Re: Lost my battle- so far

[Guest guest]

Dennis, You may not be able to come off the prednisone after that

long. But, as my rheumy told me, If I can get my dose to the lowest

amount possible that he would be happy. Just when I get it down toe

5mg, something happens. I ended up with pneumonia back in April and

had to up my steroids, then I had to stop my Enbrel and ended up on

higher doses of steroids, and now I just had surgery and had to up

my steroids!! Can't seem to win for losing!!

Then the neurolosist telling you that your clothes are too

tight!!!! What the heck kind of quack is he?!?! Sounds like a

nerve compression to me. I have a lot of bone on bone in my spine

and it causes that kind of pain and numbness, as well. I would say

that you need to get a new neurologist!!!!

Don't forget to take your meds!! I've done that, too and I've ended

up paying the piper, just as you have. If you are having that much

difficulty, then you should call your rheumy and see what he says.

You probably need to stay on the steroids a little while. You will

need to take it very very slowly, but I wouldn't do this without the

rheumy helping.

I pray that you feel better soon and have better luck with the

prednisone and your pain.....Gentle hugs, Marina

[Guest guest]

Sorry that you continue to have such a rough time of it, Dennis.

That neurosurgeon is a goofball.

I would see an endocrinologist about weaning off the prednisone. Funny how,

as a group, primaries and rheumatologists are very good at prescribing

prednisone, but not very good at getting their patients off of it.

Merck

Best Practice of Medicine

" Glucocorticoid Therapy and Withdrawal " :

http://merck.micromedex.com/bpm/bpmviewall.asp?page=CPM02EN313

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Lost my battle- so far

>

> I've been taking Prednisone for more than 15 years and my doctors have

> been

> wanting me to quit taking it. So, I started 2 months ago by going down one

> mg at a time every 2 weeks or so. At the same time I was taking MS Contin

> for pain and thought it was helping. I got down to 7 mg and was doing ok,

> but had another sudden bout of Pneumonia and ended up in the CCU for more

> than a day and in the hospital for another few days. I thought I was doing

> well with the prednisone, but I started having more trouble with my lower

> back, right hip, and right leg. I have had trouble with the thigh muscles

> being numb, tingling, hurting and feeling cold, so I went to a

> Neurosurgeon

> about 5 years ago. He did lots of tests and announced that he had the

> answer

> to my problem! I was wearing my clothes too tight. I guess he gets paid

> for

> that, but I surely wouldn't, and didn't.

>

> 2 weeks ago, I forgot to put my anti-inflammatories in my pill cases,

> forgot

> to take my meds on Sunday night, and didn't have any methotrexate until

> Tuesday. By the time I figured out why I hurt so much, I couldn't stand

> myself. I'll try not to do that again.

>

> So, to today's trouble. For the last few weeks, I could only sit or stand

> leaning to the left and forward a little to take pressure off the nerve

> being pinched in my back. I can hardly walk, sit or stand without pain.

> The

> pain is in a line from my lower lumbar to my right hip, and then down the

> leg depending on how bad the pinch is, I guess. It'll sometimes go to my

> ankle. I was supposed to go to my doc yesterday, but had nobody to take

> me,

> and didn't feel safe trying it by myself, so I had to cancel. I really

> don't

> know if I should see another specialist, rheumy, or my Doc first. It

> became

> unbearable so I went back up on my Prednisone to 10 mg and it's a little

> better. What's the secret to getting off it?

[Guest guest]

Dear Dennis,

My prednisone story begins when a neurologist put me on 50 mg and then told

me to make an appointment with a rheumatologist to taper off after a couple of

weeks. Boy did I feel great!!!! I only needed about 4 hours of sleep and when

I woke up in the morning I practically jumped out of bed....oh the memories of

a painless life!!!! When I finally did get into a rheumatologist 6 weeks

later, he freaked out and swore at the neurologist and said that it was INSANE

to be on that much prednisone. I started going down by 5 mg for one week and

it wasn't too horrible until I went from 15 to 10. I woke up every morning

for about two weeks feeling like I'd been hit by a truck. I almost lost my

mind, literally. Fortunately I still had pain meds left from my neurologist's

prescription until recently. After the 10 mg dose I started going down by 1 mg

every two weeks. The first day isn't too bad, but in the middle of the second

day of the reduction I feel

horrible--exhausted and my muscles hurting more than I can describe. Then,

after a few days it starts to get better, and then I go down and the whole

thing starts over again. If there's a better way I'd sure like to know, but I

think the suffering is inevitable. I'm down to 7 now, and he's going to keep

me on the current dose for three to four weeks at a time until I get to five

and then I can coast for a while. It's been a trip through hell, but I guess we

just have to remember that each crash will last only a little while and then we

can coast before the next crash. I'm sorry this isn't more encouraging. Just

remember that it's temporary and hopefully you'll be on some better meds. I

am now on methotrexate and plaquenil and lots of prayer and I'm finally

beginning to think I'll make it without the prednisone. The time between

crashes is getting more comfortable.

God bless, laura

Dennis W <betnden@...> wrote:

I've been taking Prednisone for more than 15 years and my doctors have been

wanting me to quit taking it. So, I started 2 months ago by going down one

mg at a time every 2 weeks or so. At the same time I was taking MS Contin

for pain and thought it was helping. I got down to 7 mg and was doing ok,

but had another sudden bout of Pneumonia and ended up in the CCU for more

than a day and in the hospital for another few days. I thought I was doing

well with the prednisone, but I started having more trouble with my lower

back, right hip, and right leg. I have had trouble with the thigh muscles

being numb, tingling, hurting and feeling cold, so I went to a Neurosurgeon

about 5 years ago. He did lots of tests and announced that he had the answer

to my problem! I was wearing my clothes too tight. I guess he gets paid for

that, but I surely wouldn't, and didn't.

2 weeks ago, I forgot to put my anti-inflammatories in my pill cases, forgot

to take my meds on Sunday night, and didn't have any methotrexate until

Tuesday. By the time I figured out why I hurt so much, I couldn't stand

myself. I'll try not to do that again.

So, to today's trouble. For the last few weeks, I could only sit or stand

leaning to the left and forward a little to take pressure off the nerve

being pinched in my back. I can hardly walk, sit or stand without pain. The

pain is in a line from my lower lumbar to my right hip, and then down the

leg depending on how bad the pinch is, I guess. It'll sometimes go to my

ankle. I was supposed to go to my doc yesterday, but had nobody to take me,

and didn't feel safe trying it by myself, so I had to cancel. I really don't

know if I should see another specialist, rheumy, or my Doc first. It became

unbearable so I went back up on my Prednisone to 10 mg and it's a little

better. What's the secret to getting off it?