You know what the queen would say if she had a bad year, well, I have had 2 years on the trot.
My wife sent my last post about 2 months ago. Asking if you thought it was PMR related regarding my right knee. Sharp pain in the centre, as in deep within the knee and I can't bend it. I have been to the physio for 8 sessions. He tried everything, but it didn't make the slightest bit of difference. So 12 weeks on, I have been told I have arthritis everywhere and also tendonitis. Had an x-ray and the doctor does not know what the problem is and suggested I go up in pred to see if it makes any difference.
I would appreciate your thoughts on the matter please.
Best regards,
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There have been a couple of posts saying something similar recently - a bit more pred and a bit more time and it disappeared! Try a bit more pred for a week, say add 5mg - you can always drop back if it doesn't help. Otherwise - who says arthritis everywhere? Have you imaging evidence of that?
I've had x-rays and scans all over at different times for different things, hands, knees, back, feet and they have found arthritis. These are the places I know about.
My dosage at the moment is 2.5mg one day and 1.25mg the next. If I increase to 5mg for a week, do I go back to my original dosage if it doesn't help or do I have to taper slowly again.
I would ask your doctor for meds specifically for arthritis, rather than upping Pred “ to see if it works”. Have you tried the rub on creams? I get prescribed Capsacin cream, made from peppers......works for me. Valerie
I don’t know how to usefully advise you, but currently I have agonising pain in both knees. Very embarrassing hobbling down steps, getting on and off trains and in and out of cars. Although this symptom has coincided with a PMR flare my hunch is that I have overdone things, add that to the damp weather and pre-existing arthritis and I think I have my explanation. Old fashioned feet up before my Christmas guests descend is my best hope.
I have had PMR since March 16 and only earlier this year did my knees start to join in. Became gradually more debilitating and I was very similar to Sheffieldjane, hobbling around. Seriously depressing too as walking my dog and playing the odd few holes of golf was my exercise and was finding that really painful. Everywhere else was doing fine so I continued my very slow taper. Couldn’t get below 9mg though as the knees screamed at me. I had xrays showing no signs of osteoarthritis as in bones all fine just a slight sign of swelling. Have had fluid drained and steroid injection in left knee twice in past 4 months, most recent one has helped the most. Rest of body still ok! My rheumatologist believes I’m either heading into an inflammatory arthritis or possibly rheumatoid (I am negative for rheumatoid factor but that’s not conclusive test) along with my PMR or who knows! We agreed to introduce hydroxychloroquine which I started last week. My liver tests have been elevated hence reluctance to start methotrexate. I have no idea if it will help at all and for the moment I have remained back at 12mg and intend to stay there for a few weeks. A week of 13mg had removed all pain everywhere so hence my drop. Currently I’m felling not bad, knees ok and not as bad as they were so I’m more mobile therefore happier 😁 which is hugely important.
So it’s worth asking about steroid injections especially if it’s localised in your knees. Have you ever been on anything else other than prednisolone if they are thinking you have arthritis?
I started on 5mg of pred today. Waiting to see what happens. Unfortunately today I had to dig out an old tree stump and rose bush etc and then had 3 cubic metres of shingle to pull about. But that's what I do, can't sit still, drives me crazy. I know you will say rest, but I ache more sitting about.
I found a great cream for arthritis for my hands, but it only works for about 3 hours ish. It's called VIGO, joint gel.
I've also had steroid injections at different times in my knees, elbows, feet and hands. About 14 ish and not one worked for me. Having abused my body for years with work and sports and 5 mile road runs every day. But giving my time again, I wouldn't change a thing. So have to grin and bear it.
Thanks for all your input. Will let you know what happens.
I too have loads of knee problems, and when my PMR symptoms emerged, it was in the back of my knees. An x-ray didn't reveal much, but eventually I had an MRI of both knees and was surprised just how many organic problems existed (every type of meniscal tear, torn ACL, bakers cyst behind one, osteoarthritis in both, right knee much more deterioration).
I would suggest an MRI of your knees if you haven't had that done already. The details can inform a path for treatment moving forward. Not sure what to suggest regarding pred dose, but I can concur that pred has certainly helped with my knee aches and pains. Medrol injection into my right knee has provided relief for about 2 months now, its just starting to wear off.
Sounds like your very active lifestyle may be contributing to your woes, but so pleased you've found a topical cream that provides some relief, albeit for only 3 hours). Hope the pred increase results in some relief.
Hi my wife has a bakers cyst since June Physical therapy has helped some. But Floyds is still build up. Having a hard time walking is affecting her hip. She is still on Actemera And has been complaining that she feels like the PMR is coming back pains all over her body. Anyone else on Actemera for a PMR?
There are some in the USA - but Actemra is only a very expensive steroid-sparer and does not necessarily mean you can stop taking pred altogether, just you may manage on less. There are thought to be different mechanisms for PMR and GCA - and Actemra only works for the IL-6 cytokine.
Pred at the right dose works if it is PMR - it doesn't cure anything but nothing does. It is a chronic illness that you have to learn to live with until it cooses to burn out and go into remission. Which it does for 95% of patients sooner or later.
But living with PMR is a question of taming a gorilla and making lifestyle changes that don't wake it up:
They did try draining it, she was told instead of trying to puncture a balloon it was like trying to puncture a basketball. She was also told that due to the PMR it would keep filling up. She is currently going for PT they told her she has reached a plateau.
Poor thing. Have they decided what the cause of it was? Was it damage to the knee do you think or arthritis or something else. I don’t understand why they can’t drain it again, but who am I to comment!
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