Severe Muscle/Joint Pain??

Hi guys,

I have Left-Sided colitis. I was initially diagnosed at 18 with proctosigmoiditis, but my first GI didn’t seem too concerned...I was on Lialda, but the disease progressed anyway. I also had concerning elevated liver enzymes from the Lialda and so cannot take it anymore.

My new doctor has put me on Entyvio. I’ve been on it since November 2017. I tend to have short periods of remission (a few months at most) before all of the symptoms come back for no apparent reason. It seems like a cycle, and I’m a bit worried because my doctor wants to give me another colonoscopy (which i’d like to avoid if at all possible.) I don’t want to take any other meds on top of the Entyvio. I found rectal Cansa to be somewhat helpful, but it didn’t completely heal anything and I had a horrible reaction to a steroid enema I was on for a while, so I’d love to avoid that as well. I will not take oral steroids for longer than a few weeks. I don’t think the long term side effects are worth it, and as soon as I taper of the steroids, the symptoms come back anyway. I seem to feel better when I eat less. I’ve tried cutting out different food groups, but outside of the obvious no-nos (nuts, granola, popcorn, stuff like that) there doesn’t seem to be any specific food that causes problems...instead it is more like my body just wants me to eat LESS, which I need to try harder to do... it’s just hard because I lose weight so easily and really enjoy food.

Anyway, this is all just background/preface to my main problem/question. about a year after being diagnosed, I developed peripheral arthritis. It affects multiple joints and moves quickly from one to another. I was on Humira for a year (and that is when I developed the arthritis, but I’m still not sure if there is a connection to the med or if it was coincidental.) It’s been a few years now (5 years since I was originally diagnosed) and the arthritis continues, even when my UC symptoms are better. I also developed large, bruise-like knots on my legs that appear when I do a lot of walking, dancing, standing, etc. My doctor says they are probably EN, BUT sometimes they look like bruises and sometimes all I can feel are muscle knots under the skin. It hurts just as bad as the arthritis, but instead of affecting a specific joint, it will affect an entire leg or muscle group. Sometimes it swells and turns red like an infection. It always gets better after about 24 hours of continual rest.

The problem is that I’m a grad student. I work at a college during the school year, but I have to do retail during the summer. I work 8 hour shifts and the pain is excruciating. I’m afraid I’ll lose my job, but my doctor has no idea what is going on really or how to treat it. He says treating the UC will fix all of the other problems, but it almost seems entirely unconnected. And even if it isn’t unconnected...I’ve tried so many different types of meds that haven’t really helped., I think the Entyvio still needs more time to work fully, but if anyone has an ideas on what’s going on with my legs, please share them with me! I’m also open to medication/diet suggestions—as long as the suggestion doesn’t involve long courses of oral steroids or steroid enemas of any sort.

Please help!!

I'm a strong proponent for hitting UC hard with many medications simultaneously, beat it into submission
and find a sustained remission for 6+ months, and then (and only then) whittle it down to just the med you need. I found a remission by being on all of the following meds simultaneously: Remicade, 6MP, Lialda, Rowasa enema, and pred.

I hear you that you don't want to be on a lot of meds (believe me nobody does), nice thought and aspiration to have. However, your UC is clearly severe and your UC is really calling all of the shots here (not your personal philosophy), and it should drive what is necessary to achieve a good quality of life and a remission. Once in a remission, take only what's necessary. Now, hit UC with a one-two-knockout punch and move on with your life with a good quality of life. The longer you kick the can down the road and make only little changes, you allow your UC to simmer, spread in extent, and get more severe.

I get it pred sucks and has long lasting issues (it isn't known colloquially as the devil's tic-tacs for nothing), you need to be on it at least 2-months without symptoms to shut-off the immune attack mode, and win against this thing. Being on pred for only a couple weeks due to fear is hurting your chances of success, you're wasting your time being on pred for 2-weeks.

For a severe case, diets and supplements are but a sparrow's fart against an oncoming hurricane: kicking the can down the road and letting while your enemy (your UC) advances, reinforces, and gains an upper edge on you.

The inflammatory process is body-wide with collateral damage elsewhere, getting your UC under control can help your other inflammatory issues: arthritis. You can take sulfasalazine instead of lialda. As Sulfasalazine is also prescribed for Rheumatoid Arthritis, in addition to an UC and can be a two-for-one win.

I just posted about something similar.. for me it's severe leg pain, muscle weakness and heavy legs at times. I am in the process of being diagnosed.. take Tylenol when it is REALLY bad ( thankfully not since Easter) otherwise I'm taking hot baths a couple times a day...

I'm new and taking notes! Hope you get some relief soon!

iPoop - thanks for sharing the link to the article.

I have had pretty severe joint pain when my UC flares, and also a lot of lower back pain. Sometimes my back will start hurting before I have UC symptoms show up. I don't tend to have as much joint pain when I am in remission, but it seems that there is still some - I just don't know if it's UC related or just because I'm 55 and maybe I'm reaching an age where things might start hurting. Lol! For the last few years I have also had some respiratory issues that my pulmonologist believes is linked to having an autoimmune disease. This all sucks, but my UC has been in remission for two years, and I am thankful for that.

Honestly, when I went into my first flare, my joint pain as so bad that I could barely get in and out of bed, no less even MOVE AROUND in bed. It was awful. Joint pain and inflammation is very common with UC, especially if you're flaring.

My joint pain was the first sign of my UC. Rheumatologists were baffled, neurologists were baffled. Then once I began seeing blood in the toilet, the first thing I said to my doctor is "I have Ulcerative Colitis, don't I?" - He told me that my joint inflammation wasn't consistent with UC patients, that my joints would be red/swollen, etc. They weren't.

But I went to a GI doctor a few months later (couldn't even see a Rheumatologist, as they were all booked up for MONTHS) - She scheduled a scope. Once I woke up from it, I was being admitted to the ER for severe blood loss/anemia/dehydration, etc. For...Severe ulcerative pancolitis.

As my flare began to calm, so did my joints, luckily.

Compression gloves/socks REALLY help. It was the worst in my hands and knees.