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Joint Pain After Ending Long-Term Steroid Use?

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Posted 10/29/2009 1:54 AM (GMT 0)
I've been steroid free since 9/16/09 after having been on varying doses (up to 60 mg) since June 2006. This is the first time I've been able to get off steroids. I believe it's due to starting VSL #3 around July/August, so I'm very thankful because maybe I won't have to start Humira like I was about ready to do (can't tolerate 6-MP).

Anyway, I've been experiencing joint pain (pain in hands, back, legs, etc) for about a month or so. It's not severe, but it's not normal for me. I'm stiff when getting up from lying down or sitting for a while. Is this just a temporary side effect from coming off of steroids or could I have come down with another autoimmune disease like rheumatoid arthritis but never known it since the steroids would have masked any symptoms? I don't think the VSL#3 would cause any joint pain since it's just a probiotic. I will be tapering down the VSL#3 DS by a packet each month to a lower maintenance dose as long as I stay well (I did double my dose about a month ago but that's probably just a coincidence), so I'll see what happens there. Just hoping I don't have another disease to deal with - one is plenty. I'm 35 years old but with the joint pain and the cataracts caused by steroids, I'm feeling more like 65 at times!

Jenny

moderate pancolitis - dx 6/1/06
Asacol 4800 mg, VSL#3 DS 4 packets, multivitamin, calcium
Posted 10/29/2009 2:17 AM (GMT 0)
Having been through several rounds with Pred myself I'd have to say the joint pain is normal.
The same thing happened to me when I began tapering off. I think the Pred interferes with
the bodies ability to lubricate the joints properly and it isn't noticed because the steroid
reduces the inflammation caused by the lack of lubrication. Also, during my flare ups I did
have joint pain. I have read that arthritis is common in some with UC due to the same
autoimmune deficiency that may cause UC. I hope this helps. I the information I provided
is not correct please correct me as I don't want mislead anyone. Good luck.

Later...
Posted 10/29/2009 2:24 AM (GMT 0)

I AM 69 and feel like it!  LOL

Yes, joint pain and aching muscles seems to be what I was left with after tapering prednisone and have heard this has happened to others.  Now, I have arthritis in my knees but after tapering I now have sore arms, hands and sometimes in joints of my elbow and pinky finger.  It do believe that after stopping prednisone August 14 it is finally getting some better.  I use BenGay and take Tylenol.  I am giving it another couple weeks before I ask the doctor to get an xray or tests.  I was on prednisone for 5.5 months.

ElaineNY

Posted 10/29/2009 1:19 PM (GMT 0)
I was on varying doses of pred for over 2 years. I tapered off after surgery and had joint pain for about a year after my last dose. It will get better as time goes on but this is normal.

Sue
Posted 10/29/2009 2:16 PM (GMT 0)
I had joint pain that last time I tapered pred. It eventually went away.
Posted 10/29/2009 3:44 PM (GMT 0)
Did any of you ever have it checked to be sure it wasn't something else?  I am older and assume joint pain is fairly normal.  I have two very bad knees that need replacing.  Been waiting to get this UC under control somewhat!!  Want to get one done early Spring for sure.  At least I don't feel worse but today is not a good day.  Woke up in pain and aches all over - kind of like hit by a truck!!

ElaineNY

Posted 10/29/2009 3:46 PM (GMT 0)

AND what did you do for the pain?  Try glucosamine? Anything else?  Hard to deal with at times!

ElaineNY

Posted 10/29/2009 4:22 PM (GMT 0)
I tried glucosamine but didn't find it helpful.

What worked for me, and I know this sounds counterintuitive, is exercise. When the pain was at its worse I regularly took a water aerobics class. This keep pressure off the affected joints. I also walked, despite the pain. Several years post UC I had some achy joints in the elbows which I thought was the onset of arthritis but after engaging in a weight bearing cardio fitness class I know longer have the pain.

I strongly believe that keeping fit, engaging in regular weight bearing and cardio fitness, is key to preventing joint pain and stiffness. I am amazed at the amount of 75+ year olds who work out DAILY at my gym. They move with freedom; they have no pain, and they look many years younger. I hope to be in their shoes at their age!

Sue
Posted 10/29/2009 4:51 PM (GMT 0)

I absolutely agree with you Sue.  If I had access to water exercise I might try it.  I would have to drive too far.  I cannot walk with a walker or at least a cane.  I try not to be lazy - do what I can until I get the new knees.  I believe the upper body exercise would help but so far anything I tried one day just made it worse the next.  I have been to PT before and that helped so maybe will go that route.  Right now it is becoming winter here so we can't drive too far, can't drive after dark and of course mornings are bad.  My husband has COPD and lung cancer and we get out but not to do much.   His arthritis is bad.  He did several weeks of PT for his back and arms and it made him worse.

I refuse to become lazy and will keep taking my Tylenol at its max.  Stretching helps so I do that several times a day. 

Thanks for your input. 

ElaineNY

Posted 10/29/2009 5:00 PM (GMT 0)
I agree with Sue also. I've had joint pain for years, since even before the UC started. Low impact or non-weight bearing exercise helps a lot, as does light weight work.

The post-steroid joint pain in my right shoulder turned out to be avascular necrosis. If the pain is getting worse instead of better after a while, it's time to get it checkes.
Posted 10/29/2009 5:20 PM (GMT 0)

Most of the discussion here has been JOINT pain.  I have had some joint pain for many years including my knees which now have no cartiledge.  THIS pain and aching now feel muscular only in upper arms, below the neck, and when I flex my fingers sometimes.  (something like when you pull or injure a muscle)

ElaineNY

Posted 10/29/2009 9:19 PM (GMT 0)
I've had the joint and muscle pain and heavy fatigue from tapering prednisone, cortisone enemas, and entocort. It goes away but takes 3 weeks to a month, I'd say.
Posted 10/29/2009 10:00 PM (GMT 0)
Thanks for posting this topic! It didn't even occur to me that the minor aches I've been feeling lately might be associated with the steroid taper. I'm down to 15mg for the first time since starting Pred in Dec 08, and I've been having aches in my hands, wrists and shoulders. I was worried about arthritis as well (wouldn't that be grand on top of UC!) but it makes sense that it could be attributed to getting off steroids. Why not? It causes so many other nasty side effects!
Posted 10/29/2009 10:18 PM (GMT 0)
KC70 -yes, I already had arthritis in knees and elbows BEFORE UC and it is no fun.  Now this aching too! 

Mitzo says maybe 3 weeks to a month and I have been off prednisone for about 2 months so hope it goes away soon!!

ElaineNY

Posted 10/30/2009 12:02 AM (GMT 0)
Yep, I had joint pain from the end of my steroid taper for a few months. The doc kept saying he didn't understand it since joint pains were usually associated with flares and I wasn't flaring at the time. But I've since heard of quite a few people this happened to after the steroids ended. It gradually just faded away for me over a few months.
Posted 10/30/2009 5:15 PM (GMT 0)
Thanks so much for all the feedback. I will give it some time then before I become concerned. I'm glad to hear that exercise can help because I don't want to stop the various projects I'm doing even though I get a bit stiff afterward. Since I was on steroids so long, it might even take up to a year. The pain/stiffness is not severe, and I'm just glad to finally be in a remission (praying I stay that way for a while!

Jenny
Posted 10/30/2009 10:58 PM (GMT 0)
I've been having enough joint pain that they had to re-up the prednisone after tapering for the last 8 months (I was down to 4 but now back up to 10). It was either that or a cortisone shot in my elbow...um, no thank you!

I would also recommend a bone density scan for anyone on long-term preddy...it can do wacky things to your body and best to know about them up front.
Posted 10/30/2009 11:11 PM (GMT 0)

I have had those cortisone shots in the knees before UC and before prednisone.  They took the pain away so I didn't mind.  I would have them again rather than go back on prednisone pills!

I think my aches and pains are getting better.  I have been sleeping better without pain.  I have been off prednisone since August 15 and only took it since March.   I would not hesitate to go back on the pills if I had a huge flare (pray I don't).  I had a bone scan before prednisone and it was VERY good for a senior!

ElaineNY

Posted 10/30/2009 11:14 PM (GMT 0)
I had to have a cortisone shot in my foot earlier this year and all I can say (without resorting to other four letter words) is OUCH!!!
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