Just an update on my situation.

[Aunnie]

Hi Rose,
Haven't checked in here in a few days...

The Atenolol slows my heart rate,lowers my BP ,and makes the SOB go away.
It makes me feel much stronger on a good day.

Hope this helps,
Aunnie

[Rose Cozzette]

thanks, I did look it up and since I already take a diuretic for my BP I will ask my doc abt it. if my house would just seel then I would really see how much I can do.

[jmmilliorn]

Good visit at Cleveland Clinic today with Dr. Villa Forte. She is the greatest! New chemo for awhile longer though--Cellcept. Don't know much about it yet. I'll start tapering off the steroids again. The leg rash problem last week was considered minor. My anemia is slightly better. CT scans of the lungs and sinuses were clear. Back on track to future remission I hope. Last week's flare up was just a minor derailment I hope. I'm still very short of breath however.

[pberggren1]

Hopefully the Cellcept will work for you. It worked OK for me until I flared. I flared twice while on it.

[Sangye]

That's great, Mike. Those micro-flares can be scary. Glad you got it under control.

BTW Cellcept isn't chemo. It's a targeted therapy that kills B cells. Diarrhea seems to be the only problem people have with it, but not everyone has difficulty.

[elephant]

I am on Cellcept, it has worked for me , good luck...hopefully you won't have any side effects!

[Rose Cozzette]

I have been on cellcept for just over a yr and doing ok w/it. had stomach problems until took it closer to meals, not 1 hr before. sangye suggested that. just decreased to 750 daily. how much are you on? my high dose was 1500. went to 4 mgs of preds today and dec. 1/2 mg now as tolerated. had 2 small flareups w/cellcept but not bad. doc hopes to have me off it by end of year so hopefully...

[jmmilliorn]

I'm taking 500 mg twice a day to start with. Just started on 8/20/11. I think the plan is to increase the dose after a few weeks. I have to take a blood test at the end of two weeks to see how it is going. It upset my system a little the first two days, but not today. The worst part about the recent leg flare up is having to go back to 60 mg of steroids per day. I was down to 5mg and nearly off them. Now it it will take another 15 weeks to get back to where I was. I'm continually weak and shaky on my legs and short of breath. That really irritates me. My PCP says it is the steroids and that they rob your extremities of energy. Sounds logical.

[Rose Cozzette]

it seems that now I dont have to go so high on the preds with a flareup and then can come down more quickly until 5 and the go slow again. so maybe yu can look forward to this. I do feel better on this lower dose and can do more, tho still limited. sigh...

[Sangye]

I'm continually weak and shaky on my legs and short of breath. That really irritates me. My PCP says it is the steroids and that they rob your extremities of energy. Sounds logical.

I hope you get stronger soon, Mike. That was a very astute comment from your PCP. I've never heard an MD say that but it exactly how pred feels to me. Thanks for sharing.