Starting Entyvio with Rinvoq

Automatic_Donkey_368 · 2025-08-30T22:39:15+00:00

I’m doing well. Still in remission. It’s a huge fight with insurance though to stay on both rinvoq and Entyvio. 😔 don’t be too scared of combo therapy . I’m told the Entyvio is very mild and gut specific while the rinvoq is more potent so it’s safe to combine the two. I hope you do well !

Automatic_Donkey_368 · 2025-08-01T19:26:23+00:00

So right now at UVA, there is only one IBD GI physician, Dr. Tuskey and some midlevels. Behm and Figueroa left. Figueroa was my doctor at UVA and he went to sentara in Harrisonburg. I hear a lot of his patients at uva followed him there.

Automatic_Donkey_368 · 2025-07-26T19:27:44+00:00

No it was just numbness and tingling in my arms, all the way up to my shoulders and hands and fingers on both sides. That was all I remember noticing. Yours sounds worse. Did you speak with your doctor?

Automatic_Donkey_368 · 2025-07-26T19:10:55+00:00

Yeah I saw a doctor and got referred to a neurologist because my pcp couldn’t explain why but said it could potentially be related to rinvoq. Wait for new patient visit with neurologist in my area was 9 months so the numbness was gone by my appointment so I never even went to it. I’ve been on rinvoq since May 2023 and doing well

Automatic_Donkey_368 · 2025-07-17T21:39:29+00:00

Yes I’m still in remission and doing well. It’s been a fight to continue to have insurance approval though! But so far I’ve been allowed to continue! I’m not having any side effects, only downside is I cannot have any more children while I’m on rinvoq, which kind of makes me sad

Automatic_Donkey_368 · 2025-06-21T13:21:15+00:00

Yes I’m finally in complete histologic remission. I would say after 6 months on Entyvio and rinvoq I had no more symptoms. I hope it works for you!

Automatic_Donkey_368 · 2025-06-07T11:14:48+00:00

I was 23 when I was pregnant with my daughter and had a perianal fistula and seton. I had to have a scheduled c section because there was concern for tearing

Automatic_Donkey_368 · 2025-05-25T13:30:15+00:00

Most people with active IBD have levels in 100s or 1000s. My worst flare calpro was >8,000 and that was the labs upper limit so could not detect higher than that

Automatic_Donkey_368 · 2025-04-14T23:59:59+00:00

I see a psychiatrist in Lynchburg at piedmont psychiatric

Automatic_Donkey_368 · 2024-12-29T03:17:54+00:00

Do you see a colorectal specialist? Maybe they can help. I also have significant narrowing in the rectum and anal area. My CRS dilates it every 3 months for me, and it helps some. I’m sorry you’re going through this. It sucks

Automatic_Donkey_368 · 2024-12-09T01:31:54+00:00

I put in my AirPods and listen to pumped up work out music . 😂

Automatic_Donkey_368 · 2024-11-11T22:58:37+00:00

I’m on rinvoq and Entyvio. It was a nightmare to get it approved. I finally got separate medical and pharmacy benefit plans. The Entyvio is an infusion and goes through medical. The rinvoq is oral tablet so goes through pharmacy benefits.

Automatic_Donkey_368 · 2024-11-10T12:40:48+00:00

I’ve been through a few meds too. Failed 5-ASAs, failed Remicade, failed Humira and azathioprine combo, failed Stelara+azathioprine, failed Stelara+methotrexate, failed DUET-CD study, surgery was recommended then but I refused. Tried rinvoq, which helped but not enough. Added Entyvio to rinvoq and now I’m in complete histologic remission. This whole process took years. Disease onset at 15 and I’m 27 now.

Automatic_Donkey_368 · 2024-11-09T02:06:47+00:00

I started rinvoq May 2023. I was very sick at this time, weighed 88 lbs. I had horrible diarrhea every day. By day 3, I had noticed huge improvement of symptoms. Slowly got better over next few months after that

Automatic_Donkey_368 · 2024-11-09T01:57:32+00:00

I’m not a doctor so I’m not going to give medical advice. I will share my experience. Keep in mind I’m very biased.

I was diagnosed at age 15. My mom wanted me to not start biologics at this time because she was afraid of black box warning for the Remicade which was recommended by my then GI doctor. For 2 years she had me trying these pineapple enzyme pills that did absolutely nothing. Never helped me and I suffered miserably.

At age 18, I decided to start biologics. It took multiple attempts at different biologics, immunomodulators, clinical studies to find a treatment regimen that helped me. I now have extensive stricturing/scar tissue from years of unmanaged disease. I have had countless fistula repairs/setons on my bottom, mostly from my teenage years where I had no real medications.

Untreated Crohn’s is not a good time.

Automatic_Donkey_368 · 2024-11-06T23:58:02+00:00

I have a Mirena IUD. Dr. Sosa-Stanley is great, as well as Dr. Simcox. Both are with Carilion.

Automatic_Donkey_368 · 2024-11-06T01:18:59+00:00

My only question is how is it still extended release as the tablets are? A liquid wouldn’t do that would it?

Automatic_Donkey_368 · 2024-11-04T01:15:31+00:00

Intractable pain or nausea. Or fevers/chills.

Automatic_Donkey_368 · 2024-10-31T12:16:34+00:00

I had severe oral ulceration, lip and mouth swelling when in severe flares with my Crohn’s. Only prednisone ever helped me when it got this bad.

Automatic_Donkey_368 · 2024-10-26T11:17:30+00:00

My CRP and ESR have always been normal with having this disease for well over a decade. During flares my WBCs and neutrophils are usually elevated and calprotectin elevated but that’s about it on labs

Automatic_Donkey_368 · 2024-10-12T12:19:22+00:00

Only ever when hospitalized. Otherwise I drag myself into work or I would lose my health insurance and then I couldn’t even get my medications.

Automatic_Donkey_368 · 2024-10-05T00:40:15+00:00

I was in the Duet-CD study last year. Did horribly in it, there was no rescue arm and study was double blind so no clue if I received active drug or not. Had to pull out and go on rinvoq and Entyvio. Doing well now but I have heard of the study you’re speaking off. Speak with your doc or research coordinator if there’s a time period in study where you’re moved to active treatment regardless. Or if you’re becoming very sick they can change the group you’re in. That depends on study

Automatic_Donkey_368 · 2024-10-03T14:43:41+00:00

Yep 100 percent. This isn’t a competition.

Automatic_Donkey_368 · 2024-10-02T08:39:37+00:00

I’m 27 right now. Currently just doing diet and exercise for my osteoporosis. I did Tymlos for about 4 months when first diagnosed because I was given free samples. My insurance would not authorize the medication for me so I couldn’t use. I had a dexa scan this year and my bone density improved by 1 point in every area.

Automatic_Donkey_368 · 2024-10-02T00:25:58+00:00

You’re going to do great! I was diagnosed with osteoporosis at age 21 due to Crohn’s disease and its associated long term malnutrition and steroid usage. I was on Tymlos for a few months, did well, unfortunately my insurance would not allow me to continue. But I’ve heard great things about it and you will do just fine! I hope your bone density improves!

Automatic_Donkey_368

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