Hello everyone. I am on 2 1/2 mg of pred for sometime now i have been getting pains, stiffness and discomfort at the tops of my legs and have trouble walking, When i had my last blood test my bloods was normal so my doctor said that its not polymyalgia so that i thought maybe it was withdrawel from pred the stiffness and discomfort is sometimes only on one side. i have reduced very slowly. can anyone please offer any words of wisdom. Thank you
Forget the "bloods" My blood tests have been normal for the 17 months I have had this curse. Originally, my doctor dismissed my self-diagnosis of PMR, but after much testing could not find anything else that it was. Besides, pred worked! I would go up a few mg of pred for a while, and see if it works, then reduce very slowly. And if your doctor gives you any grief, ask him if he feels your pain.
Are you taking a statin for high cholesterol? I'd been taking atorvastatin for years, but it suddenly started causing PMR symptoms. Prednisone alleviated these symptoms, but stopping atorvastatin or switching to Crestor would have been the better "treatment."
It could just be your body getting used to the low dose - I have friends who are entirely off pred who say it was a good year before the stopped feeling stiff. But does a little bit more help? When it is one-sided, could it be trochanteric bursitis? Sometimes blood markers don't go up when you are still on some pred, even if it isn't quite enough to keep symptoms under control. No-one knows why, it is just so. As Carnut says - not the GP's pain ...
hi, go back and insist it's taken seriously, I got down to a low dose with no inflammation markers and got fobbed off with the bursitis diagnosis, eventually after insisting to see a different rheumatologist I had an MRI of my hips and pelvis , this led to an urgent ortheopedic referral, of which it was found out that the prednisolone had caused avascular necrosis and have had to have both hips replaced , of which they all say now I couldn't of had polymialgia, upshot is having had 2nd hip done last November I am now pain free of those awful pains in groin and can walk properly again, so dont be fobbed off and don't put up with it.
Recently, trying to reduce from 4 mg to 3 1/2, and the second time not able to walk around the block without leg pain, I returned to 4 mgs and was able to walk again.
Jenny rose, I know we are all different but, I would go back too the last dosage level that I was comfort at, stay at that level and slowly reduce at the smallest amount that you can. I have had all like of problems reducing and sometimes have to go a high to get the inflammation under control. Good luck stay positive almost there.🙂
Hi Tracey, how rotten for you but I find comfort in what you say as I also have ended up with avascular necrosis. Annoyingly my doctor didn't act like yours and the hip became infected so had to have the top of the femur removed and am now waiting for the new hip to be fitted. I had the CT scan done in February to design the replacement but now everything is on hold and I am struggling around on crutches with one leg about 2-3 inches shorter than the other. So glad you are able to get around pain free now. You must be really happy to have got things sorted. All the best and stay safe.
thank you. yes i think ill increase the dose to 10 mg for a few days to see if it helps. ill worry about my doctor later
If you have reduced below required maintenance dose ( regardless of the blood test), then some pain will come back. It it is PMR related pain (flare), usually people add +5mg to the existing dose for 5-10 days and then reduce back to just above the current dose. If the hip joint has inflammation, then sometimes rest and icing every 3-4hours will help it recover. One can increase the dose and do treatment to speed up recovery.
I agree with you, Eileen. I am just over 10 months off pred and still get a bit of stiffness but know it's not PMR. I did have some difficulty when I came off altogether recognising the difference but I know now.
Hi. No i am not taking any statins and to be fair i have had the the pain and discomfort for quite a while and it was getting worse. My sister used have a lot of muscle pain when she took statins
Hi. I have had the discomfort for quite a long time but my bloods have been okay so i kept on reducing . I decided to take 10mg yesterday i always take a split dose and i had taken 1 1/2 mg in the morning so i took 8 1/2 before bed and today i feel so much better today almost pain free i used to also get discomfort when i lifted my foot to put socks on and that seems so much better. i am not sure what dose i should go down to , but i will stay at 10mg for a few days
thank you tracey umm my doctor says that if you have inflammation it always shows up in your blood, this cant be right as i feel so much better after taking 10mg. I hope that you are okay now
Hi. I am so glad for you. I feel so much better today after taking more pred yesterday
really sorry to hear you are suffering like this , only problem I have now are my knees , again am being told it's the muscles having not been used, told gp I'm concerned that I have the necrosis in them but again its physio route which with lockdown is impossible.i have an ortheopedic check up in November so will battle on till then. I hope you too stay safe and your op isnt too far away.
You might be able to get virtual advice from a physiotherapist. I know we like personal contact with them because they can actively work on our sore places, but if you need advice concerning appropriate exercise to strengthen weakened muscles they could help with that without seeing you.
My physiotherapist is offering "virtual" appointments but in my case I know what I need are therapeutic massage and low level light therapy, both of which are hands on.
I have to say I'm looking forward to seeing my physiotherapist again nearly as much as my hairdresser!
hi yes I had a phone call from the physio who did listen and said if still an issue in a couple of months after doing all the exercises to get back in touch. which is what I will do , thank you
Hi. oh my you have been through the mill i am so glad that you are now pain free, i seem to be pain free as well .
At what dose did the discomfort arise? Often the blood markers don't rise while someone is still on pred, simply because there isn't enough inflammation for long enough to trigger the liver to produce enough of the protein that contributes to the readings to do so.