It is good to know...

[annekat]

Anne, I'd never had any ear trouble either!! GPA is sneaky.

Yes, and ENTs like mine should know by now that when it suddenly happens in a middle aged adult, WG should be suspected! I guess mine knows now. I have heard of many cases on this forum and on Facebook where a big, weird ear infection was the first major sign!

[blm]

Tapering down my prednisone is in process. I've dropped from 50 to 40 today. Feeling exhausted, muscle cramps, and sore throat. Anyone else have these kinds of things happen? I see my rheumy today so I'll ask him too, but I'm not sure what his experience with WEGS is. I know you all know more.

Just want to know if this is normal.

Thanks,
Becky

[BookNut]

I plan to read this thread thoroughly tonight. Becky, I do NOT have Wegs....but I have respiratory symptoms that are similar and were once thought to be Wegs. I stop into the forum now and again when i see posts that are relevant for me, especially if I think i can help. i am having a rough time getting off prednisone, so i will be looking at the various points of view. It struck me that going from 60 to 40 was a rather big drop....and Anne's point about percentage of tapering made sense to me. My latest effort got me to 8 mg, but when i got to 7 i had trouble. I was going down1 mg every three weeks. My PCP is suggesting that I go six weeks before dropping one mg and see if that works. I had to go back up to 15 recently, so it will be a very slow go. I am glad you posted this question. I hope you are/ will be feeling better! And you certainly have found the right place to ask questions. The "brain trust" here is amazing...not to mention the level of kindness, sympathy and concern. A true "band of brothers"are these Weggie Warriors!!

[annekat]

Tapering down my prednisone is in process. I've dropped from 50 to 40 today. Feeling exhausted, muscle cramps, and sore throat. Anyone else have these kinds of things happen? I see my rheumy today so I'll ask him too, but I'm not sure what his experience with WEGS is. I know you all know more.

Just want to know if this is normal.

Thanks,
Becky

Based on my experience, it is likely the disease itself and not the pred drop that is making you feel so bad, though I'm not sure about the sore throat, because I don't remember that. You are still pretty early on in treatment, and it will take awhile for the immunosuppressant to work. The symptoms may be increasing in the meantime, although the pred should help with those. You are still at a pretty high dose of that. For the first month and a half, I could barely leave the house, except for small trips to to grocery store or doctors' appointments. Then I was able to go out and engage in public, income-producing activities, but still felt pretty woozy and shaky from the disease and the meds and really had to take it slow. Just remember that every case and every patient is a little different, and things will not be very predictable. When you feel yourself getting better, it will mean the meds are working and you are on the right track. I did not feel any real effect from pred tapering until I was down around 20-15mg, or even lower, but it could be different for you. Best of luck!

[blm]

Thanks Anne -

You said almost exactly what my Rheumy said today at my appointment. See...you guys know your stuff!

- Becky

[annekat]

Awesome!

Sent from my MotoE2(4G-LTE) using Tapatalk

[Titus3:2]

Hello,and welcome blm.I saw your post on Mike's thread,and will comment here instead.You do need a good PCP,Mine is my favorite doctor.Rheumatology,Pulmonary,Etc,do not want to be bothered with anything else that might come up.Like high blood pressure.Try finding one in internal medicine.Unfortunately,your misdiagnosis is still all to common.And it is easy to become alienated from your doc's if you don't tip toe around their ego.Wish I had some good advice for you.Take care,Keith.

[Jaha]

Welcome to the best forum ever, you are where you need to be for information on GPA. I am wishing you all the best with getting a good medical team together and yes the PCP is a very important part of that team. All the best to you with your treatments and please keep us inform on your progress. Take care of yourself!