Severe joint pain; stopped remicade; so sad

Thanks Guardian! I think I can manage all of that... just have to get the bones and make some time. So far I haven't noticed anything different being on the magnesium but I have a huge bottle now so I'll keep at it. I'd assume it could take a while anyways.

Hi Thoreau, I’m really very sorry you aren’t getting the improvement we had hoped for from the Prednisone. One interpretation is that your condition isn’t inflammatory in nature. OR it could be inflammatory but you’d need a far great dose of an anti-inflam medication to address it. Anyway, it sounds like you’ll wait it out and do some further diagnostic work once the pred out of the your system.

So, a tapering schedule at this point: 5 mg at a time sounds reasonable. Adrenals kick in around 8mg, I believe (although there’s some individual variation). The key, as you probably know, is that you need to give them a chance to get back in gear to do their job. I personally go very slowly at that point, once I reach 8mg, tapering 1 or 2 mg every 5 to 7 days. I’ve always done that under 8mg, and I have had zero side effects at the end of a taper. It’s hard because I’m always in a hurry to be done with it and get it out of my system. *I know there are different schools of thought on this. I’d characterize mine as conservative…)

Very interested to hear what you decide to do and how it goes. Sending support to you across the miles.

Hi Burli- those lesions are a documented adverse reaction to remicade. You can google it. Haven't read about skin cancer but it's plausible.
It was indeed difficult to give up on remicade! I only did because side effects were intolerable. It did a great job healing the worst UC flare I ever had or imagined possible.
I don't know if lengthening the interval between infusions would get below therapeutic levels.
Or it could open the door wider for antibodies to develop. Are you taking something to decrease the likelihood - like 6mp or methotrexate? Or did you decide not to due to the combo increasing possible cancer risk?
So sorry to hear of your conditions. That's a lot to manage! Wishing you well...

Well...
-I'm tapering pred now, by 5-10 mg per week. Gotta get off of it. Not helping anymore.
-Going to try acupuncture for pain relief while I see what the heck else to do.
-Will pursue more testing/diagnostics once off pred.

Thoreah - I am so sorry for all you are going through. I stumbled across this post looking for any cases of DILE from Lialda - which I have just been diagnosed with and felt compelled to send you a message. Apologies if you already answered this but have you been tested for anti-histone? A negative ANA does NOT preclude a diagnosis of DILE. Your symptoms sound very familiar to what I experienced, excruciating pain from simple activities like writing, sitting in one position, chopping vegetables, or no correlation to any activity and little to no relief from pain meds. I was diagnosed much sooner than you and I will say it takes a bit of tweaking to get the pred dosage correct before you begin tapering. I stopped the Lialda on Dec 23rd, tapering down pred and the "episodes" of the DILE are not as severe or frequent. BTW, GI with 20+ years experience had never had a case of DILE and there is very little information on any reports of DILE from Lialda, the only thing I could find was a "lupus like syndrome" reported post clinical trials.

Question for anyone else - any recommendations on other medications for the UC? I am new to UC, diagnosed Nov 2013, in remission with Lialda until Dec 23, 2014 when I stopped taking it due to the DILE - just started Uceris 8 days ago (not helping) and GI is looking into injectibles but with the DILE I am afraid to try anything else.

Low residue, little to no fiber, no artificial sweeteners, avoid fatty / fried foods, no raw fruit or vegetables, no soy. It took 10 years to get a correct diagnosis, during that time, by trial and error I have weeded out the worst offenders for kicking off the D, B and M.

Uceris didn't help me at all when I was flaring.
It took me a long time to get to the biologics, and remicade seemed like the best bet for me. It definitely was until it triggered lupus. I know the intensity of those pains! Took them a few months to diagnose it.
For you, it would be worth knowing more about the mechanism of action in Lialda, so you avoid other UC medications that are similar. I'm steering clear of all anti-TNFs for example.
I hope you feel better soon.

Whoa, I must have missed all these updates over the past week. My apologies!

Mrs. Brady -- I don't think I've been tested for anti-histone, unless I am not remembering correctly. I just had them run the ANA tests that I thought give you a sign if you might have DIL. I've been at a loss as to what to do, so I've tried to recommend things I've learned here as additional thoughts to my physicians. Thank you for that information. -- In regards to the prednisone, it worked amazingly at 40 mg for a few days, but then the pains crept in a bit, and every taper down they came back more. Right now I'm back to majorly suffering if I'm not on pain meds, and even if I am the pains still work through some.

Also, in regards to medicines for UC... I'd recommend immunomodulators if your disease warrants them and the 5-asa's are a not go. But, they do have their own side-effects. My GI says he gets more reported side-effects from them than biologics, though I personally would worry much less about the immunomodulator. Maybe that's because I was on 6mp for years.

I'm signed up for acupuncture next. Should be off of prednisone next week unless there are complications with the taper. So far I'm doing decent... not exemplary, but decent. Haha. Then, in April or May I'll have more testing done. Then if no answers, consult with Mayo will likely be in the cards.

Thoreau and Contentprof - Thanks for the information. It helps to know that others are going through the same types of issues and that this group exists to help one another out. I figured ASAs were out of the question as an option as there are reports of DILE. I am not familiar with the other meds so the information you gave on immunomodulators at least gives me something to research. As Contentprof recommended in an earlier post you should keep track of your symptoms. It was extremely helpful to the Rheumy to review the symptoms against the pred dose and then tweak it. I bounced around with different doses over a period of time before we got it right, though, I still did have these "episodes" but they started getting less intense. Happy to say I am tapering at 2.5 mg every other day and haven't had any joint pains for 10 days - longest period yet! Although, the UC is now flaring but I'd take that over those DILE pains any day. I also keep a "PJ" (poop journal) as I affectionately call it so when I see the GI I have concrete information about my symptoms, frequency, etc. Hope you feel better soon!

Happyday, glad to assist in any way possible. It's a long story so bear with me.

I was diagnosed with UC in November, 2013 and started Lialda, 2 pills 1X daily which worked great. In March I noticed these pains, they started subtly - I sat with my legs crossed for about 2 hours and the next day my knee was extremely stiff and it hurt to walk, within 2 days the pain was gone. A few weeks later I noticed that after cleaning the house my ankle was stiff and sore. These episodes happened on and off for a few months so I didn't think too much about it. In June I was having some UC symptoms so my Lialda dosage was increased to 3 pills. Within a couple weeks the pains were more intense, more frequent and would jump around. I mentioned it to my GI and inquired if it could be from the meds and he had never heard of joint pains from the meds and recommended I follow up with the GP. I was thinking maybe it was arthritis so I let it go a few more months until the frequency and intensity of these episodes got to the point where some days I had difficulty walking, opening doors, etc. and I was having difficulty sleeping so I finally saw the GP in October. Because I have UC and Hoshimotos she thought it might be Rheumatoid Arthritis or Osteoarthritis. So the testing began. I had several blood tests, ANA positive 1:128, homogenous pattern (which didn't mean that much as the Hoshimotos can cause that to be positive); ESR normal; Rheumatoid Factor Negative; x-rays of hands and wrists to rule out joint destruction. There were some other tests that were run but they didn't indicate anything. The pains were getting worse and spreading - ankles, feet, knees, neck but the worst was in both wrists and hands. I couldn't pinpoint what I was doing to cause the pain. If I wrote more than a short grocery list my hands would hurt so bad that I couldn't move them. Sometimes my fingers would swell, other times they didn't. The GP at first dismissed me when she gave me the results but I pushed her on the issue. Clearly there was something wrong and if she couldn't help me then I needed to find somebody that could. Without actually looking at the x-rays, just reading the report, she gave me the name of an orthopedic surgeon. Thank goodness because the Ortho was awesome, within 15 minutes she reviewed my x-rays, checked my hands and said she couldn't help because there was nothing wrong with my bones but rather soft tissue related and based on my description of the pain she thought it was auto immune related and sounded like lupus. I found a great rheumatologist and he ran a battery of tests. While he was working on the diagnosis the pain was getting worse so he prescribed Pred, the first script was for the 7 day pack, start with 7 pills, then 6 and so on. For the first time in months I was pain free and then within 2 days the pains returned. So we worked together to tweak the dose based on how I was feeling. The Rheumy did some research and found a reference to "lupus like syndrome" with Lialda so we discussed in great detail during that visit when the pains started and when I started the Lialda he started thinking it could be DILE. He then ran the anti-histone which came back positive and that's when he thought that it quite possibly could be DILE. At that point, he consulted with my GI and I stopped the Lialda on December 23rd. With the pred and not taking the Lialda the symptoms gradually decreased in severity. The anti-histone was ran again in early Feb and the levels had dropped. I am currently tapering off the pred and have felt great for 10 days - the longest period without pain in months.

So, after that long winded story, I am in the same boat. My UC is flaring, I am taking Uceris (only after thoroughly researching the side effects) which hasn't helped yet and I am scared to death to take anything. I told the GI if there is ANY chance a medication can cause DILE I am NOT taking it. How is your pain now? Did it subside once you stopped the meds? I was doing some research on Humira and there are reports of DILE. The Lialda (mesalmine) seems to have fewer reported cases of DILE. The good news, at least for me, is that upon stopping the Lialda the pains started subsiding within a few weeks and within 2 months I feel much better. I think the one thing to bear in mind is that we need to push the doctor(s) for answers, which I do now after my UC was misdiagnosed for 10 years. If your GI is being dismissive about your symptoms follow up with your GP and keep pushing them for answers.

Let me know if you need or want any additional information.

Well, tomorrow I will try dropping to 5 mg of prednisone and see how I do. Obviously it seems like what you all went through was somehow manageable. Whatever I have going on is relentlessly causing me pain. I've been hurting very badly at times every day; until I get the right mix of medicines and/or heat, rest, etc...

I'm a little scared that I'm infected with some sort of mystery virus, and that nobody is looking for it. My GP will help with that when the time comes I think, I just wonder... I've been to infectious disease multiple times and everything he could think of was ruled out.

The hardest part of all of this is that it affects me every day significantly right now, but I have to just be patient. Not until I'm off of prednisone for a bit can we start testing again, and then look for answers at Mayo if nothing else.

I've read about fibromyalgia, and what I have going on does not seem similar enough to call it that.

I know cutting pred down to 5 mg and then off is faster than you're recommending Content, but I'm getting to be a mess on pred. I'm up somewhere around 12-15 pounds... it's kind of gross to me since I'm not used to having the extra weight. My skin is oily, I have acne... and lately I'm getting sick to my stomach, bad sometimes... with this sick/almost nauseated feeling.

I don't really know what else to do but finish pred, run some tests with my GP after a bit, then go to Mayo and see if they can get serious about this. I've tried like heck to figure out other possibilities online, but I just don't have the medical education to pinpoint it.

I'd bet this post seems fairly depressing. I'm not overhwhelmingly down due to pred or anything; just hurting fairly bad and been feeling sick. Ready to at least get back to my pre-pred state.

Dear T, this is a real drag. Not only your pains, but more. I'm sorry you are so uncomfortable. I do worry that tapering the Pred so fast is making you feel even worse though, and you'll be vulnerable if your adrenals haven't had time to kick in & get going again. I know you are impatient to be done with it so you can get it out of your system. But under 8mg, I think you need to be careful since you've been on pred for a long stretch. (Please read about what can happen if you taper too fast.)

As for what's going on at the root of this, I've been searching for you reading widely. It seems that the persistence of these pains despite Pred says it's not an inflammatory condition. Or it may be, but you needed a way higher dose of an anti-inflammatory drug. It does seem like ratcheting up the medical expertise would be helpful, and Mayo is known for diagnosing complex multi factorial conditions. So it may be time to go see the ATeam. I feel so badly knowing you are suffering. I know there's an answer for you out there - just haven't found it yet. May be infectious & neuro- muscular complications.

Sending lots of support & I'll keep reading for you. Please continue to update.