I have been off prednisolone since march. Hooray. but I am in agony,yes agony withmy groin knees and mostly left left leg down the side which seems to have gone further up my leg.today it woke me and I wanted to cry nothing would get rid of pain. I try to walk about as much as possible which does help it . Please
Have you any low back pain Especially on that side?
It sounds as if it could be sciatica (maybe) and trochanteric bursitis (more likely) - is the leg pain on the outer aspect of your thigh and it hurts to lie on that side?
Since I got to 5 mg prednisone I started to get pain everywhere. I am now finished with prednisone for a month now and still feel so much pain. It seems my old arthritis and slipped vertebrae pain has come back with a vengeance. Tylenol eases the pain. NSADs help much better but I can’t take often because of gastritis and heart issues. I went to a pain doctor who gave me a lumbar epidural injection. It helped me tremendously with my back pain. I know prednisone kept my arthritis at bay. I really don’t have any advice for you since I too have been racked with pain. Hope you feel better soon
Is it PMR pain? You are really NEVER reducing relentlessly to zero - you are titrating the dose looking for the lowest effective dose for YOU. If you were good at 6 or even 5mg but then pain reappeared that means that is where you should have stopped for a time. It didn't men you wouldn't get lower - just not at that time.
The pred cures nothing - the higher starting dose clears out the existing accumulated inflammation in various body tissues and then you look for the dose that is adequate to manage the inflammation caused by the new batch of inflammatory substances shed in the body every morning about 4-4.30am. And you need that for as long as the underlying autoimmune process causing it is active - which contrary to what many doctors believe can be a LOT more than 2 years.
I didn’t have PMR. Although I know many people with GCA have PMR. I’m not sure what PMR feels like but I thought if Tylenol or NSAIDs help then it is not PMR.
. “I know prednisone kept my arthritis at bay.” -
not strictly true, at higher doses if masked it the pain, but the not the arthritis per se. ...that was still there, and probably deteriorating without you realising.
I guess I worded that wrong. I probably should have said that it masked the pain of arthritis. I know it was always there. Your right, it probably has deteriorated even more in this last year. I’m just amazed at how much. Even though I often had arthritis pain before GCA, it was nothing like this
Know, been there…..comes as a bit of a shock after 4years almost - in my case….
I was wondering if it were sciatica too. I have had it a couple of times and it is agony to breathe even! Is you groin pain just one side or both sides?
Have you had a hip x-ray?I am wanting for replacement hjp..same symptoms.
The pain down your leg could be due to pressure on the sciatic nerve in the lumbar region of your spine. I should point out that you don't always feel pain in the back itself. This wouldn't affect your knees but could be co-incidental. Sciatica is a dreadful, persistant, pain which no drug can ease. Rest is often the only solution, getting into the least painful position...no matter how precarious it is. I have been there and can empathise with you if that is what you have. Should it persist an injection into your spine would help. No matter the cause of the pain I hope that you get it sorted soon. K.
I was diagnosed with PMR last October, put on preds, slowly tapered, , still had pain, not typically associated with PMR. My markers were normal, both my GP and Rheumatologist decided it wasn’t PMR.I’ve had exactly the same pain you describe, no pain killers touched it, even Opium pads.
Yours sounds like sciatica, in that it eases as you walk, I was the opposite, I couldn’t, still can’t walk more than 100 yards.
Long story short, I’ve had five X-rays and a MRI scan, have been diagnosed with Severe Lumbar Spinal Stenosis and two Herniated Discs. I have an appointment with a Neurosurgeon next week.
Anyway, I’d just like to say how helpful this forum has been, it’s a pity GPs are not as knowledgeable about PMR as you are
Many thanks for all your advice
Maybe I’ll be joining a spinal forum next.
Lucky you neurologists are brilliant but can't find out anything about my pains. Now she has referred me back to rheumatology I feel I am going round in circles none seems to listen to the whole story just takethe bits they want. Sorry I am moaning now x
Poor you. Groin pain is highly indicative of hip problems. Good house get sorted soon and some pain free time. Best wishes x
Thank you so much that reply gave me a boost
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