GPA and lower back muscle spasms

[Marieke66]

I was diagnosed with Granulomatosis with Polyangiitis (GPA) Last August and had 3 high doses of steroids and 3 lots of Cyclophosmahide at 3 week intervals, the result was not as good as rheumatologist had hoped for and she is referring me to a specialist clinic in Southampton, in the meantime my steroids have gone back up to 40mg.

I have just spent 4 weeks in hospital with pcp pneumonia, all related to the vasculitis. However over the past 2 months I have had increasingly more muscle spasms in my lower back. This happens after I stand up or walk for more than 5 (sometimes only 2) minutes and the cramp starts in the very base of my spine and is so bad I have to sit down for a few minutes. The pain radiates round to my hips and sometimes also my stomach. The pain wasn’t there if I was sat down but happens only when walking or standing up. Over the past couple of days the pain is now there when I’m not stood up or walking but feels more like a burning sensation. The scary thing is that I cannot continue walking when the muscle spasm happe. My mobility is already impaired due to spinal surgery 8 years ago where my l3 l4 were bolted together to prevent the nerves from being crushed by my discs. The pain from that is completely different and is managed very well with medication and having learnt distraction techniques to cope with chronic pain.

This is different all together! Is the muscle spasm in my back due to the vasculitis, is there another reason? Has anyone experienced this ?

[John_Mills Volunteer]

I have never come across anything like you describe but it not impossible it could be the vasculitis. Is your appointment at Southampton very soon?

[PMRpro]

I have just had something very similar. I have polymyalgia rheumatica and very probably large vessel vasculitis though imaging was never done originally so that is surmise. I have been on pred for well over 8 years and am generally well managed.

However, I also have myofascial pain syndrome which leads to muscle spasms in my back. I slipped on the snow in December and have had niggles since but I was also having physio which I thought was holding it but about 2 weeks ago, after a week or so with flu I suddenly found myself unable to get up from sitting to standing without excruciating pain at pelvis level. I struggled with it for a week, increasing my pred dose a bit which helped and has helped before. MPS is caused by the same inflammatory substances as PMR/GCA except they are localised in muscles and muscle fascia rather than being systemic.

When it became obvious this wasn't going to settle I was able to bring forward a rheumy appointment - a new experience for me, we haven't had a proper rheumy here before! Anyway, he decided that it was rampant inflammation in the lower back muscles and sacroiliac joints and he would treat it for a week with daily infusions of high dose ketoprofen (an NSAID, similar to ibuprofen). The pain was damped down after the first infusion - after 7 it is gone and has remained OK for 2 days so far. I hope it lasts!

Needless to say, given the cocktail of drugs I am on for atrial fibrillation and the pred I was somewhat concerned about the approach combining NSAIDs and pred but it has worked and I have survived apart from a few rather interesting bruises from the infusions! He says he has used this approach on many occasions - and he is a renowned PMR/GCA expert so is used to patients in pred. The but comes now - I'm not in the UK so management practices here are rather different,

[ZiggyDiego]

I've had lots of musculoskeletal problems associated with GPA and treatment by prednisolone. The GPA causes very localised pain, tingling, numbness & loss of movement. The prednisolone makes my muscles, joints & tendons more prone to injury & slower to heal. I had 3 methyl pred infusions last October, damaged the tendons in my foot and they're still painful, although better than they were with help from physio. It has been difficult to get help for these problems as everyone is more focused on organ damage, but I'm glad I persevered. I walk very slowly but keep trying...

[jayf in reply to ZiggyDiego]

Poor you! I'm with you my friend. I too had the 500mg methyl pred infusions last October.

Ask your GP for Diclofenac 50mg tabs. Suppositories are less aggressive. With Omeprazole to protect your guts. Up to 3 per day. They'll tell you about the risk to the heart etc. Just demand it. I've used it on and off for my Wegeners for 10 years.

By God it works. Really works. And an anti inflammatory gel. There is stronger than Voltarol.

I'm 99% sure your quality of life will improve dramatically.

All best. Let us know how you get on....

[ZiggyDiego in reply to jayf]

Thanks. Is voltarol ibuprofen-based? (I'm not allowed ibuprofen anymore). I used to have diclofenac but it wrecked my stomach. I take 40mg omeprazole anyway: would I have to take more? But the deep freeze gel is good and doing my physio exercises really helps.