Re: Prednisone Reduction Plan

[Guest guest]

Hi Connie.

The technique of gradual weaning is just what I am going through now.

It has to be done slowly, and I can certainly attest to the fact that

after a drop in prednisone you feel pretty rotten for a while.

But some (possibly most) people are not going to be able to get below

a certain minimum dose of the steroid without, to start with, a

flare -- which can be tolerated -- that may well turn into a full-

blown recurrence of the myositis in its active form -- which

absolutely requires medication to stop.

Most of the people on the board seem to have been on prednisone for

several years, and have not been able to get off the drug totally

without the disease coming back. There are some exceptions, and I

think S (and possibly Dineen) fall into that group. I'm sort of

hoping that I'll be one of these, too. My evil rheumatologist, when I

bumped into him at the hospital yesterday, told me to stop my

plaquenil and see what happens, so I am on the downward spiral with

my medication. Here's hoping I'll get to reduce the prednisone again

in three weeks' time.

Stay warm.

Mike B

[Guest guest]

Hi Vicki.

Yes, that is the intent. The thought is that if you get plaquenil,

which helps the rash, then you can get by with less prednisone. So it

works as a steroid-sparer. It also has less side effects than some of

the other side order drugs like methotrexate.

In my case, when my rheumatologist saw me yesterday, he observed that

I was kind of red-skinned, and after just taking a quick review of my

bloodwork (still excellent) and confirming that I had no muscle pain

or weakness, he said that it didn't appear that the plaquenil was

doing much for me any more, and that we'd stop using it and see what

happens.

Now I'm not entirely sure I enjoy being a walking treatment

experiment, but when you think about it, we all are. So I've been

told that, if the redness gets worse, or if I start to get the skin

lesions again, I should call right away. If things stay the same then

pretty obviously I don't need the plaquenil any more. I see the

doctor in three weeks time, anyway.

Take care.

Mike B

[Guest guest]

Well, my wife says that (apparently like most males) I am

continuously scratching something or other, but I sort of think she's

just teasing me.

The only time I was really itchy was when I had the lesions on my

arms and in my hair. Not a pleasant few months. The stuff in the

scalp was particularly nasty, and stayed for several months after the

arm problems left.

As for the plaquenil stoppage, I hope you are right. I am really

looking forward to getting off as much of the meds as I can. I guess

I'll know more in a few weeks.

Mike B