Husband has GPA (Wegener's) which is just about going into remission with 3rd session of Rituximab on 30 Dec. Prednisilone is now down to 7mg per day. All good news but........since July he has been suffering from what we believe is Sciatica. Knee Xray & MRI of back show no squashed nerve. His pain extends from lower back thro to thigh, knee, lower leg &ankle. Painkillers atm are 4 x 1000mg Paracetamol, 4 x 15mg Codeine & 6 x 100mg Pregabalin. It's not touching the pain!!! & he's feeling like a zombie so he's going to come off them.
The GP is now sending him to an Orthopaedic dept., pain clinic & hip X-Ray.
Questions. Has anyone else experienced anything like this?
The pain is stopping him from walking and totally stopping him from performing everyday tasks. It's much more debilitating than his Vasculitis has ever been.
Could the reduction of steroids have unmasked a problem? The treatment for sciatica is often steroids but his specialist thinks the problem is unconnected and doesn't want him to increase.
We still have a few options to investigate but your thoughts would be interesting.
Best wishes & Happy Christmas
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Nadine99
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I have PMR and Gca and got down to 8 mgms prednisone by middle of September, then out of the blue developed sciatica, it was awful! I am widowed and live alone and could hardly walk, had to order walking aid from Amazon! On Tramadol but they were knocking me out and then took advice given on this forum and found a physiotherapist who understood PMR and did Bowen therapy. In 5 sessions he sorted out the sciatica! After the first treatment I was able to stay in bed all night for the first time since I got it! It really did work for me and was worth the money it cost me.
Thank you for your reply. My husband has tried a Chiropractor, 4 or 5 sessions but it didn't help. I'll look up 'Bowen' therapy. I'd pay the earth to take this pain away from my husband but it's just not knowing the source of the pain.
I'm pleased and perplexed to find that others may have experienced an association of symptoms.
The only joy in this is that he now does the ironing, but I have to cut the grass!!
I used Bowen therapy to manage low back pain and sciatica too - it's sort of "chiropractic for soft tissue" and a very gentle therapy so completely safe to try. One friend of mine had been in bed for 6 weeks, only able to get to the loo using a zimmer frame. Eventually she made an appointment with my practitioner - she hobbled in with a friend on one side and a walking stick on the other as the zimmer wouldn't fit in the car. After an hour she walked out and got to the car before realising she'd left the walking stick behind! It took more sessions to really sort it and now she goes for a couple of sessions every 6 months or so.
It doesn't work for everyone's problems - but the University Hospital of North Durham offers it through their chronic pain clinic, it isn't a totally alternative therapy and is recognised by mainstream medicine.
and if you click on Treatments at the top it will give you a few links which explain it.
There are a couple of associations in the UK that tell you about it and where to contact a therapist - since it would be too much to hope you are near Durham/Newcastle! Google "Bowen therapy practitioners list"
I was on 8mg pred and developed sciatica in my left side out of the blue, it is excruciatingly painful from waist to foot. The GP suggested I bought paracetamol which was a waste of time. I upped my pred to 10mg and it improved very slightly. I then tried reducing to 9mg and was in the same awful pain again. This week a different GP gave me co-codamol with 30mg codeine, up to sixteen a day. This has improved things a lot, I am also staying on 10mg of pred at the moment. The only trouble is I can't drink!
Thank you for your reply. My husband has 3 things to do, Xray on hip, Rituximab infusion and pain clinic. If nothings done then, I think we'll overall his specialist and up his Pred (a little bit) just to see if it alleviates the pain and we might adjust the Codeine.
My husband still has a pint or two but just never drives.
I have WG and have Siatica but not all the time. The Docs do believe I may have Discs nipping a nerve, but since them I've lost 1.5 stone and doing lost of stretching exercises and I'm getting a massage which was every 2 weeks but now monthly. She massages the Siatic nerve and I can feel it's uncomfortable wen she touches it. I think the massage defo helps if you can find one in your area. Good luck and hope this goes as this is so painful I know how he feels. Xx
I had quickly developing severe pain in my right thigh & leg from the beginning of Oct which appeared at the time to have been brought on by a very long journey. Initially my GP thought it was simply muscle strain as, although the pain was severe, I had so much flexibility of the muscles in the early stages.
I have seen a rheumatologist twice and he diagnosed osteo-arthritic hips. An X-ray confirmed this.
I have a ref to a NHS physio in Jan & a prescription of 30/500 Co-Codamol , of no more than 6 tablets in 24 hrs. This was because of other medication for WG & the possible negative affect on my liver.
The pain is just now easing after 7 weeks but has been severe and my walking has been very affected. I still hobble around but at last there is an obvious improvement.
I have minor forms of strokes and since my last at the end of November I suddenly started getting pain at the back of my leg, not sure what it was have not gone to GP? But yesterday no longer could sit walk and grumpy as hell with strong deep pain! My partner took me to boots and Boots a special knee support £33.00 Wow it has help so so much! Not cured but not as much pain the best £33.00 spent. I am very interested in everyone's comment. Thank you for discussing this problem with everyone.
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