DorsetLadyPMRGCAuk volunteer

Hi,

I feel for you, I have rampant arthritis, and know some days you really feel down. As you know my GCA has been in remission for 2 years, and hopefully yours will be soon.

I had knee replacement in July - brilliant, but now need a hip replacement on other side. My back is a bit iffy as well (but not bad enough for any invasion treatment). I find that exercise, physio, massage, acupuncture and steroid injections keep me mobile, but some days are very difficult.

You may find a slight increase in Pred may help, but from my own experience I doubt it.

It seems that once the body gets rid of one pain, it finds another one to replace it!

Best wishes.

PenelopeVita-Finzi in reply to DorsetLady

Yes, exactly that! If it is not in one place it is in another. I am very reluctant to increase the pred so I am relieved to hear you don’t think that would help. I was hoping that all these aches and pains were due to my body adjusting to reducing the pred and not to rampant arthritis. Thankmyou for your help.

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PMRproAmbassador

I had severe low back problems which a private orthopod I saw for whiplash after an accident claimed (without any imaging) were due to wear and tear in the lower spine. Luckily the hospital orthopods I saw were less convinced and they took a differnt approach. As their first line try led to severe atrial fibrillation (i.v. diazepam) I was handed over to the pain clinic for the slow tactics. The specialist there could not believe that any doctor had not recognised the state of my back muscles - they were in spasm and as hard as boards. It took many months to get them soft and back to normal - but the excruciating back pain is now rare although it does happen if I try to do something that puts too much strain on the muscles. When it happens I need more pred for the PMR because they are linked - myofascial pain syndrome is found much more often in PMR patients and they are both caused by the same inflammatory substances, just in different places.

If the cortisone shot released muscle tension on one side (and it almost certainly will have done) - the other side will be protesting at being asked to adjust to the new situation. Nothing is unilateral! Before agreeing to an operation I would want to explore conservative approaches first so I agree with your GP.

The difficulty in the UK is finding a physio who knows what to do and has the time to do it - before you can do physio exercises, the spasmed muscles need to be sorted out. Here in Italy I get needling techniques which help - that is available in some areas of the UK (pleanty around north London if you are still living there) but not others. Look for intramuscluar stimulation for a start. I also get manual mobilisation/massage from the physio department. In the UK I found that Bowen therapy helped a lot - I had an amazing therapist and that is important - enough for me to do Pilates which also helped.

PenelopeVita-Finzi in reply to PMRpro

Thank you for taking the trouble to reply to my query in detail. Your answer is very useful and gives me some alternatives to try.

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