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

[JanW]

Yes, Spiera is at the Hospital for Special Surgery and a close colleague of my doc there Arthur Yee. I have mainly windpipe and nose involvement - surgery corrected the saddle nose last month and surgery opened my windpipe in March 2010. I have successful reduced from 17.5 mg mtx to 5 mg over two years under Dr. Yee who also took the unusual step of trying to get me into remission without pred (which worked). I cannot recommend the docs and staff at HSS Rheumy highly enough - Spiera is a noted expert in this field - much more so than my doc, who is still quite good and has WG patients on the roster. If you have ENT problems I go to Bob Lebovics at Roosevelt - leading WG expert as well and now on the board of the VF.

[mishb]

Hi Valerie and welcome to the best forum for WG

I also started with joint pain, eye, ear and sinus troubles. I started on 20mg pred 12 months ago and have been on 5mg for the past 6 months, and will stay at this amount until July at the earliest. Also on 20mg of MTX.

You have come to the best place to ask questions and search other posts for answers.

I hope you can get the pains under control soon and take care.

[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 YorkWelcome, 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

[HopeinTN]

I had similar issues when going from 30 mg pred to 20 mg and again from 20 mg to 10 mg. I don't like big decreases when tapering.

[annekat]

I had similar issues when going from 30 mg pred to 20 mg and again from 20 mg to 10 mg. I don't like big decreases when tapering. As I understand it, a lot of the problems with tapering have to do with how long you've been on the higher doses, 20mg. or above. Am I right, Sangye and others? I had some problems tapering from 60 to 20mg., but the most problems below 20mg. At that point, you may be reducing the pred by a greater percentage than you were at the higher doses. I have still not experienced tapering below 10mg. and am not really looking forward to it, except for the possibility of eventually getting off pred.

Anne

[Val1227]

Thank you all for your responses. I should have also said that i have Limited WG - and I believe that is why I have started on lower doses of Pred than full WG patients. the 25mgs MTX has helped.... I am waiting to hear back from Dr Spiera -- and will let you know what he says! Thank you for your support. It's great to be a part of this illustrious group - Valerie

[annekat]

Thank you all for your responses. I should have also said that i have Limited WG - and I believe that is why I have started on lower doses of Pred than full WG patients. the 25mgs MTX has helped.... I am waiting to hear back from Dr Spiera -- and will let you know what he says! Thank you for your support. It's great to be a part of this illustrious group - Valerie I'm glad to hear they are calling it "limited". I'm sure your docs know what they are doing, and I'm looking forward to hearing more.

Anne

[Dryhill]

I'm glad to hear they are calling it "limited". I'm sure your docs know what they are doing, and I'm looking forward to hearing more.

Anne

Yes Anne, it might be "limited" to the docs but to the poor person who has it, it sems far from limited. There are days when I find it limits what I can do, so in a way I suppose it is is limited or rather limiting.

Jim

[Val1227]

Yes, the WG has definitely LIMITED my lifestyle! They are calling it Limited WG because I only had 1 granuloma on the lung and no kidney involvement....
Valerie

[annekat]

Yes Anne, it might be "limited" to the docs but to the poor person who has it, it sems far from limited. There are days when I find it limits what I can do, so in a way I suppose it is is limited or rather limiting.

Jim
Yes, I realize that "limited" is sort of a questionable term. I'm just glad that she doesn't have kidney involvement at present, and not a lot of lung involvement. We all need to realize we could have worse complications in the future than those we currently have. And I know how much any Wegs limits the lifestyle. I suppose I could be called limited now that my lungs are cleared up, but I still have Wegs, am still on CTX and pred, and it is still an everyday issue, some days worse than others.

Anne

[Sangye]

As I understand it, a lot of the problems with tapering have to do with how long you've been on the higher doses, 20mg. or above. Am I right, Sangye and others? I had some problems tapering from 60 to 20mg., but the most problems below 20mg. At that point, you may be reducing the pred by a greater percentage than you were at the higher doses. I have still not experienced tapering below 10mg. and am not really looking forward to it, except for the possibility of eventually getting off pred.

Anne
Basically the two types of problems that you can have with tapering pred too quickly are 1) causing the disease to flare or 2) trouble getting the adrenals to start working again.

It's definitely more difficult to taper pred the longer you've been on it. The main sticking places are 20mg, 10mg and 5mg. People with heavy sinus involvement have the most difficulty tapering below 10mg. If they can get lower, they often can't get off of pred completely without having sinus problems. But there is always hope! Elephant was in that category and was on pred a long time. She chipped away at it for months and months and just recently got off of pred.

You might be just fine below 10mg, Anne. Everyone is completely different and it's completely impossible to predict!

[annekat]

You might be just fine below 10mg, Anne. Everyone is completely different and it's completely impossible to predict!

Thanks, Sangye! I don't feel ready to go below 10mg. yet but that's encouraging for when I do try. Thanks for the additional explanation.

Anne

[Al]

Thanks, Sangye! I don't feel ready to go below 10mg. yet but that's encouraging for when I do try. Thanks for the additional explanation.

Anne
Yes, Anne: impossible to predict. When you are ready to make that leap, we're right behind you to pick you out of the mulberry bushes!

Al

[Sangye]

Or celebrate that it went way better than you thought was possible. :wink1:

[annekat]

Thanks, Al and Sangye. I'm just afraid that my doc may try to make me taper faster than I want to and I'll have to argue with him. Good to have you on my side! And I love the mulberry bush metaphor. I never would even have known this might be an issue if not for this forum, that low dose tapering now would be any different from the short 10-day tapers of pred I used to have for "sinus infections" before I'd ever heard of Wegs. I feel very much empowered as a result of having come here.

Anne

[Sangye]

That's great, Anne. I wish I'd known in my early days, too. My originally rheumy tapered me off pred too quickly. I had tons of pain, which he attributed to pred-tapering pain. I was also extremely weak. I had no idea what was going on. What I later discovered was that not only had my adrenals not come back to life, but the Wegs wasn't under control, either.

[crackers]

i've been on 5mg of pred for the last two years and had an adrenal test done in february.the results were that although the gland was a little sluggish it had improved since my previous test 2 years earlier.if it continues to improve over the next few months i may be able to remove pred from my long list of pills to be taken every morning.wooo hooo! john.

[Sangye]

John, if you don't need the pred to control Wegs you might want to work with an endocrinologist and switch to hydrocortisone. It more closely resembles the body's natural cortisone and it's much easier to taper than pred. I feel worlds better on an equivalent dose of HC. I'm glad I pushed Dr Seo to send me to an endocrinologist. She was the one who suggested HC.

[crackers]

thanks sangye.i wasn't aware of HC as an alternative to pred.i'll mention it at my next appointment. john.

[beeinformed]

Thank you all for your responses. I should have also said that i have Limited WG - and I believe that is why I have started on lower doses of Pred than full WG patients. the 25mgs MTX has helped.... I am waiting to hear back from Dr Spiera -- and will let you know what he says! Thank you for your support. It's great to be a part of this illustrious group - Valerie

Hi Valerie!

I would appreciate it if you could share your thoughts/observations of Dr. Spiera, as I am asking this request on behalf of someone who wishes to consult with him.

She would like to see him but wants to get more feedback about him before making an appointment to see him as his consultation fee is $500.00.

Thanks in advance for sharing your thoughts/observations about Dr. Spiera! :smile1:

[CarrieZ]

I am responding as I just had a consult with Dr. Spiera 2 weeks ago. He was an azamzing and smart doctor. I was just diagnosed in January and Dr. Spiera was not only incredibly smart but honest and answered every and any question i had. I am planning to continue to use him and visit him every year as long as i keep up doing well. if i have a flare or plan to try and get pregnant i will probably utilize him more, but my every day dr. seems to be doing a great job for me. I would definitely recommend Dr. Spiera to anyone.

Let me know if there are any questions you have in particular. Well worth the $$$.

[Val1227]

Thank you everyone for all of your support and advice
valerie

[Val1227]

Hello -
I highly recommend Dr. Spiera (I saw Robert). He was extremely generous with his time and is clearly the expert in the NYC area. The consultation fee is worth it, although it is very expensive. I am seeing him again on April 24th. I completley trust him.


Hi Valerie!

I would appreciate it if you could share your thoughts/observations of Dr. Spiera, as I am asking this request on behalf of someone who wishes to consult with him.

She would like to see him but wants to get more feedback about him before making an appointment to see him as his consultation fee is $500.00.

Thanks in advance for sharing your thoughts/observations about Dr. Spiera! :smile1: