Cause of pain: I have had GCA since August 2014 and... - PMRGCAuk

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Cause of pain

PenelopeVita-Finzi
PenelopeVita-Finzi

I have had GCA since August 2014 and have been on Pred since then plus Methotrexate since 2015. I have now reduced to 2 mg Pred with the same dose of Metho (15 mg once a week). I have no pain in my head and my consultant feels that I am cured. Unfortunately, I am in a lot of pain and weakness in my lower back and legs. I had severe sciatica and went to a back specialist who took X rays and an MRI scan. That showed arthritis and scoliosis causing a kink in the lower spine so a nerve was trapped. He gave me a cortisone injection that gave me considerable relief on the side with acute sciatica and that has lasted for four months. But the pain other side and weakness has, if anything, increased. The consultant said that he could give me one more injection and then I was looking at an operation.

My very good GP was very against an operation and recommended physio and gentle excercise. I have been walking everyday and doing gentle Pilates but I am getting pretty despondent.

My question is: could all this pain be caused by reducing pred to a low level (very, very slowly) or is it due to my back problems? I think that is unanswerable! I was in such despair yesterday hobbling along with a stick that I began to think an operation might be the only answer. As always, many thanks for all your support over the years.

4 Replies
DorsetLady
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.

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.

PMRpro
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.

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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