after 7.5 years i have at last arrived at zero, my first mention is to all the people who have given me help and advise..i cannot thank you enough, yor help and knowledge has been an inspiration. any new sufferers withthis horrible painfull illness dont give up on this forum, i have asked many questions and read other suffers problems we have all helped each other,
i had 2 or 3 flares along the way, and at these times i have thought i am never going to get better, but i am all ok now but still taking care of what i do. also when i got down to 2mg on the program slow nearly stop instead of doing 1 week at old and new . i did 2 weeks then i dropped again did that for 2 weeks and so on.
so good luck to all i will still be on this forum keeping up with all the stories
all yje best pauline xxxx
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pollyg263
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Well done! It can be done but very, very slowly is the answer, I was halving and quartering tablets towards the end. I’ve been free for almost 8 years, in spite of dealing with my mother’s death, clearing/selling her house and my having a breast cancer operation and treatment a total knee replacement and having developed suspected epilepsy/cavernoma with no driving for a year, in that time. None of those traumas have caused a flare up🙏🏼
Congratulations polly263 welcome to club zero, if you’re anything like I was I didn’t even go on holidays without taking some “spare” pred with me but never needed. It was 3yrs 3months before I could join the zero club. I am coming up for 2 years now in March pred free so sending lots of good luck for your new journey in club zero. Mine was GCA only, thankfully not PMR as well.
I think it will be really interesting to hear how you get on for the next few months, I stopped pred in July and had a few rough months as my body adjusted, it helped that I had read here that someone had stopped and it had taken a year for her body to get back to 'normal'. In hindsight I would have stayed on a very low dose for a couple of months more but I felt that when I got down to 1mg it was such a low dose it couldn't be making that much difference so carried on down although was a bit achy. I think its really important that those who come off the pred keep in touh on this forum as theres seems little about the first year off pred and hopefully free of pmr
Super congrats and well done. Thanks for the inspiration. I’ve only been at it 9 mos and had several flare ups over the holidays. I see the light at the end of the tunnel, tho!
Hello to all! I am with PMR for 3 years. After a few flares and having been on methotrexate at one time and Actemra fusions for another - I am now feeling much better and am down from 8 mg to 1 mg pred. I feel like I could quit very soon as all PMR symptoms are gone. I do want to tell you of a medication that my New Rheumie put me on a few months ago. I do credit this med for allowing me to taper off steroids as before this I could not get below 8mg pred. It is called hydroxychloroquinine and it is first and foremost purpose is to prevent and treat malaria. But I have read that it is also used as a steroid sparing agent. Now I’m not sure if my PMR has run its course or this drug was responsible but the horrendous symptoms have abated and I feel human again. Has anyone else had experience with this drug?
Welcome to the club! it's a fantastic feeling, and one you will smile at ever after. Keep up the good work and don't overdo things - it can take much time before you are fully 'over' it all.
That is brilliant news. So lovely to hear that you are now at ZERO. Like you I think Im never going to be free of this painful disease, but you have given me courage and I am trying to think positive I can do this as well. I am currently at 7mg. Keep well Polly and good luck.
Well done and along with that you have brought forward words from others who have quit successfully, thats what we all need to hear more often, wishing you a long and happy recovered life.
It took me 7 years and I have been really well for many years now. The last 1mg was the hardest with awful anxiety and tiredness but like you I got there in the end with the greatest help and advice from this forum. You can recover completely!!
Well done, perhaps there is hope for me after all as my prednisolone is going up again, it didn't seem like a flare no repeat of the usual symptoms, but I've had a long-term cough and am now developing a cold. My anniversary of starting was in December 2019 so I'm six years and counting. So much else is currently going on with me so I should make allowances. But I am so pleased to hear your news.
That is so wonderful , congratulations !!!! I was diagnosed almost 4 years ago with PMR/GCA . I am down to 2 mg and slowly doing the 1.5 mg . It's so exciting and I just want to throw all the drugs out, but I do know that would be disastrous, so I am plodding along . Hopefully sometime this year I can join you on the "zero club" I hope all goes well with you 🙏🏼🌹🌹💕💕🇦🇺🙏🏼
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Tired and stiff with a normal ESR
Does GCA ever go away??
Hurrah- at Zero!
