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Prednisone


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#1 truman

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Posted 25 June 2008 - 06:55 AM

Ended my Prednisone Sunday and right on course got gradually sick. Monday was eh, Tuesday could begin to feel my skin crawl and tighten and was in and out of it. Went to bed 7 on Tuesday and could feel myself getting really sick. Got up and looked in the bathroom mirror and my entire body was lobster red and painful. Was thinking about calling my neighbor to take me to ER but decided to sweat it out until morning. This morning I was still debating on ER but didn't want to be admitted nor did I want to be back on the Prednisone. The touch of clothing on my skin was excruciating.

Couldn't stand the pain any more and feeling extremely light headed, I called the rheumatologist, who I should have probably had address this from the get go. I explained I was heading to ER unless he wanted me there; she said come right over. Call my neighbor and off we went. I was a complete mess; totally red and blistering, light headed, trembling and out of it.

He feels I just CANNOT be off the Prednisone at this time or in the near future. I'll be doing 30 mg for 2 days, 25 for 2 days and 20 mg per day thereafter, and included another antihistamine and potassium pills (I think that's where the light head came from lack of).

Came home and took the new meds. The trembling seems to have stopped but I still have a chill. I'm thinking of taking a nap and hoping for a big improvement upon wakening.

Prednisone may be a very serious and dangerous drug, but weighing the differences, I just can keep running to ERs and doctors and decided the pros outweighed the cons.
Tru

It is what it is...........

#2 bookworm

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Posted 25 June 2008 - 09:49 AM

Hi Tru,
I'm sorry you are feeling so rotten. My rheumatologist has stressed to me that you really do have to weigh the pros and cons in the drugs because it is sometimes necessary to take a drug that can have bad side effects in order to have any quality of life.
I have been on low dose (3-5 mg.) Prednisone for several years. I wish I didn'tneed it, but I am miserable and sick without it!

Feel better!

Mary in Texas

#3 nan

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Posted 25 June 2008 - 10:06 AM

Truman,
I am so sorry to hear about what you have been going through. I can't do prednisone because of my bleeding stomach. I know it has bad side effects, but you have bad effects if you don't take it. I hope you will feel much better soon.
Take care,
Nan

#4 CraigR

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Posted 25 June 2008 - 10:36 AM

It sounds like you may have tried to go off suddenly (when contrasting with your doctor's recommendation for tapering).

My understanding is that it is very dangerous to go off prednisone suddenly because, while taking the medication, your body has stopped making cortisol. Thus you must go off it slowly (gradual taper), so your body gets a chance to start making its own cortisol.

Several years ago I had an inflammatory condition (sclero related) and was on prednisone. It became obvious when the level was too low - I felt like I didn't have the energy to even sit up in a chair. But I was gradually able to taper off as the condition improved.

Craig

#5 truman

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Posted 25 June 2008 - 11:53 AM

Craig:

Actually I tapered off with the Prednisone 6 day pack upon leaving the hospital and became very ill the day after the last pill. This last tapering did not sound normal to me. It was 2 20mg for 5 days and 1 20mg per day for fives days. The whole concept of the last dosage seemed a bit too abrupt to me. The one that landed me in ICU sounded the smartest in that it took about 3 weeks of tapering. doctor seems to think allergic reaction was so severe that we need to really fool the body now. Took the Prednisone when I got home and the chills and tremors are now gone. Body burns still, like being burnt with an hot iron. Hope tomorrow brings more relief because I have a 11 am at the wound center.
Tru

It is what it is...........

#6 debonair susie

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Posted 25 June 2008 - 12:49 PM

tru,

Just read these poststo this thread of yours...
Girlfriend...I sure hope all of this levels out for you :(

No fun at all... what you've been going through.

I hope you feel better real soon, Linda.

Big, soft Hugs to you,

Susie
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#7 Peggy

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Posted 25 June 2008 - 01:25 PM

I'm so sorry you are having to go through this! You have had so much to deal with lately and having finally gotten great news with your disability ruling you can't even enjoy it. I was on prednisone at the beginning of my diagnosis and it didn't settle with me at all. I was up all night and not able to sleep and told my doctor I wasn't going to take it. Just on Monday both the sclero doctor and the neuro doctor wanted to try it again being the IVIG didn't work and I told them both no.

I really hope you start to feeling better. There is nothing worse than feeling like you do and not getting any relief.

Warm hugs to you!

Peggy

#8 YFChoice

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Posted 25 June 2008 - 01:38 PM

Been on prednisone for over 10 years. Tried getting off of prednisone for over 10 years. Can't do it. I'm on 5mg now, which is as low as I can go and my rheumatologist says (and I agree) is acceptable. My understanding is, that after so many years, my body is incapable of resuming it's production of cortisol. So be it.

It's all about quality of life.

Hang in there Tru.
~ You have to think anyway.....you might as well think big

#9 Purr

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Posted 25 June 2008 - 02:02 PM

I'm taking prednisone for the MCTD. I'm on my way back down to 5 mg again for the 3rd time. The problem is my polymyositis. After about 1 month on 5 mg my shoulder and arm muscles/joints start getting painful again, so the doctor takes me back up to 10mg for a week and then 7.5 mg. Maybe the 3rd time will be the charm!!!

Christy
Love makes the world go around!

#10 summer

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Posted 25 June 2008 - 11:18 PM

I was on Prednisolone 6 months ago and managed to get off it completely without any side effects. I took it very slow though and could only manage to taper off 0.5mg every week. I have been off it now completely for 6 months and the pain/stiffness has come back with a vengeance :( .

Take care
Celia

#11 georgette

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Posted 26 June 2008 - 12:13 AM

oh truman I am so sorry for you that sounds like a horrible trip -- so so sorry for you hugs georgette

#12 truman

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Posted 26 June 2008 - 12:20 AM

Celia:

It's literally been like night and day since yesterday. Was so very sick yesterday and today after taking the Prednisone, I "normal" again. What a feeling. I do hope to eventually come off it, but what a relief. I was up until 3 am last night because it was so painful to lay on the rash which covered my entire torso, back, thighs and upper arms yet I woke up to my "normal" skin this morning and all pain is gone. I'm not sure if it was the Prednisone or Potassium which actually started working late yesterday when I was able to gather my thoughts again.
Tru

It is what it is...........

#13 Karenlee

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Posted 26 June 2008 - 12:47 AM

Tru,

Glad to hear you are feeling releif today. I too know the double edged sword of Prednisone. (I had a wild allergic reaction to it and stopped after a week), but that week I felt 16 again and could do back flips. Then as soon as I went off, back to being rickety and stiff.

So, yes I'm glad it brought you releif. I hate to hear it when you aren't feeling well.

Karen

#14 Bird Lady

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Posted 26 June 2008 - 10:55 AM

Hi Truman, Sounds to me like they pulled you off Prednisone too fast. When I came off the doctor brought me down at 2-1/2 mg increments per week. I didn't have any side effects. Of course now I'm back on it but only 5mg which seems to be enough to keep my aches and pains at a bearable level. If you come off it again make sure they do it very slowly. Good luck, Birdman
Hugs for All,

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#15 CraigR

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Posted 26 June 2008 - 11:44 AM

When I had my "mystery inflammation condition" (no one could figure out what caused it) several years ago, I took that taper pack that starts with 60 mg. and goes down by 10mg. each day. Felt great until I got down to 30 mg, at which I no longer had the energy to sit in a chair. I then had to taper very slowly - at most 5 mg. each week until the condition abated. Very mysterious. Hard to judge just how long it takes for the problem to improve. I spent a long time (few months) at 5 mg before going off completely. The lesson I got was to taper very slowly, and be sure you feel okay before going any lower.

This is (yet another...) area where you often can't trust the doctors, and must take over.

When I spent time last year in a rest home due to a blood clot in my leg (extremely painful!), I was on high doses of a narcotic pain reliever. When I left, the doctor cut the dosage in half- much too fast a taper! Fortunately, I had extra medication so I could taper much more gradually. I had no trouble tapering off the medication (my way!) - in spite of a silly doctor who thought I would become an addict.

Craig