Re: Re: Prednisone Reduction Plan

[Guest guest]

Mike, refresh my memory again... is the Plaquenil used for the rash ???

I can't remember if that's correct.

Vicki

[Guest guest]

Oh, Ok.... Do you itch or is that only when you have open lesions?

You've done really well getting back to almost normal. I'm sure getting

off the Plaquenil will be a breeze for you.

Vicki

[Guest guest]

Hi Mike :-)

Here's wishing lots of success in reducing your prednisone. You mentioned that some or most people will not be able to get below a certain minimum dose.... Well... (here she goes again, I know some of you are thinking :-), that would be people who haven't yet found the antibiotic protocol (AP). What I've seen with the AP usually goes like this: Those who were already on prednisone prior to starting the AP are gradually able to wean completely off and those who hadn't taken prednisone, won't have the need.

That's why I nag you guys so often about this :-) I have my DM totally under control without predinsone. My case isn't special or unique, either. I personally know several other PM/DM people who have had the same experiences. I won't argue that prednisone doesn't have its place, however. Some people really get off to a full bown attack from their PM or DM and prednisone can help to put the brakes on. The antibiotic treatment is a slow treatment but it really does work.

Not too many years ago you could hardly find a rheumatologist that would even discuss the AP. Ever so slowly they have come to admit that maybe it works...a little. Then, well, maybe it works, but only for RA and only in early, mild cases. Finally, more and more are trying it, and if they have the correct protocol, are finding that not only does it work for RA, but many of the other diseases, too. Someday, I hope they will all use the AP right from the start. One can only hope and pray :-)

Take care,

Connie

Re: Prednisone Reduction Plan

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]

Thanks Mike... I was just wondering because I've never seen DM close up.

Nor have I asked anyone about it that I've seen. There is a gentleman

at the clinic that has DM, really nice man, and I was getting ready to

ask him some questions when he was called in the room. The only thing

people with DM have over PM people is that DM is much easier to

diagnose...unless the doctor is a numb nut!

Vicki

[Guest guest]

has also been weaned very very slowly. He is down to 2.5 mg. every

other day and should be totally off in 3 more weeks. This makes me more

nervous and worried then I can say. The prednisone has caused the Avascular

Necrosis in his hip joint but it also what saved him. The next few months

should be very nerve wracking!!

Hugs,

Cari and

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Prednisone Reduction Plan

>Date: Fri, 30 Mar 2001 21:54:39 -0000

>

>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

>

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[Guest guest]

Vicki,

has been on Plaquenil for over two years. It is to keep the rash

under control. 's muscles haven't shown any sign of DM for over a year

but the rash still comes and goes and changes colors. The rash and the

muscles symptoms seem to be very independent of each other. He is still on

the same dose of Plaquenil as he was two years ago.

Mike - Let me know if you experience any side effects from decreasing the

Plaquenil and how your rash does. 's Dr. hasn't said anything about

taking him off of it yet. Just would like to know what to expect.

Thanks,

Cari and

>From: anzavic@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Re: Prednisone Reduction Plan

>Date: Fri, 30 Mar 2001 15:21:46 -0800 (PST)

>

>

>

>Mike, refresh my memory again... is the Plaquenil used for the rash ???

>I can't remember if that's correct.

>

>Vicki

>

>

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[Guest guest]

Cari.... is doing so well lowering his Prednisone. It will be

very interesting to see how he does in 3 weeks when he's off completely.

He just seems to take one day at a time and as a mother I'm sure you're

bitting your nails with worry. Hang in there and I'm sure the little

guy will do just fine. Give him a big hug for me.

Take care,

Vicki

[Guest guest]

Cari... that's odd, you would think when you have the muscle problem the

rash would also kick up.

Vicki

[Guest guest]

Thanks Vicki, I will give him a squeeze for you.

We are leaving on vacation tomorrow to visit my In-laws in West Virginia.

My In-laws just got an answering machine last year so it will be 1910 before

they get a computer. I will be out of touch for awhile. I will try and use

a neighbors if possible. I will go through withdrawel if I don't hear from

everyone! I was getting worried this last Mon., everyone was so quiet. I

hope everyone has a wonderful week and don't let anything exciting happen

while were gone.

love to all,

Cari and (go'in fishin')

>From: anzavic@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Re: Prednisone Reduction Plan

>Date: Fri, 30 Mar 2001 18:41:44 -0800 (PST)

>

>

>Cari.... is doing so well lowering his Prednisone. It will be

>very interesting to see how he does in 3 weeks when he's off completely.

>He just seems to take one day at a time and as a mother I'm sure you're

>bitting your nails with worry. Hang in there and I'm sure the little

>guy will do just fine. Give him a big hug for me.

>

>Take care,

>Vicki

>

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[Guest guest]

I know. I have read in many places, and 's Dr. has told us that the

muscle part of the disease and the rash part are independent of each other.

Very strange.

I bought a " new " extra-sensitive sunscreen for 's face and it started

to burn as soon as we put it on. We just put it on his nose to test it.

Anyone have any suggestions? I think we all had this conversation last

year!

Thanks,

Cari

>From: anzavic@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: Re: Prednisone Reduction Plan

>Date: Fri, 30 Mar 2001 18:47:22 -0800 (PST)

>

>

>

>Cari... that's odd, you would think when you have the muscle problem the

>rash would also kick up.

>

>Vicki

>

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[Guest guest]

Cari... Have a great time!

Vicki