I'm new to this Forum...

[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.

[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!

[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 $$$.