My child has UC and leg pain

I am a mother of a 13 year old who was diagnosed with U. C. this time last year, when she was 12. She has been on Sulfasalazine and Prednizone.. now she has leg pain that has gotten her into the ER and to the ORTHO.... She can't walk on her left leg, the pain is from her bottom to her ankle, shifting places and even legs... I am at a complete loss of what to do. She's been depressed, Family Dr. put her on Zoloft. so she was on vitamins, sulfasalazine, Folic Acid and Sertraline... I have since these complaints of joint, leg and pain taken her off ALL meds. We are day free NO MEDS, and I had to break down and give her 2 tylenol Arthritis, they seemed to help but i still don't know why she is in such pain. is it the disease? its it the meds? I am about to pull my hair out. ER gave her loratab and sent her home. Family doc sent her to ortho, a very expensive one i might say and he,not the 400 dollar arm brase were of any help.... Now... I am considering going to a neurologist or just get some dr. to admit her in the hospital until they can FIND OUT wny my 13 year old is in such pain and can't walk on her right leg, at this time. These past 2 weeks have been hell. I won't put her back on Zoloft ( for her depression) simply because the 2 weeks she was on it her symptoms got worse.. stil, i don't know if it was the combo of meds... just the sufla or just Ulcerative Colitis. Do any of you know? Do any of you have leg pain or is this just my kid???

Wendy

(I added a subject)

Post Edited By Moderator (iPoop) : 4/2/2017 5:53:58 AM (GMT-6)

Not sure what her leg pain feels like. But I will tell you that while I was on Prednisone I was experiencing bad leg pain and muscle aching in both my legs. From my thighs on down. I had a heaviness and weakness that I felt after being on it for several weeks. Once I stopped Prednisone it took several weeks for my legs to start feeling better. My doctor also told me that Prednisone can affect the tendons in my legs Is her pain an achy pain or sharp type pain? Have you had an ultrasound done of her legs? She's very young to have circulation problems but you never know. How long was she on Prednisone ?


Is she still on any meds? Or is she completely off all meds?

Sorry to hear your daughter is suffering, UC is just awful and worse still when it's a child.

When i hear about leg pain, i often worry about blood clots which we're much more prone to as UC patients. Deep vein thrombosis (dvt) is the most common of those, effects the big blood vains in the legs, and is always worth testing for an eliminating as a possibility.

I don't hear of sulfasalazine causing pains, and sulfasalazine is actually used as a rheumatoid arthritis drug itself. Usually when i hear about drug caused pains it is usually biologics that are blamed (like humira or remicade). I understand eliminating her drugs temporarily but if you see no improvements within 48 hours, i strongly suggest putting her back on her medications. It's cleared from the body pretty fast once you stop it. As anything drug-induced doesn't take long to go away once the drug is stopped.

We can get various arthritis pains regardless of age (especially in the base if the spine and big joints within our bodies) . UC is immune-caused inflammation within the large intestine and arthritis is immune-caused inflammation within the joints. The CCFA has a good document on it www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

We can get another immune disorder like rheumatoid arthritis. Sometimes immune disorders come in 2's and 3's in about 20 percent of UC patients.

Did anyone like the ER do blood tests, what is her CRP and ESR, iron levels.
Arthritis is associated with UC.

Old Mike

Yes! Her pain sounds similar to what I experience. I had it for a year before most of the GI symptoms started. It's especially frustrating because it can be to the point where I cannot walk, but it can stop just as quickly as it comes on. The pain does move between my hips and radiates down my legs (not always on the same side). I went to ortho, rheumatology, the ER, physical therapy, and several visits to my primary care provider but no one could find anything wrong in MRIs or x-rays. The GI doctor thinks it's underlying inflammation. Prednisone offered relief but the pain returned once I tapered to a lower dose though it's been more infrequent. I also started doing yoga, drinking tumeric and ginger tea, using enemas, and taking mesasalamine pills every day, which I believe have helped. I'm hoping she can find some relief and please let us know if you find a solution.

Wendy,

I can certainly understand your frustration and helplessness, been there and still here for about 3 years now.
My daughter, who is now 10 1/2 , was diagnosed 3 years ago. A week after diagnosis, she started to complain about a foot pain, the next day she could not put any weight on it and I dropped her off at grandmother's (she was flaring badly at this time). When I've picked her up after work, both of her feet were swollen and she could walk at all. Next morning I've called her GI and took her there. I was told that it was arthritis as a side affect of UC. she was put on steroids (60 ml I believe) and referred us to a rheumatologist. Prednizone worked for her within 4 days. rheumatologist prescribed methotrexate and a bit later she was put on Remicade. Once her flare was under control, her feet pain went away and stayed away. We still see rheumatologist and of course GI, methotrexate was taken away last fall, concern about bad liver test, also, remicade failed and she is now on Entyvio.

Really hope that your daughter feels better soon, don't think there's anything worst than an ill child and feeling helpless.

It's either from the IBD or the meds

I developed severe joint/muscle pain, tingling and neuropathy 2 months into Balsalaside. I stopped taking it 72 hours ago as an experiment and the headaches, abdominal pain, muscle pain, neuropathy and join pain is pretty much gone. I feel like my life is way, way better off the meds. I don't do well with any of the other mesalamine meds but forced myself to take it to get into remission.