I have had what I have thought is 2 long bouts of Sciatica, hugely painful. I have just spoken to a lovely GP who took a lively interest in me and suggested it might be EGPA related, not Sciatica at all...Has anyone out there with EGPA had nerve involvement??
I am seeing the same doctor tommorow morning for more discussions..
Thanks all
I always find it difficult to tell what’s the vasculitis and what isn’t but my nerve pains haven’t been as bad since starting rituximab so I’m inclined to think they were vasculitis related. I gad trigeminal neuralgia in my face which I haven’t had since rituximab (very very mild pain) and I get shingles nerve pains occasionally but usually when I’m close to needing another rituximab.
This could all be totally coincidental, but I definitely think the nerve pain in my face was vasculitis related.
Many types of vasculitis can cause nerve problems these are resolvable if treated asap. If left untreated can be irreversible!!
I have permanent nerve damage from EGPA. It was the nerve issues that ultimately led to my hospitalisation and subsequent diagnosis (EGPA following kidney biopsy).
The consultant was fairly confident that the nerve damage may improve (both legs, feet and right hand). I suspected it wouldn’t, it didn’t, and nearly three years later the neurologist confirmed that it was permanent.
The main issue was the nerve pain in my legs which was ultimately controlled with pregabalin. I get occasional stabbing pains and in the past year or so severe cramps in my legs feet and hand. These are kept in check with quinine.
Other than that and the occasional unsteadiness everything is okay (EGPA in remission). Dexterity recovered in right hand although fingers/thumb a little numb.
Treatment was initially large doses of prednisolone with Cyclophosphamide infusions. Now ongoing drug regime as with others which includes prednisolone and Azathioprine.
You need a mri scan to check the cause of your sciatica. I thought for years my back pain and the associated weakness in my legs was caused by vasculitis but it turns out the nerves in my lower back are squeezed in two places. It would be good for you to get a mri so you can either rule this out or get some treatment eventually.
Thank you everyone
Hi, great you have an on the ball GP. My mainly ENT related GPA had been in remission for 4 years with zero meds. Out of nowhere I “put my back out” chiro and physio made it much worse, sciatic type shooting pains developed - coughing (which I do all the time) was agony. I went to my GPA consultant nephrologist who didn’t run bloods, and didn’t realise it was a flare, despite me moaning about nerve pain in ankles and shoulders on and off for 10 years he always ignored it. His focus was on the cough and arranged ENT to re stretch of my airways under anaesthetic- no sign of inflammation though in my airway, just scarring leading to tightening and hence coughing. The stretch fixed the cough which was a result.
The joint pains spread and went into my shoulders, knees hips and within 8 months I ended up on crutches in agony, unable to dress myself, unable to sit on a normal height toilet. In desperation I went to my GPA consultant again and he ran bloods and declared it a flare and after a week on 20mg steroids the pain was gone, after a month no crutches or cane and on the road to recovery. It took me 6 months to get off steroids as I’m hyper sensitive to them hence the relatively low dose.
A year later and still not feeling right, fatigue and grumbling joint pain I moved my treatment to Imperial in London who advised GPA can run under the radar of blood results as in my case. Also advised by an Imperial specialist that since covid loads of vasculitis people presenting in clinics have suddenly got serious muscle and joint pains - they don’t know why.
I’ve just had my first Rituxumab infusion, as the disease went into my eye whilst I was pondering Imperials suggestion to start meds despite my bloods being ok - that eye issue made my mind up super quick, I had infusion within a week!
I get 2nd infusion next week. The team at Imperial really seem to listen, and care about quality of life issues and I’m so glad I switched to them.
Good luck getting your pain resolved.
PS I was diagnosed 12 years ago but never took normal meds, I had Sirolimus 3x which they use for other auto immune diseases, it’s pill based which I preferred, but I got side effects I couldn’t tolerate. So I’m hoping Rituxumab sorts me out!
Hi. I have nerve issues in my hands, feet and legs, most commonly shooting pains that feel electrical (sure that makes no sense but description seems right) and burning sensations. I am told none of this is permanent its bad enough in my hands that I have had to give up music as I just don't have the control or dexterity anymore. It's worse in a flare but usually just get burning sensations in thighs if I am standing in one spot for too long, and hands can be quite numb. It's been better since I switched from Mepo to Benralizumab.
Thank you everyone for all your help, my lovely new GP has come to the conclusion it is not EGPA related but osteoarthritus, so off we go down that road. I know I am lucky, not only to have a proactive GP, but also a very supportive husband.Oh, and supportive dog, I have just been reminded....
Hello I also have EGPA and have had 8 weeks of back pain which spread to different places in my back and caused numbness in my legs. I have had physio each week privately and it has affected me both physically and mentally as I love going to the gym to keep healthy and control stress levels.
I had my bloods checked as I was worried I was having a flare as it has gone on so long. My consultant said all was fine but sent me for a back X-ray. It showed, like you, I have osteoarthritis. I have now been referred by my GP to a muscular skeletal team but it’s likely to be at least 2 months to see anyone. I will be asking them for an MRI scan backed by my physio to check if there is other damage.
If you get any good advice about dealing with osteoarthritis please let me know. My back pain is now at last gradually easing with rest and gentle exercise. Thank you and good luck
Can you tell me if you have found any painkillers helpful and if so, what they are? Have started to take Nuerofen and now been told not to as I am on Methotrexate. Have been prescribed Codeine, but stopped that as it didn't seem to help and made me feek sick all the time! Help!
I was DX with Anca associated GPA in 2017. Treated with Azathioprine, Prednisone, and Rituxan. Been in remission since 2019. However, I am left with severe neuropathy in my feet and it's moving up my legs. I also have half of my left hand partially numb. I have been taking Hydrocodone pain killers for he past 3 years for lower back pain (Sciatica, stenosis, etc...) and I can tell you it doesn't have any effect on the nerve pain in my feet or legs.
I found pregabalin has helped enormously.
Hey Mik. I tried taking Gabapentin for the nerve pain years ago and it helped some but the downside was that it totally killed my sex life. Apparently, it affects the nerves in other parts of the body that you don't want it to. I read that pregabalin is 6 times stronger than Gabapentin so I can't imagine what that would do.
Yes, unfortunately there are downsides to all the medications. I hope you find something that helps.
I only take paracetamol I’m afraid as I’m asthmatic and can’t take neurofen. I take amitryptiline at night as my nerves have been damaged by EGPA. My physio uses ultrasound on me to reduce inflammation which helps
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