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still trying to get off prednisone

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Posted 3/29/2012 11:03 PM (GMT 0)
OK I just dropped to 3.5mg today, can I do it?

I'm thinking am I being too hasty? I'm only just holding it together on 4mg! Anyway figure I can only try, right?

Working so much lately I'm hardly able to post, I tried a huge post last week only to see it disappear, don't you hate that?

Hope you're all hanging in there.

My body feels awful, wrists have gone and last night I couldn't get to sleep because of my thumbs. Haven't had my thumbs hurt before. I figure the pain shouldn't get worse right? I mean how much help can 4mg of prednisone be doing?

Am I mad?

Shows where my brains at. In a confused state of prednisone withdrawal, I really want off this med, I just keep thinking I must be over the worst of it.

Anyway, hope to hear some replies soon, how was it for you getting off the dreaded pred?

Best wishes, golitho tongue

 

Posted 3/29/2012 11:40 PM (GMT 0)
 Oh Golitho..gentle hugs to you my friend. I have been off of the pred for a few weeks now, and I have to say I am pretty miserable with only the MTX to fall back on.  I work overnight shifts and without my pred as a crutch, I finally had to wave the white flag and tell my employer that I have RA, and that I cannot work the schedule I have been given.  I feel that I have once again been defeated by RA mad   I worked it for many months eating pred like they were skittles and now I am just in pain and plain depressed. It is a sad state of affairs.  My house is a disaster, I'm exhausted and not sure what I will be doing for work after this month. This has been my life without pred..the only good thing? I'm not eating like a maniac anymore! Waiting for my TB test results so that I can start on the Enbrel again. Hopefully that will help.

I'm so sorry you are struggling, I *know* how difficult this is!! I'm sorry to be such a downer, and wish so much that I had a happy story to tell of getting off of pred smilewinkgrin

I hope others have more positive stories to share.

Posted 3/30/2012 3:24 PM (GMT 0)
Many well wishes to you Golitho...hope you can get off the pred....
Hang in there as it'll hopefully get better for you soon....
keep us posted, thinking of you and sending positive thoughts to you...
Posted 3/31/2012 1:10 AM (GMT 0)
Oh Go- not sure you should drop if you're feeling so awful. When was your last drop? At least a month ago?
Sorry you are having a time of it- what does your dr. say?

I continue to have fatigue more than I'm used to but pain & stiffness do not seem to be exceeding anymore so I am going to stop worrying about an oncoming flare.

Keep us posted.
Posted 3/31/2012 8:35 PM (GMT 0)
Hi, Sweetie!

I was off of prednisone for two whole days, then I flared so much I couldn't open my med bottles and I couldn't walk because of my right knee.  So, I am backon 10 mgs.  If I get down to 5 mg, I will be happy...for now, 10 mg it is. Hope you are feeling better.

V

Posted 4/2/2012 9:00 AM (GMT 0)
 

You are braver than I am Golitho especially since you work away from home.  I went down to 4.5mgs and that little bit of difference from 5.0mgs. was unbelieveable.  The pain was definitely much more.  I would like to get off of it but not now.  Maybe sometime in the summer.  I remember seeing another Lady who was on another RA forum and was doing low dose Pred. for 25 years.  I was amazed. Seems she wasn't affected by it much since it was low dose.  Could we all be that lucky?  I just hate anyone being in pain especially severe pain.  Good luck to you, either way.   

Posted 4/2/2012 10:57 AM (GMT 0)
Golitho,

I was diagnosed with Polymyalgia Rheumatica in '09 after having bilateral knee replacement. Actually, there was much discussion as to whether I had PMR or RA, but prednisone was the treatment either way. I did not want to do methaltruxate, and battled my rheumatologist regularly about that. At any rate, I was in very bad shape initially and started on 20 mg. daily. I responded well, with no side effects. I gradually began cutting the dosage as prescribed by my doctor, but each cut was painful at first. Each cut of 1 or even .5 mg was very noticeable. I took nearly 3 years to finally become prednisone free, but I am now 60 years old and more active than I have been in a very long time. The assumption now is that I had PMR since it seems to have been temporary. Hopefully I never have to deal with it again, but the prednisone was truly a miracle drug for me. I truly hope that you have similar results.

Posted 4/23/2012 7:21 PM (GMT 0)
golitho how are you doing now with prednisone. I'm day 6 off of prednisone so I know it can be done. I went down .5mg every 5 to 6 days. They days I dropped .5 for next 2 days after would feel like crap like a flare but I just pushed through it because I had read somewhere that is what weaning from prednisone does. I wasn't sure if ti was the RA causing the issues coming back or the prednisone. Frankly I didn't care because after being on it for 7 months I was determined to get off. I did it! And now a week after I have my ups and down like just like when I was still using prednisone so I'm glad I came off. Hope you are succeeding also.
Posted 4/24/2012 12:56 AM (GMT 0)
congrats I will get better!! That is wonderful news for you.  I've been off of it for a good bit of time and there are days when I wish I still had it to fall back on, but like you glad I finally forged ahead and got off of the pred merry-go-round.
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