Can anyone please help !!
Posted , 13 users are following.
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
0 likes, 26 replies
Carnut Royall
Edited
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.
Royall Carnut
Edited
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
Boone Royall
Posted
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."
Royall Boone
Posted
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
EileenH Royall
Edited
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 ...
Silver49 EileenH
Edited
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.
Royall EileenH
Posted
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
EileenH Royall
Posted
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.
Royall EileenH
Posted
Hi Eileen I wonder if you can advise me please. I went up to 10mg for a few days and was absolutely fine no pains or stiffness so i dropped down to 5 mg yesterday 3 in the morning and two at night, today though i have some stiffness so should i go up another 1 mg ? the thing is whenever i visit my doctor he says my blood is normal even when i have stiffness. Many thanks .
EileenH Royall
Posted
Some people never show flares in blood markers when they are still on pred. I would go up the 1mg and see how it goes.
The other question has to be as to how low you have been at while on pred - that would be your guide. My personal normal ESR is low single figures - I bumbled along at 16-18 during a really bad flare. That is still "within normal range" - but it is way high for me.
Royall EileenH
Posted
Hi Eileen. Thank you for your reply the thing is i have had pains and stiffness for a long time and i kept dropping down as my doctor said that my blood was fine so i didn't complain about the discomfort so i cant really remember at what level i felt good at, but the pain and stiffness was getting worse. I have Osteoporosis so my doctor says that its not good to be on pred. I will go up by 1 mg and see if that helps, on 10mg it was wonderful no pain or stiffness i was hoping that it would be the same on 5mg. many thanks. Jenny
EileenH Royall
Posted
Well that narrows it down! It is less than 10 and more than 5mg!
It may not be good to be on pred with osteoporosis but there are other ways to deal with that if it is very bad. But being immobile due to PMR pain and stiffness is also a major risk factor for osteoporosis.
If it were me I would try a few days of 10mg to sort out the inflammation and then try 7mg to see if that is still enough. And work from there ...
Royall EileenH
Posted
thank you Eileen for all your help, yes that's what i,ll do to try to get back on track and then I will stay on that dose for quite awhile before i try to go down again. What a nightmare
tracey81846 Royall
Edited
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.
Diana112 tracey81846
Posted
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.
Royall tracey81846
Posted
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
tracey81846 Diana112
Posted
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.
Anhaga tracey81846
Posted
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!
tracey81846 Anhaga
Edited
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
Royall tracey81846
Posted
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 .