PMR time frame ?
Posted , 8 users are following.
My initial pain started in my right knee and so severe my GP was looking towards preparing for knee replacement. From the knee the severe pain caused sciatica in my right leg.
pain from knee and sciatica were so bad i could not sit down or drive.
After x-rays and CT scans my knee replacement was on hold as there was no obvious damage in knee structure.
The pain then went to shoulders and from initial knee pain to now it was 8 weeks.
After self diagnosing my PMR and then asking my GP where do I go from here i started on Prednisone.
Initial dose 50mg which eased all pain in 6 hrs, miracle drug.
on reading various forums i feel starting dose should have been 25mg, as a week on 50 stopped me from sleeping, left me slightly agitated.
So from 50, a week then 25, two weeks to 12.5, three weeks to 10, three weeks to 9 where i am up to now.
i have shoulder pain in the morning but a hot shower fixes that.
I have lost weight due to rapid muscle wasting leaving me weak.
in two weeks i will try 8mg, the shoulder pain i can handle but sciatic pain i can't so we
wait and see.
Before all this i was fit and healthy and only retired from working 12 months ago.
0 likes, 9 replies
Boone peter48568
Edited
I assume you have done some research on PMR on the web. Your symptoms do not seem to fit neatly with the typically reported symptoms. Mayo clinic lists symptoms as follows:
Aches or pain in your shoulders
Aches or pain in your neck, upper arms, buttocks, hips or thighs
Stiffness in affected areas, particularly in the morning or after being inactive for a time
Limited range of motion in affected areas
Pain or stiffness in your wrists, elbows or knees
While Mayo's list does finally mention knees, there are a lot of typical PMR symptoms listed that you are not having. Fortunately! Note that I am far from an expert - just expressing my thoughts about your report. In fact, I may have been misdiagnosed myself, but at this point I'm not even sure. This is a good discussion forum, though - there are knowledgeable folks here. Best of luck!
peter48568 Boone
Posted
Thanks for the reply Boone, a lot of other forums i read did mention starting in the knee, then buttocks/lower back then across shoulders.
All i have now is shoulder tightness which i can tolerate on the 9mg dosage i am on now.
The biggest thing noticeable is the loss of muscle tone hence loss in weight.
sierrapamela peter48568
Edited
My heart goes out to you. It is frustrating. Do not go down to fast on the prednisone as you can get another flare up and then trying to figure out how to get out of the flare is problematic. Have you found a doctor that works with other PMR people? I do not know how important this is, but you need someone who is familiar with it. My original doctor way over prescribed. And was trying to add other drugs like plaquinel. She was on the internet checking things while I saw her and I realized she did not have a clue. (She was a rheumatologtist) That was a disaster and I had major allergic reactions to plaquenil over the next 14 weeks. Now I have an integrative doctor who is working with why the inflammation happened in the first place. He did a GI panel (which showed a lot of issues), an IGG panel for food that cause inflammation and regular blood panels. It is a long slog, but hopefully with the new diet it will take the inflammation down so eventually I can reduce the prednisone from my current 10mg to less.
peter48568 sierrapamela
Posted
thanks for the reply, looks like the 9mg is a fine balance for now so will stay there for a while.
You are right, getting a Dr that understands the ailment, mine doesn't very well, can't get to see rheumatologist until September close to where i live.
My diet has not changed so big job working that out like you have.
EileenH peter48568
Edited
You have done very well to get to 9mg so quickly - my advice would be to slow right down now. This isn't a race - or if it is it is the sort the tortoise won!
I also had knee pain very early though not as bad as you describe - but also hand pain. I saw a rheumy about the hand pain, mentioned the knee pain, it was sharp and sudden, often making me feel the knee was collapsing. The lady insisted it was OA, she "could feel it". Over 13 years later and an x-ray because of a return of a similar pain and there was no sign of OA anywhere. A few weeks later the pain had gone again. No two people have the same symptoms - and they often don't fit the pre-conceptions.
amkoffee peter48568
Posted
I know a lot about back and neck pain because I've suffered from it for 14 years. I also suffer from PMR. I suspect the knee pain was sciatica and that's what caused your knee pain. prednisone can relieve pain from inflammation regardless of why that inflammation is there. I suspect it's not PMR but instead you're having some spinal issues. You did not mention having an MRI done of your neck or lower back. Without this your doctor cannot see the soft tissue damage that may exist in your back. Disc problems which is the most common cause of back problems cannot be seen on an X-ray. I'm not even sure how much they can see from a CT. I am frustrated however that doctors always go with X-ray and then CT which emits a great deal of radiation. Instead of an MRI which has no radiation. I don't want to make this post any longer but if you would like me to tell you what I know about back and neck pain and sciatica just private message me and I'll be happy to tell you what I know.
amkoffee peter48568
Posted
I know a lot about back and neck pain because I've suffered from it for 14 years. I also suffer from PMR. I suspect the knee pain was sciatica and that's what caused your knee pain. prednisone can relieve pain from inflammation regardless of why that inflammation is there. I suspect it's not PMR but instead you're having some spinal issues. You did not mention having an MRI done of your neck or lower back. Without this your doctor cannot see the soft tissue damage that may exist in your back. Disc problems which is the most common cause of back problems cannot be seen on an X-ray. I'm not even sure how much they can see from a CT. I am frustrated however that doctors always go with X-ray and then CT which emits a great deal of radiation. Instead of an MRI which has no radiation. I don't want to make this post any longer but if you would like me to tell you what I know about back and neck pain and sciatica just private message me and I'll be happy to tell you what I know.
Anhaga peter48568
Posted
The sciatica is probably what we call an "add on". For a while I had such awful hip pain I thought I should get myself on the waiting list for hip replacement. After a while a diagnosis of PMR for other difficulties I had (basically couldn't do much of anything on account of the pain) all my aches and pains disappeared with 15 mg pred. However with tapering dose the old osteoarthritis came back, as did the hip pain. I had started going to a physiotherapist and she remarked that the muscles in my back were like bricks, they were spasmed, and did a number of techniques to reset the electrical signals in my back, which relieved my back pain. I also took to sleeping with a hot water bottle under the buttock of my afflicted leg, and within a couple of days, or I should say nights, the hip pain went away, never to return (five years now). So I'd say the sciatica was also caused by spasmed muscles and the problem originated in my spine where I have quite a lot of osteoarthritis. In my case more a problem from osteoarthritis than PMR although others have similar issues from tight muscles and may not have any sign of OA.
peter48568
Edited
Yesterday i forgot to take Prednisone at 7am and by 8pm when i remembered i was in agony across shoulders and severe headache.
i took them at 8pm and went to bed slept until 9am this morning.
Today still fuzzy as i took the meds at 7am as normal so technically there is a higher dose in my system.
it sure doesn't take much of a change to throw things out of order.
I am on 9mg and by morning there is a twinge in my right knee and slight soreness across shoulders, that i can live with for now.
With shoulder pain a hot shower as hot as i can stand relieves most tightness.