I'm not sure what has happened but I have not received any notifications for a long time now. I am over 6 months off prednisolone and feel that life is getting back to normal. I have lost almost 1.5 st and some of what I would think may have been withdrawals have gone. Carbs no longer cause me the same weight issue but I am eating less of them. I thought I would check in to give some hope to those who may be struggling as I was there too and was on pred for over 4 years. I have had some stress in my life since coming off but my body seems to be coping with no return of PMR to date.
Thank you for posting this. Its so encouraging to hear. I am 2years in and stuck at 9mg for ages, trying to control weight and blood sugar! Its certainly good to know there’s hope. Best wishes for the future. Stay well.
That is fantastic news, you must be so pleased about it. Hope the PMR stays in its burrow!
congrats, thank you for posting, you give me hope. best wishes on your pred and pmr free journey.
Well done and thanks for sharing. It is lovely to hear encouraging news. I would be interested to hear if you think you may have cut your carbs enough to explain your weight loss or if it is just the ditching of Pred.
So happy for you. Sounds so encouraging. I am 75 years old and was diagnosed with PMR over 2 years ago and have been at 5 mg for several months.My latest symptoms are extreme fatigue and shortness of breath.I live in Canada and am starting to wonder if I really have Lyme disease because of the lingering symptoms of fatigue but not much joint pain. If anyone has insight on this I would appreciate feedback. Thank you all
congrats silver! it must feel Sooo liberating to be out of this quagmire of pmr and prednisone! I Really needed to hear this today. a bit of hope and encouragement!
I’d managed to wean down to 3.5mg till Yesterday! but I’ve been experiencing so much pain in my shoulders, knees, and fingers…that yesterday I “caved”, and took another 5mg. it definitely helped. today I went down by 1mg, and hope to go down each day, “Again”!
anyway, good for you! I’m so happy to hear of your positive outcome!
btw…Lynda again. how long did it take for you to start dropping some weight?
PMR doesn’t typically have joint pain - fatigue at 5mg is not unusual.
Check your settings to see if notifications is checked.
Glad things going well for you. I’m at .5 mg but feeling niggles, going to hang in for a couple more weeks and see whether things improve or not.
Have you posted here as well?
thats brilliant thank you for sharing, you have given me hope i am tapering to 2 1/2 mg and have pains around the top of my legs I think its probably withdraw from the pred . It is so nice to hear that someone has actually managed to get off the pred and getting back to normal
thats brilliant thank you for sharing, you have given me hope i am tapering to 2 1/2 mg and have pains around the top of my legs I think its probably withdraw from the pred . It is so nice to hear that someone has actually managed to get off the pred and getting back to normal
Hi Silver49,
Your email address was showing as blocked in our system so I have removed the report. This means you should start receiving emails again although they may go to your spam/junk folder.
Regards,
Alan
Hi Eileen
I am glad you mentioned fatigue, i am on 5mgs of Pred, and for the first time for a long time, I’ve been feeling fatigue, and feeling sleepy often, and very low energy level. I posted recently about my neck, shoulder and upper arm pain, which i am not sure whether it is due to a flare from low dose or nerve trap. Anyway, I still got the shoulder pain, and this time, it seemed to respond to paracetamol for some pain relief. I just wonder, if it responds to pain killer, then it is less likely to be a flare, so I shouldn’t put my Pred up. But the fatigue is there, shall I increase the dosage a bit, or just bear it . ? It’s never a straight forward journey with PMR? Thank you for your advice.
Glad you are PMR-free at last. Many just ride off to sunset and never let us know, so thanks for coming back to visit.
I really sympathise with you over the fatigue. I could hardly move my arms I was so tired. The trouble is if you increase the pred too much you have to go through the whole thing again when you reduce. I did increase it a bit so I was not too shattered.
If paracetamol helps I wouldn’t put the pred back up - because it is only a low dose of pred that prods adrenal function back to life. It is something you have to go through at some point - but one top PMR doc likes to keep his patients at 5mg for up to 9 months before continuing the reduction. It seems to work to get over that hump.
I am unable to complete a reply without it disappearing, so briefly. Weight loss is partly cutting carbs and partly no longer on steroids. I did have a spell of being uncertain about coming off as I had similar pains to the ones I had with PMR and thought it had either not left or had returned. I was very tempted to go back on a low dose but stuck it out and came through the pains. I think it was withdrawal and I had other physical problems which I also put down to withdrawal. GP was very good and ran a number of blood tests and ultrasound which came back negative bar one which I think is due to the weight gain so now on a steady loss and will see him again in May. It is not an unduly concerning result. My sleep pattern has taken months to settle but now it has my energy levels have returned to what I can expect for my age. I sometimes surprise myself with how much I do achieve. Thank you all for your kind words and I shall pop back from time to time to update. I wish you all a downward journey with the steroids and hope that, like me, you can be steroid free.