i have been taking 15 mg ofpred, for 2 weeks ,then down to12.5 ,I've got ringing in my ears ,hot sweats and headaches .has any one else had any of these symptoms ,
Hello Wendy, sorry to hear of your recent diagnosis. I personally do not suffer from these side effects but I understand that many other sufferers do.
i would like to talk with you about your reduction. The 15mg dose is the standard starting dose for many of us. However, please look up the Bristol pmr plan, because you will see that most Drs would like to keep you on that dose for 6 weeks so that the preds can really do their job. Following that it's down to 12.5 for 6 weeks followed by 10mgs for anything up to a year. I was kept on 10mgs for 6 months.
from 10mgs many of us then like to follow the dead slow and almost stop reduction method with many of us only reducing by .5 mg per reduction.
what you definately do not want to do is reduce by too much too quickly. You could end up with a flare, which could see a return of your pmr symptoms as you are not taking enough preds to control the inflamation.
all the best, tina
Don't worry - they are all possible side effects of pred.
However - if the headaches get worse do go back to the doctor and if you get any visual symptoms at all go straight to the doctor or - if you have to wait at all - go to A&E/the ER as that could be a sign of GCA, PMR's big brother. Other symptoms include pain in your jaw when chewing that goes away when you stop, scalp pain or tenderness and sometimes the ear problems you mention. About 1 in 6 patients who have PMR do go on to develop GCA so it is always something to bear in mind.
You'll find links to lots of information in other places here:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Do come back and ask any questions you have. Someone will do their best to answer!
Hi Tina it was the rheumatologist who has set the doses over 6 weeks ,2 weeks on 15 ,two weeks on 12.5 then 2 weeks on 10 .ater that I have got another appointment with her .ive still got pain in my neck and shoulders ,but legs not as stiff as they was
How do they diagnose GCA ,should I go back with the ringing in my ears or wait for it to go
Hello Wendy, I am not medically qualified but the reduction plan you mention is far to much, far to quickly. I think that is proved by the fact that you are still complaining of pain in your neck and shoulders. Many patients even on preds never experience total pain relief however I believe that your continuing pain us due to not getting the initial inflamation under control, and if this us the case I foresee you experiencing a flare. What does your GP say about this course of treatment? Regards, tina
Hi Wendy, I had terrible sweats and still do. Also headaches which I never had before pred, although they were not blinding headaches. I also was ravenously hungry all the time. As others have said you are reducing rather soon, it does seem to be worth taking the reduction slowly in spite of the medical profession wanting us to reduce at the speed of bats out of hell. How are you getting on taking just 12.5mg?
The pains are back in my shoulders and neck but they never went completly when I was on 15 mg .taking pain killers ,
Hi Wendy, my point totally. You have not got the initial inflamation under control yet and you are already reducing.
it is important to get the initially inflamation under control first and that takes time and 3 weeks is simply not nearly long enough.
your rheumatologist is asking you to reduce to 10mgs in 6 weeks when if you look up the Bristol pmr plan you will see that the experts recommend patients stay on the starting dose of 15mgs for 6 weeks.
also, I hope that any additional pain relief that you are taking does not consist of any anti inflammatories, that is ibuprofen. These drugs should not be taken along with prednisolone.
regards, tina
Thanks Tina. I take paraceetamol for the pain. I've go my appointment on 2nd November to see my rheumatologist. Will take it from there .I work as a cashier on the checkouts , this doesn't help .
Look up the Bristol pmr plan, that way you will go with plenty of information. Information is power. You will hear of Many stories on this forum of patients being given the most inappropriate treatment plans that if followed would not only prove totally inadequate but could prolong a condition that is not curable and really needs to be managed sensitivity to keep under control. All the best, tina
I will Tina and thanks
Hi Wendy, the steroids should be sufficient for the pain, they really are a wonder drug, but they do need to get the inflammation under control before you start to reduce. If you are having shoulder pain I should phone up your GP and ask if you can go back to 15mg until the pain is sorted out. Particularly as you are having to work. A lot of doctors do not seem to know that much about PMR.
I was diagnosed 2 weeks ago tomorrow. I was put on 20mg of pred and will be on that dose for 4 weeks. Within 24 hours most pain was gone, and after another 12 hours ALL pain was gone. I have been pain FREE since. My dr. plans to reduce to 15mg after the 4 weeks of 20mg....and I am nervous that this is big of a jump. He said he has had good luck with only the first jump....then slower after that. I guess I would let my dr know you are still having pain and try to get that gone or mostly gone before trying to reduce the dosage. So far I have had no side effects....I am diabetic and watch my sugars like a hawk, and so far they are spot on with careful careful eating. So sorry you are having headaches..........good luck to you.
I agree with the others - you are reducing way too quickly. I've only just got under 12.5mg after nearly a year (I started at 50mg), and I'm struggling with pain returning as I reduce, even after this long.
It will take much longer than 3 weeks for the pred to really start working and months, if not years, for you to understand this condition.
I'm really sorry to say but it isn't going to go away quickly and you need to 'manage' the drugs according to your own needs, not necessarily what the Dr tells you.
I had hot sweats really badly for the first 6 months or so, but they have settled down now and I only get them very occassionally now. As the others have said, watch out for the headaches etc because of the possiblility of GCA.
Wendy
Where do you live?
I'm trying to do what consultant told me to do .I think I need to call 📱 her at the hospital and see if I can stay on at least 15mg a while longer .has anyone had weight gain on the tablets, that's somthing else icworry about
This is what the BRS say about reducing. I think most people with PMR think it is over ambitious, but it is what the doctors read:
The British Society for Rheumatology guidelines suggests the following method for titrating the dose of prednisone in people with polymyalgia rheumatica:6
Initial dose – 15 mg, once daily, for three weeks, followed by;
12.5 mg, once daily, for three weeks, followed by;
10 mg, once daily, for four to six weeks, followed by;
A reduction of 1 mg from the daily dose, every four to eight weeks
That sounds, like, a good reduction plan , if it works. And if that is what they, are recommending they must have had good results, from patients
I would definitely give your consultant a call and see if you can stay on 15mg until the inflammation is under control. It should only take a few minutes of her time.
Weight gain can be a side effect with steroids, I try and eat a good diet, I have cut out simple carbs, I have become a nutrition guru since I was diagnosed and bore my friends silly! On the other hand I would prefer weight gain to the awful pain I was in before steroids. Not everyone gains weight and some people even lose weight.