Zero Prednisone Discussion

I have been suffering for 3 and a half years and am taking 4 mg. My rheumatologist wants me completely off but I cannot get out of bed and I feel so exhausted from pain lack of sleep lack of exercise. I am so depressed and dnr know what to do. How long did it take those who are in remission to get there. I am in the US and have not been able to find any support group here. No one has ever heard of PMR not eve some doctors that I have gone to.

Lora

I have fully recovered from PMR - there is hope after all

I just wanted to let everyone know that after five and a half years I have eventually made a full recovery from PMR.  This forum was the most helpful part of my journey - the encouragement, shared knowledge and advice (especially on reducing prednisone dosage) was a lifesaver. I even introduced my GP to this site. Thank you sincerely, fellow sufferers.

?I was diagnosed at age 58 and seemed to get it rather severely but now it has gone without a trace,  I haven't lost any muscle strength, and my energy levels are back to normal.

?My PMR began suddenly one month after my mother died of cancer ( I cared for her at home while working full time and also looking after my husband who had torn his quadriceps tendons from his kneecap and was on crutches). My mother died in January, I had a flu jab in the first week of February, and in the second week of February I found one morning that I couldn't get out of bed without help.  What caused the PMR? Take your pick!  Both stress and flu vaccination together would be  my guess, but there's no way of knowing.

?For those of you who are having trouble reducing prednisone, don't despair!  I always took as low a dose as I could bear - always lived with a fair amount of pain because I was conscious of the side effects of the drugs. Halfway through I got stuck on 10 mg and thought I would be on it for life, but then slowly I reduced until I got stuck on 4 mg for about 3 months.  After that I reduced slowly, slowly as advised in this forum until after 5 years I could feel the PMR starting to let go of its stranglehold. 

?At the end I was actually taking half a mg every second day - nibbling a bit off a 1 mg tablet and saving the remainder for two days later.  After a fortnight I thought it was too ridiculous for words, so I stopped taking any medication.  Believe it or not, the rotten PMR flared up quite severely as if it was saying 'Hey - I was using that!'  I refused to go back onto prednisone because I'd have had to take a higher dose, so I persevered with the pain until it eventually dissipated and I returned to my old self.  I still can't do a full leg squat, but maybe that's old age working against me at 65!!

?It's a wonderful thing to be able to do the things that I couldn't do for 5 years.  I can use my heavy cast iron casserole dish because I can actually lift it out of the cupboard now.  I can wear a t-shirt because I know I can get it off by myself.  I can try  on new outfits  and new bras without help, and I can dry myself properly after a shower because I can swing my arms above my head.  No longer do I have to fall onto the bed after work to have a nanna nap, and I can enjoy a brisk walk and even my bicycle is getting used again.

?The only advice I can give to anyone who is newly diagnosed is don't push yourself to do stuff that you used to do.  You need to rest, accept your limitations, and look after yourself.   After years of swimming through treacle, there is light at the end of the tunnel.Report this

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I am on zero for 11 days so far and my lab results are fine.

It took me 8 months to go from 3 mg to zero, because I listened to this fabulous group and my body and not my rheum.

Thanks to everyone for there wonderful help and their story they had shared!! 

Hi Folks - Don't get on the forum as much as I used to be.  Have just celebrated my first year off pred.  It took a few months to get the effects out of the system but we are feeling very much better.  The longest effect was muscle wastage - it's a slow process to get them back to some sort of fitness, I had to make some targets and I'm glad to say by and large I have kept to them, I walk around 5 miles a day come all weather, sometimes it has been a battle but it well worth it. Don't give up you will get there!

I have after 4 years on Preds now reached zero too. 01st Jan 2018 zero preds! Now I'm working hard to lose all the excess weight gained and I'm hoping my high blood pressure will also drop once the weight drops. Still a bit stiff when I get up from sitting down too long but that goes after about 30 seconds. Over Christmas I did have to up my preds to 5mgs for 8 days due to a unbelievable pain in my right hip....that cleared up, was sent for an x-ray but it's currently fine. I knew it wasn't PMR pain so was happy to continue with my zero goal. Like you all I'm hoping that my PMR journey will have come to a permanent end although like Danrower my Rheumy quite matter of factly said that if it ever does come back and you catch it soon enough a very very low dose of preds may be all that's needed to keep it in check. I have had so much support from this group especially in relation to the dead slow and almost stop method which I truly believe is the way to keep on top of the condition. Luckily my Rhumy was happy with the method and sees preds and naughty friends that always need a close watch as opposed to enemies to avoid. Good luck everyone, regards, Tina.