so far is my 18 year old daughter. She told me a few months ago that she was seeing a little blood in her poop. No other symptoms. I didn’t think too much of it at first because my symptoms are obvious. We took a watch and see approach for a bit and then ultimately got her in to the doctor. Pending bloodwork and a FCP, the doc agreed to revisit in March if tests were normal. But then her FCP was over 700 so she goes in the week before me for a colonoscopy. I was really surprised by all this because she’s otherwise perfectly normal and I always associate this disease with the awful symptoms. I don’t know if it’s UC but I don’t know what else it could be, what other explanation there might be for it. My husband has psoriasis (which developed into psoriatic arthritis) and all the kids also have it except the youngest as far as we can tell so far (he’s 7). It’s very mild for all of them and none have ever had to be on any medication for it. In my family, my grandma had diverticulosis, my aunt has mild UC that she’s not on medication for, my mom had diverticulitis and part of her colon removed years ago, developed ulcerative proctitis after antibiotics, and now it’s progressed to UC. My sister developed hashimotos several years ago. My dad has rheumatoid arthritis. So there are a lot of autoimmune diseases in my family. Actually I think there is a lot of it period and have my thoughts about why that is but that’s a whole other discussion!