I'm new to this Forum...

[Val1227]

Hello, I'm Valerie - I was diagnosed in September 2011 -- Positive ANCAs, elevated CRP, unbelievable fatigue, joint pain, malaise, eye problems and ear problems - am on 25mgs MTX and prednisone taper since September (down to 3mgs/day now) - and all the joint pain and fatigue is coming back....and I'm extremely bummed out. I hate prednisone and want to get off of it very badly. Thanks for listening. I live in New York

[pberggren1]

Welcome Val. Maybe the taper on pred is too fast. You might have to bump it up a bit. Do you have a Wegs specialist?

[Val1227]

Hi, yes, Dr. Spiera in NYC. i'm calling him tomorrow about the Pred...I started at 20 in September...would that be too fast a taper even though it's already March?

[Val1227]

I should say that another Dr has been managing the meds....Dr Spiera is consulting -- I may switch to him

[Dryhill]

Valerie, welcome to the forum, this is the place to get any questions answered.

I started on 60mg of Pred back in December 2010 and am now down to 10mg, during a lot of that time I was on 1,000mg infusion of cyclophosamide every three weeks and 20mg of methotrexate orally a week. It does not surprise me that the pains are returning when you go from only 20mg to 3mg of Pred in just six months. Are you sure either of your doctors have any experiance in treating patients with WG?

Sangye, Phil and Al any comments?

Jim

[Dryhill]

I assume you mean Robert F. Spiera? If so it would be best that you switch everything to him, his write up mentions that he specialises in all forms of Vasculitis and also mentions WG. My consultant decides what my meds should be and my GP just ok's the repeat prescription.

Jim

[Al]

Hello, I'm Valerie - I was diagnosed in September 2011 -- Positive ANCAs, elevated CRP, unbelievable fatigue, joint pain, malaise, eye problems and ear problems - am on 25mgs MTX and prednisone taper since September (down to 3mgs/day now) - and all the joint pain and fatigue is coming back....and I'm extremely bummed out. I hate prednisone and want to get off of it very badly. Thanks for listening. I live in New York

Welcome, Valerie. Believe it or not, 3 mg of pred is almost "why bother". This is less steroids than the adrenal glans produce naturally--assuming they are working properly. The reason that doctors usually want a slow taper is that it gives the adrenals time to restart after having been on holiday. (If they do not, this is really bad news--potentially very bad for you.) My guess is that the joint pain and fatigue is due to a very fast taper. (For instance, I was diagnosed in March of 2010, starting at 60 mg. I am down to 10, but have not been able to get below that, despite a couple of attempts, when the symptoms started creeping back.) Let us know about your progress!

Al

[annekat]

Welcome to the group, Valerie. I'm not as in the know as some people here, but I was dx'd with WG in April 2011 and started on 60mg. prednisone and now, almost a year later, am at 10mg. and expect to be for awhile. I think 20mg. is lower than most of us started on and 3mg. sounds like a pretty low amount to be on after 6 months. I've learned on here that tapering gets a lot trickier the longer you are on any amount 20mg. or higher. So I'd have more trouble going to 3mg than you would, considering I've been on it nearly twice as long and at a much higher starting dose. But it still sounds low, as Al says, and like you were tapered too fast. When going below 20mg., I had to ask my doctor to let me go slower than he wanted me to. I am a lot more tuned in to my body than he is, and he agreed. I guess I don't hate prednisone as much as some people, but still would like to be off it, for my body's sake.... however, I'd rather keep the dosage up to where I don't have to suffer the return of joint pain and other symptoms.

You've come to the right place, feel free to ask anything and chime in on anything! I have also gotten a lot of good info by searching the archives and reading old posts.

Anne

[Sangye]

Hi Valerie, welcome to the group. I don't think that the pred taper was too fast at all. Pred-taper pain does not persist more than a few days after tapering each dose. Pred-taper fatigue usually presents as afternoon sleepiness. I suspect that the symptoms you're experiencing may be due to increasing Wegs activity. I would make sure Dr Spiera knows about it as soon as possible. Sometimes a temporary increase in pred is all that's needed to put the Wegs dog back to sleep. I'm relieved you have excellent doctors who know Wegs.

[annekat]

Valerie, listen to Sangye. She knows way more than most of us on here. All of this is so complicated, and we are all trying to figure it out day by day, and it doesn't always do to compare our symptoms and dosages to those of others. I'm glad to hear that Sangye thinks you have top notch Wegs doctors. I hope you will continue to post regularly and let us know how it's going.

Anne