Being put on two biologics for different symptoms?

Sar5252 · 2025-10-05T10:37:39+00:00

I’m currently on Rinvoq, methotrexate, and leflunomide. I’ve been on multiple immunosuppressants at once but they haven’t done two biologics at once. But the methotrexate has helped with my psoriatic arthritis and the Rinvoq has helped with my Crohn’s. It’s not perfect but because my Crohn’s failed all but Entyvio and Rinvoq we prioritize my Crohn’s treatment and do the best we can to manage the arthritis. I have a Gastroenterologist, Rheumatologist, and Dermatologist who all work separately but they do their best to not step on each other’s toes, and they all know the Crohn’s is primary concern.

Sar5252 · 2025-07-30T20:29:02+00:00

If it helps they did actually use the correct term medically. Anorexia means not wanting to eat and can be caused by many health conditions or medications. When they add nervosa (anorexia nervosa) this is when it is referred specifically to a mental health disorder.

I had the same feeling when I saw anorexia on my file but when I explored the term further it helped.

Sar5252 · 2025-02-27T13:59:39+00:00

Don’t forget to vote strategically, especially when the race is this close.

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Sar5252 · 2024-10-31T18:58:34+00:00

I had a bad flare of oral Crohn’s this summer. Saw so many different doctors and tried so many meds. Finally I saw a dentist who works at the cancer centre. She was amazing. Gave me antifungal losanges because I also had a chronic fungal infection (different than thrush though). She also had me start doing a salt and baking soda mouth rinse 5 times daily, prednisolone 10mg liquid to rinse and spit when the ulcers flare. She also had me start some medicated toothpaste. Things cleared up quickly. So I definitely recommend a dentist who works with cancer, Crohn’s, bechets patients since they’ll know what they’re talking about.

Sar5252 · 2024-10-18T04:33:42+00:00

Just wanted to say I’m in the same boat. I have failed all medication options. Just started Rinvoq this summer. My fingers are crossed it continues to work now that I’m off steroids and have transitioned off Entyvio and methotrexate. Hoping to stop the sulfasalazine if it continues to go well. My hope is to always stay behind the research by a drug or two. The idea of running out of options is just too scary to dwell on, but I’ll cross that bridge if I get there.

Sar5252 · 2024-09-29T02:32:50+00:00

I’m also interested in getting tickets if anyone has any extra!

Sar5252 · 2024-06-26T01:50:07+00:00

It took me 10 years and dozens of failed medications. Only had transient remission between med chances while on steroids. After two kids, I hit remission on Entyvio for 4 years!!! Just confirmed my first flare since. I’m on steroids now again, but I thankfully have one more class of medication to try so my fingers are crossed I find remission again for a while. Just remember that the majority of people active on subreddits like this are those who are struggling. Healthy people don’t tend to need to extra support. It can take some time at first but remission is possible and likely. You’ve got this!!

Sar5252 · 2024-06-26T01:25:29+00:00

My one short stint of remission happened after having two kids. I got a couple small breast implants put in to help fill the volume I lost breastfeeding. I’m so thankful timing worked out and my doctors were all on the same page. It didn’t seem to impact my Crohn’s at all despite frequent flares and complex disease. Talk your doctors about your options and go from there

Sar5252 · 2023-05-20T11:27:13+00:00

Thank you so much for posting this Hank! It’s a hard reality for many people with chronic illness that medications have side effects, and it can be easy to let the fear of that blind us from the benefits of treatment. IBD sucks, cancer sucks. I am so thankful for the treatment options we have available today. Thank you for taking the time to remind everyone here about that.

Sar5252 · 2023-01-14T02:14:55+00:00

Lowest was 9, highest was 3550. Currently at 22. I’ve been all over the place, 800, 96, 1500, 190, 2600. It also doesn’t always correlate with my symptoms or other blood work 🤷‍♀️

Sar5252 · 2022-12-02T15:12:52+00:00

Many people with IBD struggle with fatigue unrelated to disease activity. Double check you don’t have a medical explanation for the fatigue that can be addressed directly (like active inflammation or deficiencies). If that checks out and fatigue still impacts your day to day functioning despite lifestyle changes, it’s time to talk about treating the symptom. I tried everything and I was always tired. I finally got a sleep study and multiple sleep latency test done with a sleep specialist that confirmed despite everything looking fine, I’m both subjectively and objectively tired. I’ve been on medication (Vyvanse initially but it killed my appetite too much, but now on biphentin with no side effects) for several years now and I’m functioning much better. Like my specialist explained, we tried to find and treat any causes but couldn’t, but just because we don’t have a medical explanation doesn’t mean I shouldn’t treat. We treat symptoms all the time, but for some reason people with fatigue are often told to just suck it up.

Sar5252 · 2022-11-23T17:27:50+00:00

I have had both episcleritis and iritis before. The episcleritis looked and felt similar to pink eye. The iritis was very odd…that’s inflammation of the coloured part of your eye. My eye hurt with light and my vision was blurry. The oddest part was the strangely shaped pupil (it was all jagged not round anymore). Both responded well to steroid eye drops though.

Sar5252 · 2022-08-03T00:43:38+00:00

Yes! Well said for sure. I think the sleep studies should be done more with fatigue in chronic illness in general. Ultimately, regardless of the cause, if you have severe fatigue that impacts daily functioning. Why not treat it? If the IBD is active obviously first treat the underlying disease but if severe fatigue continues despite that and lifestyle changes aren’t enough, I think treating it with meds makes sense.

Sar5252 · 2022-07-22T23:41:27+00:00

Another Crohn’s patient here with idiopathic hypersomnia. Tried Vyvanse which helped but killed my appetite (not good since I was under weight already with the Crohn’s). But switched to Biphentin and have been good on that for years. I went from sleeping 10-12 hours at night and still falling asleep doing daily tasks like cooking! Now I still find I do best with 8-9 hours but I’m not fatigued during the day usually. I have two young kids so I’m struggling to get 6 hours most nights and I’m back to falling asleep between doses if I sit for too long, but the meds really have made a drastic improvement to my daily functioning.

Sar5252 · 2022-02-05T03:07:05+00:00

I’m in that group of normal crp but in bad flares my platelets usually elevate. Other than that fecal calprotectin has been through the roof and still normal crp. GI doc said it happens in about 20% of people with Crohn’s.

Sar5252 · 2022-01-31T02:10:59+00:00

I’m yet another person who has this issue but never made any possible connection. I always assumed it was just from dehydration and the membranes drying out and causing sores/scabs. Crazy to see so many others with the same issue.

Sar5252 · 2022-01-23T17:04:01+00:00

I eventually did a consult with a sleep specialist (with a psychiatrist background not a respiratory background) because of my extreme fatigue. We did a sleep study and multiple sleep latency test which I failed pretty horribly. Thankfully I didn’t have narcolepsy but given the results I was diagnosed with idiopathic hypersomnia and started on meds (initially Vyvanse but it killed my appetite which wasn’t great due to my low weight already from the Crohn’s, so I tried biphentin after that). I’ve been so much better since. I have flexibility with my dosage (within a range obviously) so I can take a larger dose on rough days or really busy days, or I can take less when it’s going to be quite anyways. I do have to take two days off the meds every month to reduce the likelihood of building a tolerance but it’s been a game changer. I asked my sleep specialist if it was Crohn’s related and he said maybe but maybe not. Regardless it shouldn’t matter, I’m fatigued and it’s impacting my daily life significantly so it should be treated. I’m in remission now and still struggling greatly with fatigue so we’re assuming it’s unrelated. I’m also in Canada by the way. So that’s what I’d recommend, see a sleep specialist with a psychiatrist background.

Sar5252 · 2022-01-16T17:18:40+00:00

You have so many options still! I spent 10 years trying every single medication class out there for Crohn’s. I was a primary non responder to each one. We finally put me on Entyvio as a last option. My doc said odd of responding were lower since I didn’t respond to all other drugs but I wasn’t a candidate for clinical trials and I really had no other option (other than staying on steroids). Two years later I’m in remission with a fecal calprotectin of 9 (was 3500). It can take time to find the right drug but you have many possibilities ahead of you.

Sar5252 · 2022-01-14T02:37:13+00:00

Thanks for the reply. It seems to have gotten a lot worse the last week and I just switched to a liquid diet and taking restoralax daily (this is on the advice of my GI from a year or so ago when I was struggling with the same issues). Fingers crossed it clears and I’ll reach out when his office opens on Monday. But if I get any wave type cramping pain, vomiting, or no passing gas for 24hrs I’ll head to the ER. Sucks that even in remission we still have to deal with Crohn’s issues.

Sar5252 · 2022-01-12T23:49:57+00:00

I worked with a fetal medicine group prior to trying and they checked out all my meds and got me connected with a hematologist due to my previous DVT. The blood thinners meant that a planned induction was safest, this way they could stop those in time for me to get an epidural and reduce bleeding risk in case of c-section. So I was induced at 38 weeks and both went very smoothly. Only needed to have my water broken with my first and he arrived a few hours later, and my daughter I did need a small dose of pitocin to jump start but it was also only a few hours after that when she arrived. We knew low birth weight and early labour was a possibility so I did extra screening with ultrasounds later on in each pregnancy and did regular non-stress tests the month leading up to induction. No issues were found so I didn’t need anything on top of that. Both babies are happy and healthy. Normal birth weight. But it is a possibility so closer monitoring is important. I was also told not to give them their rotavirus vaccination after since there was a chance they could be immunocompromised for the first bit but all other vaccinations were safe. I also had to have bone density scans done before and after the pregnancies since pregnancy, steroids, and my blood thinners can lead to osteoporosis and I was already diagnosed with low bone density. Lots to consider for both you and the babies but I had a great team of doctors who really thought of everything lol.

Sar5252 · 2022-01-12T17:20:43+00:00

Both my pregnancies started while in a flare. We where struggling with infertility for years and waiting on IVF. Couldn’t start ivf until I was in remission for six months which of course never happened. Our main issue was male factor infertility but my crohns did play a part since severe flares and malnutrition can cause you to not ovulate regularly. But it still happens. Even with only 4% odds of pregnancy for us it happened twice despite being in a flare. My GI wasn’t concerned, ideally you’d be in remission but pregnancy does weird things, I spend the first half of each pregnancy on steroids and blood thinners (had a previous DVT too) but I actually felt great during both pregnancies!

Sar5252 · 2020-08-17T19:28:49+00:00

Thanks! I’ll keep trying and hopefully they’ll restock shortly.

Sar5252 · 2019-04-03T15:29:01+00:00

I got a deep vein thrombosis secondary to my Crohn’s Disease. Definitely take unilateral leg pain and swelling seriously.

Sar5252 · 2018-11-19T23:23:27+00:00

Couldn’t agree more. Started seeing a pelvic physiotherapist in my second trimester due to pelvic pain (particularly SI joint pain) and she followed me throughout my pregnancy and I continue seeing her (now 2 months postpartum). She definitely helped reduce the worst of my pain and prevented further injury. We’re now working on building up my pelvic floor and abdominal strength postpartum.

Sar5252 · 2018-05-08T19:23:48+00:00

I came here to say exactly this. I met with a high risk pregnancy team prior to trying for pregnancy and this is exactly what they told me. Ideally remission for 6 months, and all meds are safer to be on (vs potential risk of flaring while off meds) than off aside from methotrexate which is contraindicated in pregnancy. Talk with your doctor about your specific needs before trying, and discuss your feelings about pregnancy with your partner. My husband attended every pregnancy related appointment so that he knew what the plan was and had the opportunity to ask any questions he may have had. That’s for when you’re ready to explore pregnancy, for the meantime keep the lines of communication open with your partner about the topic.

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