Need your opinion - especially Mattt

[Guest guest]

Hi guys. I haven't even checked the posts for the last couple of

days. I have been extremely busy, coping with the " DT's " (although

that seems to be over with for now) and a bit strung out. We are

having a birthday party tomorrow for my youngest daughter tomorrow.

So, I am not even going to try to check the posts today. Maybe get

through a few later tonight if I am not too tired. I am still very

very tired. As you all know I am having a terrible time trying to

taper off these very high doses of steroids, and now the increase in

the dosage to stabilize me again. It has really put me into a funk.

I am very frustrated and a bit depressed over the whole thing.

I have been toying with an idea for the last several days, and before

I see Dr. Beebe on Wednesday I would like to see exactly how crazy

this sounds. My proposal is that the week after Christmas (both my

kids will be gone to family's houses so it would be an opportune

time) I go into the hospital and quickly drop say 20mg or 25mg or so

of the steroids. That would put me down to 30 or 35/day leaving the

hospital and then we can continue the snail pace taper. That would

also put me down to the point where we need me to be to start being

able to really measure the effects of the methotrexate to see if it

is going to be able to work with the steroids to keep my lungs stable

(my lungs have never " siezed " until I have been under 30mg/day). So

that seems to be the magic number. Also, it should really reduce a

lot of the side effects from these high high dosages. Has anyone

ever heard of doing something like this? I went into DT's and the

beginnings of renal failure after only dropping 10mg over a months

time. Seems that my body really likes the steroids. I have

developed a major physical addiction. With the new step down

schedule it will take about 6 months or more to get me to that magic

30mg/day number. It could be that it would just be too hard on my

body to do this. I don't know. Anyway, what do you guys think?

Just how crazy does this sound?

Madeline

[Guest guest]

I talked to my pulmonologist about the exact same thing. He said absolutely not.

That I am too steroid dependent to drop that quickly and that it would be very

dangerous. I can & #39;t get below 30 either. This week has been a really bad

week! I think it & #39;s due to our cold weather.

Madeline wrote:

> Hi guys. I haven't even checked the posts for the last couple of

> days. I have been extremely busy, coping with the " DT's " (although

> that seems to be over with for now) and a bit strung out. We are

> having a birthday party tomorrow for my youngest daughter tomorrow.

> So, I am not even going to try to check the posts today. Maybe get

> through a few later tonight if I am not too tired. I am still very

> very tired. As you all know I am having a terrible time trying to

> taper off these very high doses of steroids, and now the increase in

> the dosage to stabilize me again. It has really put me into a funk.

> I am very frustrated and a bit depressed over the whole thing.

> I have been toying with an idea for the last several days, and before

> I see Dr. Beebe on Wednesday I would like to see exactly how crazy

> this sounds. My proposal is that the week after Christmas (both my

> kids will be gone to family's houses so it would be an opportune

> time) I go into the hospital and quickly drop say 20mg or 25mg or so

> of the steroids. That would put me down to 30 or 35/day leaving the

> hospital and then we can continue the snail pace taper. That would

> also put me down to the point where we need me to be to start being

> able to really measure the effects of the methotrexate to see if it

> is going to be able to work with the steroids to keep my lungs stable

> (my lungs have never " siezed " until I have been under 30mg/day). So

> that seems to be the magic number. Also, it should really reduce a

> lot of the side effects from these high high dosages. Has anyone

> ever heard of doing something like this? I went into DT's and the

> beginnings of renal failure after only dropping 10mg over a months

> time. Seems that my body really likes the steroids. I have

> developed a major physical addiction. With the new step down

> schedule it will take about 6 months or more to get me to that magic

> 30mg/day number. It could be that it would just be too hard on my

> body to do this. I don't know. Anyway, what do you guys think?

> Just how crazy does this sound?

> Madeline

>