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effects of getting off prednisone

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Posted 8/29/2013 9:07 PM (GMT -8)
I've been on prednisone about a year this time. Highest dose was 60mg, lowest so far is 12mg. I began Cellcept about 5 months ago, so now Dr. says I can begin getting off prednisone. Sunday I went from 12.5 to 12. The last few days I've noticed I have developed a tremor. I noticed it first in my hands, but now I feel it all over. Its very slight, but if you hold my hand you feel the movement. Today along with the tremor/vibration, I've had a headache and been so unfocused and confused. I really couldn't work. Several times I thought I would burst into tears (over nothing). I sweat and sweat and sweat in a 68 degree house. I feel my heart racing at times. Tonight I notice a sort of tingling on the soles of my feet. I was afraid the tremor was due to the Cellcept, but my dr. said its due to the fact I've been of the prednisone so long, and that it will go away when I'm off completely. I've never had a tremor before, and I've had countless rounds of prednisone.

Has anyone had any of these symptoms? Did they go away? How long did it take?
Posted 8/30/2013 12:58 AM (GMT -8)
Hi  you've been on the Cellcept 5months, could it be that rather than the prednisone as dropping from 12.5 to 12 isn't really a big drop I've been on prednisone about 30-35 yrs. constant with varying doses and while I have Huge Damage from that and now can Never stop taking it I haven't had tremors /headache etc. even when dropping doses,

I have gone from high to lower doses over a week or so and the racing heart rate and teariness I have had on occasion  

while it Could be the culprit But I would not Dismiss the Cellcept either as that's a new drug for you

Best thing is to call your Local Doctor or Rheumatologist  ASAP you really don't want to mess around with tremors & Headaches and if it gets worse go to the ER Local Hospital Better to be checked out than Sorry Latter

Posted 8/30/2013 2:17 PM (GMT -8)
I clarified with my rheumatologist today. He says this is due to the fact I've been on prednisone a long time, not because I dropped 1/2 mg. last week.

Has anyone has long term effects of prednisone like this?
Did they ever go away?
Posted 8/30/2013 10:44 PM (GMT -8)
I have been on it since early march. I started at 60mg and have been all over the board with it depending on my flare ups. I was on 30mg for the longest period but am currently down to 10mg.

I too had the shakes and was very weepy on the lower dosages as I was tapering off of it and was told that this was normal. I was only able to go completely off of it for a week before I had a really bad flare up.

I hope you are able to taper off the rest of the way. -Don
Posted 9/4/2013 3:05 PM (GMT -8)
Hi Quilting,

It took me months and months to get off prednisone. I dropped 1/2 mg every 3 weeks and some drops took longer. I think for me 10 to 9.5 was very hard and dropping from 5 mg was really difficult. I was told to take it very slowly. I had also been on pred for over 5 years so long time. The trick was do the drop and then hold on for 3 days if too hard go up one day and down the next. So for you alternatate days drop the .5 mg. Do this for 3 weeks and then drop the .5 completely.

It was a really long slow process, lots of pain, but I was determined and now I feel fantastic. I think its worth it if you can mamage it. You need pain killers to help with the increase in  pain and drink lots of water.

I remember all sorts of wierd symptoms, I think your body finds it very hard to start making the cortisone again naturally but it will get there.

Good luck. Golitho turn

Posted 10/6/2013 1:28 PM (GMT -8)
Hello Quilting and others, I'm new to this forum.

I was on large doses of Prednisone (starting at 80mg) for a year and half and when I was down to about 10mg I quit my doctor and weened myself off. I was in severe pain for 4 months before that, which made me think it was the Prednisone itself. I was being poisoned. So when I got down to 3mg I stopped taking it. Maybe I cut my nose off to spite my face (as my mother used to say), but by taking Advil at night when I go to bed and maybe a couple during the day, I manage the pain. I am determined to stay off ALL meds and when I can, I just take the 2 Advil at night. Okay, now I'll tell you that sometimes I can hardly walk or lift even a cup of tea without pain. So....my sister bought me a book called The Anti-inflammatory Diet and I think by following the writer's advice, a lot of this medication can be thrown in the waste bin. America....let's think this one out. Let's cut down on the meds. Go through a little pain sometimes. Eat well. Exercise. Stay away from stress as well as you can. I know what you're thinking. Preachy. But heal thyself.
That being said, I am 73, been around the block, and I refuse to spend the rest of my life in pain. Here's the new me.... tongue

Post Edited (Queen of Everything) : 10/6/2013 3:31:09 PM (GMT-6)

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