Posted , 7 users are following.
After being of prednisone for 4 weeks my shoulders pain start over
I have been on prednisone for 2 years ,I'm almost 70 years old should I start tacking the prednisone.again like maybe 1ml. So tired of pain and stress wandering if it's coming back ,I'm trying essential oil for pain peperment any body ever tried
0 likes, 12 replies
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EileenH danielle62164
Posted
You wouldn't be the first person to have stopped 1mg/day of pred and found the PMR had been controlled by it so within a few weeks or months it was back. There are doctors who say it can't possibly be doing anything - experience shows us otherwise. Only about a quarter of people get off pred in 2 years - so I think it is fairly likely your PMR wasn't as burnt out as you thought, and especially if you have been under stress.
None of us have found anything other than pred works for the pain - so no, I doubt oil of peppermint will do much more than make your pain smell nice.
danielle62164 EileenH
Posted
Thank you
it's no easy and I don't like those prednisone
but pain is not better
EileenH danielle62164
Posted
No-one LIKES being on pred but I think it beats the alternative. At the present time the only way of managing PMR pain successfully is using pred. That's just the way it is.
It is also not a case of pred is bad, no pred is good. PMR causes inflammation in your body - leave it unmanaged and it puts you at a higher risk of developing cardiovascular disease and peripheral vascular disease and even some cancers. If you decide to put up with the pain you will probably put on weight because you are immobile, being immobile puts you at greater risk of osteoporosis. You will be in constant pain and that makes you depressed and makes you comfort eat which doesn't help your weight. The constant pain makes you bad tempered and unable to join in things you want to do - and you lose friends and become isolated. If you are really bad you get to a stage where you cannot do things for yourself - I could barely toilet myself or get up from the toilet. I couldn't have a bath because I couldn't get out without help. I could barely dress myself, fastening my bra was next to impossible. I crawled up the stairs on hands and knees and had to do any household tasks I could do in small chunks.
The day I took my first 15mg of pred, 6 hours later I walked downstairs and back up again normally. The pain was almost gone. Some took a few months to go - but I had had it for 5 years without pred, not out of choice, it wasn't diagnosed. Nothing would persuade me to go back there. I lost most of my 50s to PMR - not losing any more.
iellen32 danielle62164
Posted
Wish it works for you!
Stay well,
iellen
tina-uk_cwall danielle62164
Posted
hello Danielle, i think Eileen is right when she says that your PMR is still alive and well. I would be tempted to restart the prednisolone again, because you need to get on top of the inflamation again before it flares up out of control. If you had already reduced to 1mg and experienced no pain then I supose you could start taking that dose again at the very least for a good couple of months. Personally I'd start at 3mgs for 6 weeks them reduce using the dead slow and almost stop method but by reducing only by .5 each time then when I got back down to 1mg stay on that dose for agood couple of months before reducing by .5 to .5 and then i'd stay on that dose again for a good couple of months before attempting the final reduction to Zero. All the best. Tina.
danielle62164 tina-uk_cwall
Posted
Thank you
i thing your right ,
I will go back on the prednisone ,
I don't like it but I don't like the pain
Charko danielle62164
Posted
Like others here before me I recommend you go back on Pred - I know it is discouraging but I don't think there is anything else out there at this time and with this upbeat forum you can gain your confidence back and know you are one of us! I am holding at 2 mgs now, have been for about a year, sometimes going up to 3 and then back down to 2. I have been on Pred for 4 years now and I never cease to hurt but the pain is tolerable. My shoulders, arms, wrists and hands are getting weaker despite my exercises. I am 74 and lead a hiking group and I manage to continue my walks, though not the strenuous ones anymore. Tiredness is my bane. Pred is a miracle drug and has been around since the '40's. It's tried and true. Keep us posted and moan and groan as much as you want, just try not to be scared - which I get sometimes.
danielle62164 Charko
Posted
Hi,
I'm happy for you life is no fun with pain
when back on prednisone 1ml a couple days ago
but i see I'll have to go back up
my shoulders my wrists my arms Ext.everything hurt
tomorrow I will go up to 3ml and hope my pain will go away
thank you
Anhaga danielle62164
Posted
My doctor right at the beginning said that she has patients who keep a supply of 1 mg tablets on hand specifically to deal with this sort of thing, the gradual return of PMR symptoms. They just take the medication when they feel they need to, to keep on top of things, and gradually over time the need becomes less and less and eventually they don't need it at all. I think you could try that after you've got the inflammation under control again and tapered slowly down to what you hope will be zero again. You might only need it every few days for a while, who knows? Let your body tell you.
danielle62164 Anhaga
Posted
ricky23486 danielle62164
Posted
(At age 67) I tapered off of Prednisone after 2 years. 3 weeks later I was waking in the night from pain and in the daytime dragging myself around again miserable with painful shoulders and hips feeling a total failure. With the encouragement of this forum I went back on to Prednisone (rheumy said 10mg) 5 days ago and - I am human once again! Meantime I bought Kate Gilbert's book PMR and GCA A Survival Guide and couldn't put it down - it gives so much insight. Danielle - you wonder if it's coming back - but it sounds like it never left -
EileenH ricky23486
Posted
" dragging myself around again miserable with painful shoulders and hips feeling a total failure"
Don't ever feel a failure for not being able to get on without pred - it isn't your fault and there is very little, nothing really, that you can do about it. PMR comes when it wants and it will go when it wants. The best rheumy in the world can't change that whatever they may claim.
Someone said recently their doctor said "they'd" always got patients off pred in 2 years - rubbish, and when they did, it was coincidence and othing to do with their skills. Although the ones who allow patients to reduce in small steps and slowly are more likely to get their patients off pred without repeated flares.