Could horible pain in knees and hips while on prednisone or imuran be fibromyalgia?

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calvin1242
New Member


Date Joined Dec 2016
Total Posts : 19
   Posted 12/20/2016 10:37 AM (GMT -6)   
I have a huge problem that's kept me from being able to work for a year. I'm afraid I'm about to lose everything. I'm from the colitis forum cause I have proctitis. I've been treated with prednisone and imuran but both drugs cause horrible pain in my knees and hips that makes it hard to walk. Sometimes the muscles in my legs get so tight and they won't relax. I've tried humira and remicade but both drugs give me anxiety, insomnia, and panic attacks but when I'm not on them I'm fine. Hydrocodone does nothing for the pain but if I take xanax the pain almost completely goes away. My dr checked for pressure points for fibromyalgia but I didn't feel any pain when he checked but thinks I have myalgia type tendencies. Does this sound like I have fibromyalgia? I appreciate anything you could tell me.

Alice22
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Date Joined Jul 2015
Total Posts : 595
   Posted 12/20/2016 11:38 PM (GMT -6)   
Hi Calvin,

I also have ulcerative colitis (and RA) and take a low dose of Imuran and have been on prednisone, but not recently. And I also have similar symptoms as you - pain in knees and hip, and muscle pain in my arms that just started within the last year. I was told a few years ago that I have fibromyalgia, but that was before the muscle pain started. If you think the Imuran and prednisone are causing the pain in your knees and hips and that proves to be true then maybe you don't have fibromyalgia. Can you get off those drugs and use something else? It seems like that's the only way to know for sure if they are in fact responsible for your symptoms. But if your pain is caused by fibromyalgia and not the drugs, Cymbalta, an antidepressant, is supposed to help with the pain according to my doctor. Are you sure that remicade is causing your anxiety? Is that one of the side effects? I use remicade and haven't noticed that, but that doesn't mean anything really as we all react differently to meds. Have you seen a rheumatologist?
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Caregiver for mother with Alzheimer's Disease (for Alz. forum)

calvin1242
New Member


Date Joined Dec 2016
Total Posts : 19
   Posted 12/22/2016 10:17 AM (GMT -6)   
Thanks for the reply. It's nice to know someone else has had the same symptoms. I did stop taking the prednisone and switched to imuran which I'm currently on and my legs got a little better not much though im still unable to work. I did stop the imuran once and my legs felt great but my proctitis flared and my back hurt really bad. It's almost like an arthralgia that moves around the body. When I'm on imuran my back feels better and the proctitis is controlled but my legs hurt. When I stop the imuran my proctitis flares and my back is in a lot of pain. It just gets transferred around. On the two biologics I've tried humira and remicade I get insomnia, anxiety, and panic attacks. On humira it was real bad. On remicade I only did one infusion and it lasted about a week but I got scared and cancelled the next infusion because I had the same feelings on humira and didn't wanna go through that again cause it was horrific. Yeah, I have a rhumatologist and he said he's never had anyone say they had anxiety and insomnia from biologics so... what do u do.
37 years old in Hewitt TX
Diagnosed with proctitis August 2013
Current meds- lialda 3 a day, 100mg imuran, canasa 1 nightly Multivitamin .
Past meds- prednisone, humira, remicade, apriso, pentasa, delzicol, turmeric, vitamin d3, fish oil, ambien, folic acid, nicotene gum, boswellia.

CA-Lynn
Regular Member


Date Joined Jul 2016
Total Posts : 24
   Posted 12/22/2016 2:43 PM (GMT -6)   
Those symptoms are more likely related to the Pred than to the DMARDS.

If Xanax resolves the symptoms.....I'd have to wonder if your real issue is anxiety over the RA or other issues.

I was diagnosed 20+ years ago and have been on many forums.....and have never heard of others complain that biologics create the problems you described. I myself have been on MTX for 20+ years and Humira for 6 years.

Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 595
   Posted 12/22/2016 11:04 PM (GMT -6)   
Calvin,

I can understand your hesitancy to try remicade again since you had such a bad experience with humira, and your first infusion of remicade caused anxiety as well. I totally understand. BUT if your symptoms are so severe that you are unable to work, I think you owe it to yourself to either try remicade again, maybe along with an anti-anxiety med, or something else and try getting off the Imuran. After reading your post and learning that Imuran can cause muscle pain (which I didn't know) I actually decided to stop taking it. If my muscle pain doesn't go away then maybe Imuran isn't the cause, but stopping it is the only way to find out. I would do the same if I were you (sorry, I know I'm being repetitive). I've been on remicade for over 10 years and I did notice a while back that my heart seemed to race a little when I was getting the infusion, but then it stopped. I don't know if I was just nervous or it was the result of the medicine, but I know that without the remicade I'd be in very bad shape so I stuck with it. No one takes these powerful drugs lightly, but we need them because we have serious diseases. Is your back pain related to your proctitis? In other words, if your proctitis is controlled do you still have back pain? If that's the case then you only need one med for the proctitis. Talk to your GI doctor to find out what your alternatives are. Maybe there is something other then remicade that you can replace the Imuran with, but if not, I'd ask for an anti-anxiety med and get back on the remicade.
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Caregiver for mother with Alzheimer's Disease (for Alz. forum)

calvin1242
New Member


Date Joined Dec 2016
Total Posts : 19
   Posted 12/23/2016 7:20 PM (GMT -6)   
I know you're right I've been trying to make the decision to try remicade again for the past 5 days. I've been waking up in the middle of night stressing about it but so far that's the only thing that has taken away the pain from every part of my body and I need to do something. The only thing is I didn't just get anxiety I also got the deepest depression, and insomnia. Just from that one infusion although it did only last about a week and then went away, after that I felt ok. I'm just terrified that it could intensify the more I do it. That's pretty much what happened when i was on humira. As for the imuran and muscle pain prednisone caused the same pain in the same places knees and hips so I wouldn't say it's the imuran but my immune system doing weird stuff. I am curious to see if your leg pain goes away from stopping the imuran though, definitely let me know. Thanks!
37 years old in Hewitt TX
Diagnosed with proctitis August 2013
Current meds- lialda 3 a day, 100mg imuran, canasa 1 nightly Multivitamin .
Past meds- prednisone, humira, remicade, apriso, pentasa, delzicol, turmeric, vitamin d3, fish oil, ambien, folic acid, nicotene gum, boswellia.

Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 595
   Posted 12/23/2016 8:22 PM (GMT -6)   
Ok, will report back on whether or not muscle pain goes away now that I'm off the Imuran. I imagine it could take a while. Good luck to you, too. I know all this is difficult and we kind of have to figure things out ourselves because doctors aren't as all-knowing as we might wish they were. If you do decide to try remicade again, I'd take a half a .50 mg. xanax before bed to help you sleep. I do that on occasion and it really helps. I didn't have any muscle pain when I was just on remicade - that started after I got on the Imuran. I hope all your pains so away if you decide to discontinue the Imuran and try remicade or something similar. Please report back to us and let us know how you are doing!
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Caregiver for mother with Alzheimer's Disease (for Alz. forum)

calvin1242
New Member


Date Joined Dec 2016
Total Posts : 19
   Posted 2/20/2017 6:35 PM (GMT -6)   
Just wanted to report back. I started remicade again two weeks ago and its crazy but i didnt get any anxiety, insomnia, or panic attacks this time which is great except now i'm afraid that because i stopped remicade after the first infusion and didn't restart until two months later that its not gonna work for me. I could just be worried over nothing and it might just take a little bit for it to kick in. My next infusion is on march 8th a month after my first because of insurance purposes. I guess i'll see how it goes.

Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 595
   Posted 2/20/2017 9:29 PM (GMT -6)   
That is great that you didn't get the anxiety, etc. after the remicade this time! Try not to worry about it not working, though. If you don't get the results you need your doctor can increase the dose perhaps or allow you to get it more often. But it may work just fine. Thanks for the update and please let us know how the remicade is working for you!
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Caregiver for mother with Alzheimer's Disease (for Alz. forum)
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