iga vasculitis

[Frosty_nights89]

hello my name is Marc I have been diagnosed with iga vasculitis. I’ve been struggling for twelve months trying not to let this beat me do you legs improve or get worse as you get older

[Nadine99]

Depends what problems you're having with your legs

[Frosty_nights89 in reply to Nadine99]

I have foot drop on my left foot and numbness in both feet and some muscle wasting

[piglette]

I think everything gets worse as you get older! You have to be tough to grow old, it is not for the faint hearted.

[Frosty_nights89 in reply to piglette]

Luckily I’m only 64 not old yet but I’m a tough one thanks to upbringing in west London

[piglette in reply to Frosty_nights89]

West London sounds rather up-market!! Mind you, I ran a youth club until I got PMR and that will set you up for anything!! And I did it for free.

[MIK65]

Hi Marc,

I have numbness in my legs, feet and right hand due to EGPA. For me the numbness has not improved (been over three years) and the neurologist confirmed that things are not going to change. Fortunately the associated pain, has in the main been alleviated through medication as have the muscle spasms I experience. I have some muscle wastage in my right hand but nothing that causes me any issues. The best bit of advice my consultant gave me regarding walking etc, was ‘use it or lose it’. I now have an exercise regime which definitely helps (also with overall well being). Age will catch up with us all but I’d like to think 64 is still relatively young (I’m 58)! I hope things can improve for you.

All the best.

[Frosty_nights89 in reply to MIK65]

Mik65 I have seen the neurologist 3 times and I am due to see him again soon I also have a training regime on a exercise bike so all being well my legs may get stronger and I wish you all the best

[eh66]

Pre-diagnosis I was wheeled into hospital by wife. I couldn't move unassisted due to the pain. Initially they thought I had Reactive Arthritis. Initially I was 90 mg Preds plus Morphine. Since diagnosis three years ago and treatment basically multiple immunosuppressant infusions. I have done approximately 10 000 KM on the bike and can run 10 miles.

I still have days where my joints ache. My Vasculitis related Raynaud's has mostly cleared up, though my sinuses are still a bit crap. I started by walking a little each day with the dog. I eat a non-vegetarian diet but high in plants; fruits, nuts, vegetables, fermented foods ,and basically no ultra-processed foods, which are often inflammatory.

My point; it has got better which is down to both the medical treatment 80% and 20% due to my life style.

[Suzi70 Administrator Vasculitis UK]

neuropathy is quite common with some types of vasculitis. Has anyone suggested you see a Neurologist?

[Pollie in reply to Suzi70]

I would echo this suggestion...it would seem essential in your case. You may benefit also from being referred t...by the neurologist.. to an Orthoticist who may look at ways of helping your foot drop. I feel, as someone else said, you do need to exercise frequently. I wear a device for my foot drop and move around reasonably confidently...though I always try to take care. Hope you can get the help you need.

[Frosty_nights89 in reply to Pollie]

Pollie thanks I have a foot brace also and go careful when I walk but the pain in my leg irritates it but I’m trying to push through the pain and keep on moving take care

[Hidden]

I started having numbness and pain in my feet several months before I was DX with C-Anca GPA. The neuropathy in my feet has gotten better as far as the tingling and sensitivity to touch but the pain has gotten worse. My right foot has always been the worse of the two. It feels like that foot has been put into a crusher and all the bones have been smashed. It hurts to have shoes on my feet. The symptoms have crept up my legs and my calves feel achy all the time now and I don't have much strength in my legs. I'm also being treated for lower back pain so that doesn't help any. I guess in short, it hasn't gotten any better for me and has actually gotten worse.