Pain

I can relate to all of those things written by many members.

I am worried about the Prednisone,so many things it can do to the body but

I haven't been able to figure out how to live without it.

I do best only cutting down 1mg at a time, when I dropped from 10mg to 5mg,

I was back where I started in three days.

I have not had a lot of rib pain but neck, shoulders, and arms plus bottom legs and feet and heels of hands.

25 Replies

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  • Have you seen this reduction plan? healthunlocked.com/pmrgcauk...

    Because you introduce the new dose slowly you're much less likely to have withdrawal symptoms, and it also makes it easier to determine exactly what is the lowest possible dose you can manage on for now. Takes a month to six weeks for each reduction but more likely to be successful than dropping the dose all at once overnight and having to deal with withdrawal pain.

  • You are at a low dose, less corticosteroid than your body makes naturally each day and which is essential for life. Once you are below about 8mg your body starts to make its own corticosteroid again, above that it goes on holiday. So being on 5mg is no big deal.

    You might find this article comforting:

    practicalpainmanagement.com...

    As long as the underlying cause of the PMR is active you will need some pred. No-one can tell you how much, everyone is different. That's why you find how how much less pain you can have with the starting dose and then you lower, SLOWLY and in small steps, to find the lowest dose that gives the same result. Do it carefully and you will get considerably lower than you are now. Maybe not immediately - you will get there sometime though.

  • PP , thanks for this link, good to see some positive feedback regarding prednisone. Also, words for the wise, need to stay in touch with cataract risks. 🙏🏼

  • Hi Purplecrow.

    You've heard it all before: take your vitamins, eat a wide variety of healthy foods, stay away from empty carbs, exercise to maintain flexibility first and slowly rebuild strength, get enough rest, try not to worry.

    As for cataracts, if they develop you'll likely see them before the doctor does, but get your eyes examined every year. If they develop, don't be afraid. The operation is less than 20 minutes for each eye, virtually painless, and recovery is in days. Results are within hours. If you have the operation in the morning, you'll be seeing like you were 20 years old by lunch. It's miraculous and nothing to be afraid of. Far better than the damage done by unchecked PMR.

  • And to add to GG's post - I've been on pred for over 8 years and have no sign at all of cataracts of any sort, pred-induced or otherwise. Much to my disgust! I'd welcome cataracts: having them removed and lens implants would mean I could dispense with distance specs - and the permanent red pressure spots on my nose!!!! Plus I could spend 25 euros on sunglasses not more like 350 euros!!!

  • Thank you for these kind words, this is my next challenge.

    Im getting weary of the dreary news. Any happy thoughts out there???

  • I crossed something off my bucket list a few days ago. I didn't even realize I had a bucket list until the galaxy in Andromeda was pointed out to me when we went stargazing in Ontario, where we could have a good view of the Milky Way. Not as good as the skies of my childhood but more amazing than anything I've seen for decades. As long as the stars are there, what's there to worry about?

  • Looking at the universe is always exciting and humbling. My bucket list has proper northern lights on it. Missed out a couple of times but there's always Hope!!

  • They are so unreliable - and when they get far enough south to be seen from home: it rains...

  • When I was in my teens there was a display of Northern lights over our small town in Nova Scotia. It was not multi-coloured, all green, but great sheets of light moved and swirled over the entire sky. It was extraordinary. My father and I stood out there watching for a long time. Since then maybe three or four times I've caught glimpses of lights with more colours, but always just a little shimmer low in the Northern sky. It's different living in a city.

  • Sounds great. I was travelling round North America by greyhound in the 80s....slept on journey overnight..in the morning driver said lights had been great. I was fuming lol. I have alert on app when solar flares occur but weather not cooperated. I think best ones with be in 5 years or so when 8 year sun flare cycle comes round. Fingers crossed.

  • I tried to figure out what year the lights were that I saw, but as far as I can tell the sun was actually not in an active phase during the time we lived in that particular house, so, you never know....

  • Saw them earlier this month on a short trip to Iceland, fantastic, green only but well worth the trip as was the rest of the visit,black beaches, geysers and waterfalls.

  • Christmas is coming...

  • I received good news this week at doctor’s appointment: my A1C level dropped from 6.5 to 6.0. That low carb/no sugar diet you all suggested I follow did the job! Thank you so much!

  • Result!!!!!!!

  • I was thrilled! On the summary report my doc gives me as I’m leaving, she had written a ‘Congratulations. So proud of the work you are doing,”. I felt like I was six and had gotten my first gold star on homework. You know, I point this success straight back to this forum. I would be lost without you, the other Aunties, Uncles, and members. This forum is such a godsend in information and encouragement! Thanks again! A gold star to all of you!

  • :-) Received with pleasure

  • I was also, and to a certain extent still am, worried about the Prednisone...20mg...soon to start a reduction...worried about that too...ive come around to the fact that without the prednisone, this would be one horrible thing to live with day in and day out...not too many side effects so far...better than the alternative of crappy stiff painful days...now its only crappy stiff and painful mornings!!!

  • Daworm, don't stress about the taper. Your first couple should be okay, and hopefully you won't feel any worse for the reduction. It's when you've been lower for a few days and feel an increase in your symptoms that you need to be careful. It means that your body still needs the amount of pred you had been taking before the latest reduction. Inflammation is still lurking there, ready to flare up. As time goes by the disease activity should lessen and you will slowly be able to reduce the pred some more. Eventually we all hope this activity dies away altogether and we go into remission and can discontinue pred altogether. As PMRpro has said, and words to remember and perhaps say to our doctors: "It isn't slow if it works". Better a little too slow than a little too fast. I can attest to that, having reduced brilliantly but at a real snail's pace for months and months, achieving the minuscule dose of 1.5, then throwing the progress away in a sudden mad dash to 1, believe it or not 🙄. I seem (I hope) to have settled on 4 for a while. So be optimistic, but careful. 😎

  • thanks for the info, my Dr seems to know about sloooow...I sorta told him I want it to be slow, he said it has to be...so he seems informed about that..from 20 to 17 he wants for three weeks or so, see how it goes, then to 15....ill give it a try!!!....

  • That sounds quite reasonable. But the reduction shouldn't be more than 10% at a time, so even if these first two go well, and I hope they do, you may wish to consider reducing by only 1 or 1.5 mg at a time from 15 mg to 10, and thereafter even slower. Do you have a copy of Dead Slow Nearly Stop at hand?

    healthunlocked.com/pmrgcauk...

  • I do now...we will soon see how it goes..like it says, hard to tell whats caused by prednisone and whats caused by PMR...this will be my first reduction...interesting and I hope it goes well...

  • Um - is that what you meant Heron? Don't you mean "shouldn't be MORE than 10%.." or "should be less than..."? Less than 10% is fine,

  • oops. Have corrected it.

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