Pain and lose of feeling................

Hi fignewton, I'm sorry your going through this. I would definitely seek out at least a second opinion. I was having issues on humira some of which were muscle pains and some joint pain among other things and my GI stopped the drug just to be safe. The Rheumatologist wanted me to start methotrexate as well but agreed to let me wait until more tests are done. Personally I would say to see if you can get more answers before jumping on new meds but that's just my opinion. What tests have you had so far?

what type of pain is it? Aching and sore only? Any shooting pain or tingling? Does it get better when you move around? My RA is sending me to a neurologist to test for neuropathy and other nerve related issues because I have had shooting pain and tingling that's more related to nerve issues. She sent me for a nerve conduction test which is one of several tests that can be done to check for nerve damage. Mine came back fine but I was told that it has its limits on what it can pick up and there are other tests so definitely se a Neuro if you have any concern about neuropathy. With the fact that it's in your joints it does sound more like arthritis but they should really do ultrasounds of your joints to see if it's rheumatoid arthritis which would warrant a more proactive approach with methotrexate. Entyvio I would think should help joint issues so I don't think you should rule out it being a side effect or reaction to the med. has entyvio helped your crohns?

I recently quit entyvio. I had no relief at all from it. In fact, my toes started going numb as soon as I started it. I would start to regain feeling in my toes and it would be time for the next IV. My last IV was in 7/2015 and since then I have slowly regained some feeling in my toes. I have always had joint and muscle issues since I have been sick. IT moves around a lot and my RA says it is crohn's related and once we find s drug that works it will calm down. Remicade helped a lot for all of my secondary issues, but not my colon.

So, you are not going crazy and you are not alone. Try to rest and hot baths help.

Have you been on prednisone lately? I have been getting crazy joint pain after weaning off pred the last couple of times I was on it - enough that I went to an arthritis doctor and was also told it was Crohn's related. It went away after a few months, but at one point it was so bad that I literally had trouble getting off the floor (I work with young children) and I am only 31 and thin. I don't know much about Entyvio, but I do know that I had serum sickness from Remicade and that was AWFUL joint pain that pretty much immobilized me until I went to my arthritis doctor for a steroid drip.

Wow, three at once! Please get multiple opinions! I have had the same issues with doctors being dismissive when they really just don't have the answers. personally that was what my Rheumatologist wanted do but since being off humira my symptoms have improved. it has taken over a month and they are still not totally gone so though I can't say for sure that it was medication it has oddly gotten better since being off of it. Had I taken methotrexate who knows whether I would have developed more side effects. It gets so confusing when your on multiple meds to figure out what is causing what but when you are on something that could have these symptoms as side effects I feel that it needs to be fully investigated before adding something that has its own list of side effects

I had my GI paged, and he called me back. I told him the skinny and he was like woooooo. He first said that methotrexate is harsh on the liver and that my liver test weren't that great so he really didn't wont me on that. We were talking about stopping 6MP and just taking the methotrexate instead but he didn't feel that it helps with crohns related issues. We talked for a while and he said the best thing is to hold off taking methotrexate for now, and to go see another RA Dr. and see what they say. He did mention that some old school GI dr.s have prescribed methotrexate but he feels that its not proven method for either of my symptoms. I already placed the call into the 2 Dr's he recommended, one doesn't take my insurance and the other still waiting for a call back to see if they take my insurance first and then to make an appointment. Not much experience with RA dr's but boy they are sure hard to find that take my insurance and appointment. So for right now no methotrexate............................. Dealing with it for now..........

Hi everyone,
I haven't been on here for a long time but I thought I would add my thoughts. I've pretty much tried everything except Remicade. I didn't feel like I wanted a mouse antibody in me so I chose Humira instead. Was taken off it after exhibiting neuropathy. Prednisone works but one can't stay on that. I took a trial Vaccine called Quebeco that really worked well and with no side effects at all. The trial ended, so was put on Entyvio. Have been on it for about 1+1/2 years. Had a bowel resection in May and caught Pnemonia and suffered from C. Diff for over 3 months. Had Vancomycin for it but whilst undiagnosed for 3 months I was using various brands of Kefir to "fix" what I thought was a really messed up bowel after having 4 different antibiotics whilst having surgery to remove scar tissue from a prior surgery in 1996. Not once did the hospital ask me if I wanted any yogurt or Kefir to help replace the killed off gut bacteria. They're not doing their patients any good with that neglectful practise. Then they tested me for C. Diff in the hospital and said "I didn't have it". My GI specialist said I could've got it after leaving the hospital. I didn't believe him and although I had the test kit and had filled it up at home I couldn't get to the lab to submit it. After 3 months living by the toilet seat a friend came over and took the bull by the horns and sent in my do do sample which came back as positive for C. Diff! So I wasted all of last summer having to sit by a toilet seat. I'm sure I caught it while in hospital for my bowel was in a total dysfunctional state right after surgery.
Now I'm over all of that I've got increasing pain in my joints. It started with various fingers and was moving around between them and now it's in my thumb and my right knee. I've never been an arthritis sufferers till now!!
I complained to my Gastro and he said that "Entyvio is not known to cause that" and now he's asked my regular GP to send me to a Rheumatologist! I think now after doing a search online that my Gastro is just LYING to me!
I'm getting more angry by the day as I have to admit that my Specialist is NOT helping me but helping HIMSELF instead! I do think that there is a very real conflict of interest going on here by which even if the Specialist (who is a Drug Trial Doc) knew what to give me that would cure me he won't do it because keeping patients sick guarantees an income for himself. I say this because a Nurse that was looking after me whilst I was taking the Quebeco Trial Vaccine admitted that "if it worked then she would be out of a job!" I told her that "with her training and skills as a Nurse she would NEVER be out of a job!"
So with the underlying current of "people's own self interests" coming into play I am really JADED now and since I'm the idiot who's going along with this stupid scheme I am just outright going to QUIT!!! I will stop the stupid Entyvio treatment and get a friend's do do and just stuck it up inside myself.
Why keep the self serving dysfunctional health care system going when it only serves those who are getting paid from it? I am SO FED UP WITH IT!!!!
26 Years of this stupid Crohn's illness is far MORE than enough for me! If you can not understand how I feel then living the life yourself you would certainly then understand. If the Fecal transplants don't work then I'll chose Assisted Suicide instead! I don't care and am not going to keep living this downright stupidity.
I am quite sure that there is definitely an easy simple cure to this condition but when we don't demand it it's just NEVER going to happen!!! And just like those sufferers in the UK say - " I DONT WANT my condition managed I want it CURED!"