Joint Pain

[kelly anne]

Hi All,
I have not been on this site for awhile but really need some input. I have been off of prednisone for 6 weeks now after being on for a year, tapering from 60 mg since last summer. When I hit about 10 mg around December I started having joint pain. My joints do not hurt at all when I am not using them. My feet are very sore when I first step on them in the morning but improve somewhat after I move around for awhile. Whenever I have been sitting for a while my first few steps are so uncomfortable I look like I'm eighty or drunk. As I get moving though, I can walk more normally but never completely comfortable. Also, my knees, shoulders, and hands feel arthritic, pain with usage. I have regular minor swelling in my hands and feet.

My doc and I have been assuming that the symptoms were pred withdrawal and I was happy to work through it to get off the drug. However, now I have been off for 6 weeks and have had no improvement. So now I am concerned it's more than that. Joint pain was one of the final symptoms I got right before dx over a year ago but never had it again once I started pred and even when I relapsed in the beginning of the summer...until a few months ago at 10 mg when it started. I have no other symptoms, including my main WG problem which was ear problems. My blood work shows no inflammation.

I have an appt with doc in 2 weeks but wanted to see if anyone has had similar experiences so I can be more informed. Anybody?

Thank you!

[windchime]

Hi Kelly

The foot pain, if it's related to the bottom of your feet, could be plantar fasciitis. That is basically an inflammation of the fascia on the bottom of your feet and is worse first thing in the morning. When I had it I did stretches, used ice at times and wore a boot to help the foot stay in a stretch. I also got a compounded cream for the bottom of my feet that helped with the pain. If that's what it is then I would see a podiatrist.

As for the joint pain it could very well be related to the pred withdrawal. When I get down to 10 mg I get muscle aches. My doctor suggested a very slow taper when I get to 15 and see if that helps. He means like 1 mg every three weeks or so. Time consuming, but I guess if it gets me off pred then it's worth a try.

Hope this helps a little.

[Pete]

Might be symptomatic of a relapse. How do your labs look?

[drz]

Hi Kelly

The foot pain, if it's related to the bottom of your feet, could be plantar fasciitis. That is basically an inflammation of the fascia on the bottom of your feet and is worse first thing in the morning. When I had it I did stretches, used ice at times and wore a boot to help the foot stay in a stretch. I also got a compounded cream for the bottom of my feet that helped with the pain. If that's what it is then I would see a podiatrist.

As for the joint pain it could very well be related to the pred withdrawal. When I get down to 10 mg I get muscle aches. My doctor suggested a very slow taper when I get to 15 and see if that helps. He means like 1 mg every three weeks or so. Time consuming, but I guess if it gets me off pred then it's worth a try.

Hope this helps a little.

Some people find they can't get below a certain dosage of pred without some residual symptoms showing up and often they need to remain at 5 or 10 mg for long term.

I was mistakenly diagnosed with plantar fasciitis too before my Weg diagnosis since the symptoms can be similar in the foot. Funny thing is it all went away when I got treated for Wegs.

[annekat]

When I had the worst joint pain was before I was ever dx'ed or had heard of WG. It would come and go for periods of time. I had taken pred for sinus infections and learned that way that it helped with joint pain. So a couple times when I had no pred on hand, I ordered it from an online Canadian pharmacy without a prescription. The more expensive way to do it, but I just wanted to deal with it on my own at that point, since I'd been found not to have RA in the past and didn't want to wait to see a doc. I found that 5mg. per day was enough to completely wipe it out; of course that was when my adrenals were still functioning. Once I was treated for WG it was no longer a problem, and now that my adrenals are shut down from pred use, I will still get a bit of it occasionally when tapering. I have yet to find out if I can get below 5mg. without it coming back in full force.

[kelly anne]

Might be symptomatic of a relapse. How do your labs look?

Fine. No inflammation, neg ANCA.

[woz]

Hi Kelly Anne, I have had some pain in some of my joints, mostly fingers and toes, for some time now, my bloodwork is great, I am thinking it may be peripheral neuropathy (damage to nerve endings), I am seeing one of my Doctors on Wednesday, will ask him if this maybe the case. My feet are hard to walk on sometimes, feel like a 80-90 year old, after a while walking, they get better, I also get really sharp pains in my big toes, it feels like a cross between a cramp, and someone jabbing a pin in them, 2 toes on my left foot, have been a little numb for a while now, my fingers are stiff and ache occasionally. I have been off pred for about 8-9 months, only taking azathiaprine. I don't think there is much I can do about it, but hope somewhere down the track, everything improves a little.

Regards Woz...

[windchime]

Hi Kelly Anne, I have had some pain in some of my joints, mostly fingers and toes, for some time now, my bloodwork is great, I am thinking it may be peripheral neuropathy (damage to nerve endings), I am seeing one of my Doctors on Wednesday, will ask him if this maybe the case. My feet are hard to walk on sometimes, feel like a 80-90 year old, after a while walking, they get better, I also get really sharp pains in my big toes, it feels like a cross between a cramp, and someone jabbing a pin in them, 2 toes on my left foot, have been a little numb for a while now, my fingers are stiff and ache occasionally. I have been off pred for about 8-9 months, only taking azathiaprine. I don't think there is much I can do about it, but hope somewhere down the track, everything improves a little.

Regards Woz...

I also get that sharp nasty pain in my big toes. UGH hate it when it happens.

[mishb]

Hi Kelly Anne, I'm sorry to hear that you are still having joint pains.

Do any of the over the counter NSAID's help with the pain?
I would continue to take a paracetamol/tylenol or the like if it works, instead of going back onto pred - however, it sounds to me like a couple mg of pred would help.

[Alysia]

instead of going back onto pred - however, it sounds to me like a couple mg of pred would help.

I would be back on pred.... but it is me, and my pred, prob forever :wub: :wink1:

[me2]

I think Michelle has a good idea to try and control the pain first with something other than pred. I know for my self joint pains are very tricky to identify- especially since I'm getting old. So, I try the nsaids first to see if it helps, talk to the doc about other possible causes-- and then wait for something new to develop. OR, go away. I hope for you they go away.
Keep your doctor in the loop.