HealingWell
Search Close Search
☰

Has anyone switched from Entyvio to Cimzia and seen positive results?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/12/2017 12:14 PM (GMT 0)
Greetings all! My husband has suffered with Ulcerative Colitis for several years and has been through the ringer with treatments. Humira, lialda, etc. etc. etc. Most recently and for the past year, he’s been doing Entyvio IV infusions every 8 weeks. Just yesterday our insurance approved Cimzia and he is to start in the next week or so. Entyvio has been very effective for the GI symptoms but has not helped the associated joint pain and proctalgia at all. He’s super nervous to begin a new therapy but is anxious to finally get some relief. (His mother has Crohn’s and ended up doing a resection, his sister has UC, and he lost his father to colon cancer. Needless to say, he’s anxious about every facet of the disease and associated treatments).

Does anyone have any experience with Cimzia, specifically from a combined relief of GI and joint pain symptoms? How long did it take for the treatments to become effective? Are the side effects similar to those of Entyvio? As a couple in our early 40’s with 6 children (who’s lives we miss a lot of due to this disease) we welcome any information, advice, and direction!!

Thank you all in advance!!

Post Edited (Pam C) : 12/12/2017 5:35:34 AM (GMT-7)

Posted 12/12/2017 3:20 PM (GMT 0)
I haven't heard of any UC patients on Cimzia posting on healingwell. Do report back and let us know how it goes for him. I hope it is his solution!

Cimzia is used for other auto-immune conditions and you might ask on those forums to see how people have done?
Posted 12/12/2017 6:30 PM (GMT 0)
Thank you and I will report back for sure. I will check into that! smile I have real about a study done on UC patients and Cimzia. It started in 2010 and coincidentally, it’s due for completion December, 2017. I’m following that study and am anxious to see the results. My husbands GI Doc is confident that he will see positive results in both GI symptoms and joint pain, and says there’s research supporting it.

Thanks again and I will definitely post updates on his treatment. We start weekly subcutaneous injections here at home tomorrow. His last Entyvio infusion was on 11-22. Hope to see results soon!!
Posted 12/12/2017 6:41 PM (GMT 0)
I thought Cimzia was used for Crohn's more, but I don't see why it wouldn't be an option for UCers too. I hope he has luck. I believe i asked my GI about it and she said it was similar to remicade/simponi, and since I didn't have response to those, I was unlikely to respond to to it. It's a TNF blocker.

/www.healingwell.com/community/default.aspx?f=38&m=2105673

Try a search using the search box on the top right column. There is some info available.

Has he tried Remicade? Seems like a better option and approved.
Posted 12/12/2017 6:47 PM (GMT 0)
Interesting. My husband tried Remicade amongst the wealth of other treatments he’s tried through the years. He’s beginning to feel a bit like a. Lab rat. I hope he has a good response with Cimzialthough it’s a little disheartening to hear it’s in the same class as Remicade. I clearly have not done enough homework. I will remain hopeful but am fearful too. I will report back soon! 🤞🏻
Posted 12/12/2017 7:00 PM (GMT 0)
Other biologics to keep on your radar are Xeljanz and Stelara, which are biologics with different mechanisms of action than those medications you've already tried (not tnf-alpha blockers, and not madcam1 blockers like entyvio). Both are currently in clinical trials for UC, and available off-label.

Although Cimzia might have been off-label for UC as well.
Posted 12/12/2017 7:08 PM (GMT 0)
I have read (Minimually) about those. Thank you!! Poor guy is so desperate for some true relief that he’s willing to basically try anything. I never realized how UC and associated conditions could truly affect every facet of someone’s life. We are newlyweds (14 months) and it’s so hard to see him have to put aside things we both love to do like motorcycle trips, ATV riding, or simply avoiding eating anything at all to go on a long car ride or trip because of the pain and GI symptoms. There again, the loss of his father to colon cancer is always in the back of his mind.

Thank you for all your help and suggestions! I am anxious to do some more reading now!
Posted 12/12/2017 8:08 PM (GMT 0)
We've had a number of folks here go through j-pouch surgery, as well. A solution if the biologics aren't working for him (and for some of us nothing works). Those with a j-pouch have a great quality of life, eat well, and are free of the Urgency that plagues UC flares. They can put UC in the rear-view mirror and move on with their lives.
Posted 12/12/2017 8:40 PM (GMT 0)
Yup, as iPoop said, I had surgery and UC has been in the rear-view mirror since. I very rarely think about toilets or bathroom issues. If had children, I definitely think I would pursue a j-pouch. I would hate to be unable to do stuff with my kids. I don't have any, but I can imagine. I was sick and tired of missing out on my own life, but having it impact my family's life would have been the straw that broke the camels back for me. I do a tons of active stuff since my surgeries, bicycling, motorcycling, beach, day long fishing trips... the problem is, surgery won't necessarily give improvement to his joint issues. I had tons of joint problems on biologics, with pred, and even with a severe flare up, but if his are AI, they will stick around and require treatment. Mine were side effects of treatment & inflammation itself.
Posted 12/12/2017 9:12 PM (GMT 0)
My husband’s sister actually had the j-pouch procedure. She’s 10 years post-op. Unfortunately, hers hasn’t gone as smoothly as most. She’s only been without any complications for about 2 years. My husband is set on absolutely exhausting every possible treatment before he takes the surgical plunge. His mother, however, swears that her proctocolectomy was the best thing she ever did after battling Crohn’s, steroids, and continual hospitalizations for 20+ years.

Fortunately our 6 kiddos (3 each) are basically grown. Our baby is nearing 18. It does pose a challenge having to do so much traveling with the 3 in college. I know if it comes down to it he will do whatever necessary. I am currently trying to transition us into a completely plant-based diet. We are truly hoping that the right therapy and/or our diet will put him on the road to remission.

I’m hopeful and willing to look into anything that will make his life easier!
Posted 12/12/2017 9:40 PM (GMT 0)
Bigger kids is definitely easier! It makes sense to exhaust all the options. Why has his sister had so many complications? I am happy she's been doing well for 2 years, that's at least positive! The results of surgery are very varied. It seems risky, but for me it's been great. You just never know, and with his sister having so many issues, it would make me very nervous too. The ileo is much less prone to problems, but it comes with it's own issues. Hopefully cimzia works, if not, there are other medications that he could try. Lots of things coming along in the future too.
Posted 12/12/2017 9:49 PM (GMT 0)
The poor girl had all the worst. She had some general surgical side effects earlier on but through the years she has had everything from peritonitis due to a leak inside, to major issues with scar tissue, rectal leakage, continued urgency, diarrhea, numerous infections, and that’s just what I remember off the top of my head. Pretty much worst case scenario. Enough to scare the daylights out of my husband. For the past two years (thereabouts) she’s been without issues.

I will definitely remain hopeful!
Posted 12/12/2017 10:50 PM (GMT 0)
Scar tissue by itself can cause so many complications. Adhesions and scar tissue are definitely a huge battle for some. It's too bad there is no way to know if you will have a good outcome. I am thankful to hear she's had 2 years of good health. I hope she continues to do well forever. I hope your husband never has to consider surgery. smile
Posted 12/13/2017 5:28 PM (GMT 0)
I have tried Cimzia and it didn't really do much for me; it works with the same mechanism (anti-tnf) as Remicade, Humira and Simponi (all of which I failed).

If you failed 2 of the anti-tnf then it is probably time to move on to another type of biological. I currently take Stelara for my pouchitis and it is great.

If I had my j-pouch 10 years ago I'd probably of had more complications due to pouchitis but it is well controlled for me with the next generations of biologicals like Stelara. I like my j-pouch.
Posted 12/13/2017 8:02 PM (GMT 0)
ks1905, I'm just curious how you were able to get a prescription for Stelara with a UC diagnosis. I just asked my doctor yesterday about trying Stelara or Xeljanz and she said it's not legal for her to prescribe either since they are only approved for Crohn's. And since you failed 3 other biologics, you probably couldn't get it as a clinical trial, right? At least that's what I hear from my doc...
Posted 12/13/2017 9:54 PM (GMT 0)
It takes some additional work to get it. And I don't understand why it is illegal to write the script, the medication is FDA approved without any prescribing restrictions. Now the trick is to get your insurance company to agree to pay for it, they don't have to approve paying for the Stelara since it is not FDA approved for UC.

They call it prescribing it "off-label". My GI had to justify why I needed Stelara, it's a process. There is an automatic rejection from the insurance company, then he appeals it, they reject it again and then he does a conference call with their doctors and then he got it approved. I simplified it. Your insurance also has to have Stelara on the drug formulary or it makes it even tougher. I have very good insurance.
✚ New Topic ✚ Reply