Re: easing off prednisone & purple spots

[Guest guest]

I apologize Jim and Jackie and folks, like I said, I'm no pro at this

prednisone. I apologize because I didn't even know they made single

mg pills of the stuff!! I figured 10 mgs was the smallest! I guess

CT doesn't get out much =) I'm also sorry for your reaction, Jim,

when coming off the stuff . . . that IS scary!! I guess I was lucky,

but I did suffer terribly when I was on it and the pred weight hasn't

come off. All I've lost is a whole bunch of hair!

In answer to 's question about the purple marks left behind. I

was beginning to think I was stuck with them too when the lumps left

them there. But this Dapsone I'm on seems to be clearing that up as

well! I can barely see the purple (old) lumps and the newer red

ones, if I ignore the green, are much less angry looking. I still

feel 80 years old when I get out of bed in the morning; everything

hurts, but cross my fingers, I haven't had a new flare up with it's

horrible malaise in about 2 weeks. We're all different and we all

take different healing times, but I do think the purple will

eventually go away. Or maybe you could use the Dapsone, since pred

isn't completely clearing you out, like it didn't for me?? Ask your

doc! Gosh, that sounded like a commercial =) Yuk! Sorry!

Take care all! And Jim? Don't miss any pills, k? Not good for you!

M =)

> Hi,

> Just had to jump in here... I was told to take 10 mgs. per day for

2 months then ween off 1 mg. every two weeks until down to 7 mgs. and

see how things were going. By the time I reached 7 mgs. I had

another flare up and she now has me on 15 mgs. per day til the lumps

go away and then she wants me to go to 12 1/2 mgs. for one week then

slowly come down from there. You are right, usually they don't seem

to ween you a lot at any one time and I also think that's because

they want to find out the right dosage for your system to handle. I

am hoping I can get off this stuff as I'm not to pleased with the

side affects. I am also on Plaquinil and was taking 200 mgs. twice a

day and because of the flare up she now has me taking them 3 times a

day for a month. She's not sure if the Plaquinil is doing what it

should and may take me off it when I visit her on Sept. 13th. I've

been on the Plaquinil since April and should be doing something by

now. As for the Presnisone, I'm am surprised when I hear they have

people coming off it 10 mgs. at a time, that sounds scary to me.

>

> Jackie S.

> Re: Re: easing off prednisone

>

>

> Greetings M

> I have brain vasculits not EN.

> So, I think prednisone is different for me. More long term. Since

1993.

> Right now I am still on 45mg.

> 45 to 40 to 45 to 40 alternating days for two weeks

> Then staying on 40mg for one month.

> Then 40 to 35 for two weeks, and then one month on 35mg.

> Then continue this.

> Last time I crashed at 27.5mg, and had three brain hemmorages.

> Remember, I have vasculits, not EN.

> Going from ten to zero, does not sound good to me.

> I would think when down to 10mg. Reduce 2mg a week until 4mg.

> Then one mg until totally off.

> I hope I am not confusing you, because I sure am confusing

myself.LOL

>

> Your friend, Jim

>

[Guest guest]

Greetings M

Never apologize for anything please!

We are here to learn.

I still learn something new everyday.

Prednisone comes in

20mg

10mg

5mg

1mg

But I still use a pill cutter.

Design my own dose of prednisone.LOL

Yesterday I cut about 100 800mg Neurontin in half.

So many crumbs, I think about an equivilant of about twenty pills were crumbed away.LOL

Friends, Jim

[Guest guest]

Thanks, Jim =) and thanks for the 'why the body attacks itself'

article . . . I might just get that book . . . could be some answers

in it for me. I've had four babies, two of them in one sitting, so

to speak =) Seems odd that my body would turn against itself 15

years after the fact, but still something to look into.

Thanks again!

M =)

> Greetings M

> Never apologize for anything please!

> We are here to learn.

> I still learn something new everyday.

> Prednisone comes in

> 20mg

> 10mg

> 5mg

> 1mg

> But I still use a pill cutter.

> Design my own dose of prednisone.LOL

> Yesterday I cut about 100 800mg Neurontin in half.

> So many crumbs, I think about an equivilant of about twenty pills

were

> crumbed away.LOL

>

> Friends, Jim

[Guest guest]

Thank you for your offer... At the moment, I can't think of any questions to ask but I am sure I will have some in the future. Like you, I only have my own experiences to draw upon and I have only had this since March, 2003. It started with a painful lump about the ankle one morning when I awoke and it's been down hill since. The leg continued to develop more painful, swollen, red hot lumps over the next 6 months and even though I am now on medication, I had a flare up. When the first of the lumps eased, the lower part of my leg was still pink to red in color, with shiny skin and indents where the lumps had been. The ankle, leg and foot was so swollen I couldn't put on my regular shoes. At least the swollen part has improved with medication but I'm not sure what it will take to keep the disease under control, if anything. Thanks again for your offer ... Have a great and painless day.

Jackie S.

Re: Re: easing off prednisone & purple spots

Greetings JackieIf you have any questions, need advice or just anything, feel free to ask.Nothing is to stupid with these diseases.If you have a question for me just go ahead and ask, and I will try to guess the right answer for you:))But seriously, I can only tell you my experiences, what I have learned, and what I may think I have learned.Have a marvelous eveningYour friend, Jim

[Guest guest]

.. . . and I think I spoke (wrote) too soon. I remember I didn't

feel so great last week, but I attributed that to working full

time . . . I didn't feel well yesterday, but I attributed that to

having to go to court for a speeding ticket (I WASN'T

SPEEDING!) . . . But I was wrong on both counts, perhaps, because

before bed last night I found two new lumps =( or they found me!

Didn't realize I had them until I layed down for a while and upon

rising, they throbbed like the dickens! The new derm doc should be

calling me with the cbc today . . . I'll have to let her know about

the new ones. DANGIT! I was SO close to BETTER!

Have a better day, everyone!

M

> Thank you for your offer... At the moment, I can't think of any

questions to ask but I am sure I will have some in the future. Like

you, I only have my own experiences to draw upon and I have only had

this since March, 2003. It started with a painful lump about the

ankle one morning when I awoke and it's been down hill since. The

leg continued to develop more painful, swollen, red hot lumps over

the next 6 months and even though I am now on medication, I had a

flare up. When the first of the lumps eased, the lower part of my

leg was still pink to red in color, with shiny skin and indents where

the lumps had been. The ankle, leg and foot was so swollen I

couldn't put on my regular shoes. At least the swollen part has

improved with medication but I'm not sure what it will take to keep

the disease under control, if anything. Thanks again for your

offer ... Have a great and painless day.

>

> Jackie S.

>

> Re: Re: easing off prednisone &

purple spots

>

>

> Greetings Jackie

> If you have any questions, need advice or just anything, feel

free to ask.

> Nothing is to stupid with these diseases.

> If you have a question for me just go ahead and ask, and I will

try to guess the right answer for you:))

> But seriously, I can only tell you my experiences, what I have

learned, and what I may think I have learned.

>

> Have a marvelous evening

> Your friend, Jim

>