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Crohn's Disease Forum » Treatment » Entyvio/Vedolizumab » Any one have luck treating joint issues with entyvio?


02-09-2015, 07:10 PM   #1
lamor32twigs
 
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Any one have luck treating joint issues with entyvio?

I have had crohns for approx 25 years and have tried and failed almost every TNF out there....remicade, cimzia, humira, currently on simponi for the last 3 years.
Have had one small and large bowel resection and multiple fistulas.

My big issue currently is arthritis. About 5 months ago my right index finger blew up to the size of a sausage in the matter of days. A month later I ended up having surgery to drain some fluid and scrape the tendon. Stayed on simponi and switched from imuran to Methotrexate.
Fast forward 3 months and my finger remains the size of a sausage. Two weeks ago I had repeat and much more extensive surgery because the tendon was inflammed down the entire palm of my hand now. Currently my finger remains swelled and virtually unusable.

Saw both my GI doc and Rheumatologist this week. They are in discussion to try entyvio. I am hesitant about this because it seems like such a "gut targeted" drug that it won't help my arthritis.
The only other potential treatment back in play is remicade. I had severe reactions to it and we discussed trying to get desensitized to it....which is a whole new topic!

Any one have luck treating joint issues with entyvio?
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Currently on off label trial of simponi, prednisone and methotrexate
Diagnosed 1988
crohns of large, small intestine, rectum. Severe oral crohns.
arthritis and uveitis.
Bowel resection 1995
failed remicade, humira, cimzia, cellcept, methotrexate, flagyl
02-09-2015, 09:08 PM   #2
abudman
 
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i have bad joint pain with entyvio it is a side effect
02-10-2015, 11:49 AM   #3
mamabird
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Hi! After my second infusion of Entyvio, my right index, middle and ring finger joints are swollen. They hurt more in the morning definitely, but I use my hands so much that they really hurt most of the day. After my 3rd infusion last week, same issue with same fingers. MD doesn't seem too concerned but I woory about permanent damage. Hope you find help and I had horrible reactions to remicade, Humira and cimzia too. I am a year out from 3rd bowel resection. 25 years with this ugly disease, but my kids and husband keep me going! Best to you!
02-11-2015, 08:42 PM   #4
lamor32twigs
 
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Mama bird..thanks for your reply. So it sounds like your swelling and joint issues are worse now on the entyvio. How discouraging.
Thanks again for your reply...hope you are feeling better soon
02-11-2015, 10:25 PM   #5
mamabird
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Hi lamor! Unfortunately yes, but my alternative is an ostomy bag being as I only have 9 feet of small bowel remaining! I want to exhaust all medical options first. It just sucks because I am a hospital pharmacist and use my swollen hands to make IV medications! Best to you
02-12-2015, 08:32 AM   #6
lamor32twigs
 
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mama bird...I understand completely. I am an oncology nurse working at a private practice so I need my hands to start IV's, access portacaths and help mix meds. Whenever I have to go under the hood to mix something I cringe! I feel for you.
02-13-2015, 10:16 AM   #7
mamabird
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So nice to not feel alone lamor! It's so cold here in NJ which isn't helping! Hoping you feel well today and hope this Entyvio is the answer!
02-17-2015, 11:40 PM   #8
sydnee11
 
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After being on vedo for over 5 yrs I do not recommend it solely for joints. My gut issues are pretty much gone besides rare bad days from constipation/and going all at one time. Sorry tmi. But my joints have gotten worse. It does stand to reason though, my joints never followed a disease related pattern. Meaning, if crohns improved that didn't mean my joints got better. And sometimes they would get worse. Humira didn't touch the pain either. Only drug that ever worked for joints was Celebrex and well crohns patients can't take it
03-12-2015, 11:01 AM   #9
Memmy29
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I'm similar to mamabird in that I have very bad pain in the hands and feet (listed as a side effect of Vedo). I had major joint issues prior to Entyvio, but not like this. I used to have arthritis in my knees and elbows ONLY. Post Entyvio, it's just my hands and feet and it is brutal. I am taking 10 mg of prednisone and it's barely enough to get me to work. The doctor cannot tell me if it is caused by Entyvio or if it's my own joints that aren't under control. Beyond frustrating.
03-12-2015, 11:19 AM   #10
mamabird
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I feel your frustration! My hands are starting to get numb now and then too! And I already had carpel tunnel surgery 11 years ago. Hoping for this to subside for all of us. The only thing keeping me going is that my BM are getting better.
10-25-2016, 09:03 AM   #11
cornfieldgirl
 
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I know this is an old thread but I found it because of the severe pain I have been in with regards to my arthritis. I have been on Entyvio for almost two years now. In the past 4 months, it was moved up to every 4 weeks. The pain in my feet and hands/wrists has been excruciating. However, I am in remission and my gut is in great shape.

Has anyone found anything that works for the joint pain?
10-25-2016, 09:21 AM   #12
Memmy29
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The Entyvio is working great for my Crohn's. I finally got healthy enough to get pregnant, received it throughout pregnancy and breastfeeding too. My son just turned one and I breastfed successfully until 12 months. The joint pain is horrible. I've had to take 10 mg of prednisone everyday since I started Entyvio. It's mainly in the hands and feet like you say. I got so sick of the steroids I went to my Rheumatologist. She said either I go on methotrexate (a no-go for me since I'd like to have another child soon-sh) or I try a dairy-free gluten free- diet. I have to say I've resisted it for months now, but I started the diet 3 days ago. My joints are about 75% better. I'm planning to wean from the prednisone next week. Fingers crossed this diet is the key. I'll let you know in a few weeks. Good luck.
10-25-2016, 05:33 PM   #13
cornfieldgirl
 
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Memmy29, thank you for your reply. How wonderful that you were able to achieve remission and have a beautiful boy. Thank you for sharing your experience with me.

I saw the rheumy today and she suggested methotrexate. I can no longer take prednisone because the last round caused diabetes which is now permanent and I am at a high risk for losing my vision. I am in so much pain that I decided to give it a try. She did not suggest a diet and I am interested in how this works for you. My diet is pretty restricted as it is but not with dairy. Maybe it is something to consider.

It is weird that this is affecting the hands and feet.

thank you again. I appreciate it.
12-04-2016, 12:08 AM   #14
wingtnut
 
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I had my 3rd loading dose about 2 1/2 weeks ago and about 3 days later could barely walk. My wrists, hands, ankles and feet were so painful even when sitting. Believe it or not my doc put me on sulfasalazine and it actually took the edge off while being idle. However, still quite a bit of pain when walking or using my hands. It's been 2 weeks and slowly there is a little improvement. I did develop a neuropathy in my feet that would get worse towards the end of the day...kind of like burning feet syndrome. This was as bad as the joint pain but was prescribed Neuroton and that seems to be helping. Good luck and I hope you are pain free soon
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