Severe Muscle Deterioration

[barb]

We are looking for some advice or to find out if anyone else has incurred this symptom. My husband Jack, 71 has wegener's, he has been ok for the past 19 months, taking very low dose of prednisone. 2 weeks ago, he woke up with severe back and leg pain with no ability to walk. we have since ruled out any spine or hip bone related issues. the doctors now think its some related lack of testosterone due to the prednisone usage. they are doing a lung catscan this weekend along with anca tests at our requests as we want to ensure its not a flare up of wegener's. has anyone else had these symptoms?

[Jack]

Yes, I've been trying to find the reason for the past 3 years! I've had the full range of tests on offer from Rhumatology, Neurology and Gastro Enterology with no positive result. The conclusion at the moment is that it is due to the steroids. I currently take 10 mg but have been on them for nearly 25 years.

Interesting that you should mention low testosterone as I have also noticed a lack of libedo. I thought I must just be ageing badly (I'm 54), my body certainly is! It is something I'll have to look into.

[andrew]

I would tend to think it would be the Pred too. Hopw long has be been on it and what dose is he on now?

[jola57]

I don't know if its only the pred, last year when my neuropathy started I was only on 20mg and highest on 40, after I tapered to around 5, neuropathy eased a bit but not a whole lot. Back pain was pretty bad. This year i was put on 60mg for 6 months and there was no increase or decrease in neuropathy or back pain. So the verdict is still out if its only the pred or cyclo. Maybe once the damage is done it doesn't matter any more how much pred we take

[barb]

Thank you for your quick responses. Jack's been on pred for 2 years, last year around 8mg. We are concerned that the sudden severe muscle pain that started 2 weeks ago is a flare up of wegener's. Doctors are not sure - locally they think its related to the prednisone and lack of testosterone - so that's the current treatment. But we are heading to cleveland clinic in 2 weeks for a consult around it.

[andrew]

Is there anything ealier than two weeks? If it's a flare then you might want it seen to sooner than that??

[barb]

Thanks Andrew, yes. An issue with the local doctors because they do not believe us. they are doing tests and finally called Cleveland on friday. Its quite amazing how most doctors just do not like to call others for advice. We are waiting for lung cat scan and c-anca tests, hopefully coming in the next 2 days. thanks for your supportive emails.

[Doug]

That's why it's great that you are actively involved in your husband's disease treatment. Keep it up! Learning all you can on the internet, here, through such places as the Vasculitis Foundation, you will be able to bring up issues that let your husband's doctors know you won't take answers meant to keep you placated and uninvolved.

[jola57]

Glad you stuck it out and they are doing the cat scan and c-anca, CRP sed rate should also be done, visit the vasculitis center website to see which test should be ordered since in a flareup not all are positive. When I flared it started with horrible muscle pain.