I'm new to this Forum...

[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!