Vasculitis UK
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Churg-Strauss Vasculitis and Foot Drop

Hello,

I am from the US. My fiance' was recently diagnosed with Churg-Strauss and has a severe foot drop and paralysis in same leg due to loss of nerve. Has anyone had their foot drop go away in time or by surgery? He is also in pain all of the time. A devastating disease for both of us to live with. Any advice is appreciated.

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Hi there, I was diagnosed with EGPA in Nov 2016. I presented with left foot drop,including numb toes and part of foot with numbness down right leg from knee to end of toes - and huge foot pain. My left hand is numb except for the little finger and the one next to it. Luckily my specialists picked up my extremely high eosinophil count thru blood tests and immediately put me into cyclophosphimide IV and high Prednisone IV. I was in hospital for 5 weeks and came out with no foot drop, and normal eosinophil. I am now now on low dose pred at home and methotrexate orally once a week (for 2 years). I m slowly regaining strength but will have to wait a while for the nerves to grow back in hand an feet. It is amazing how month after month you find little things that you couldnt do suddenly you can do again. My father died of EGPA at my age, but then there was only a 30% survival rate now it is over 90%. Take it slow and easy - find your 'new normal' and work within that. Good luck, it is a long hard road but well worth keeping your morale up because it does get better.

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Leonies,

Wow thats great you came out with no foot drop! Do you still have numbness in your leg? My fiancé was diagnosed with EGPA a week after he got foot drop and numbness in his leg. It took over a month and 6 times to ER where doctors were baffled by his leg rash. It was his Pulmonologist who did a biopsy and diagnosed him. He had numbness in both legs and foot drop in left foot. After 3000mg of steroids in hospital his right leg came back but his left leg is totally numb from knee down and severe foot drop. He is on methotrextrate and 20mg prednisone. He is in constant pain, sometimes excruciating. Wears an afo brace that was custom made but it is uncomfortable. We are looking into surgery as an option to see if anything can be done for his foot, however I have seen on some forums that foot drop can come back. The doctors aren't very optimistic regarding it coming back. We won't give up.

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He probably should see a rheumatologist with experience in vasculitis as the management of prednisone and methotrexate is quite specific to EGPA. I haven't heard of anyone tapering to 20 mg of pred so quickly. Best wishes

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He was seen by Dr. Seo at Johns Hopkins, specialist in Churg Strauss vasculitis and a local Rheumatologist working together with his pulmonologist. Was on 40, then down to 30, 25 and stopped at 20. I worry about him getting a flare up.

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As long as he's getting that kind of attention he should be getting the best he can. Most of the time, a flare doesn't just arrive overnight. There should be an indication of change in one or more of the blood markers so the doctor has a chance to change the pred if necessary. I would guess that he's getting blood tests fairly regularly at this point. You'll get used to reading the blood results over time. The doctor can explain the significance of the eosinophil, sed rate and c-reatine protein levels. It's great to hear that he's got access to the specialist. Read what you can online and from the churg-strauss society. It helps! Best wishes, Karen

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Thank you! I appreciate the advice. We are still in the learning process since his diagnosis. Researching and looking for groups and forums for information and support. He gets blood work about every 3-4 weeks. Is that about right? Again, thank you.

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Hi Bev, I get my bloods done fortnightly and very shortly will be monthly... if things are still looking good. I am having trouble tapering down the pred to 5mg.. I go down 1mg a month. I have taken it back up to 6 but see my rheumy next week so will talk to him about the side effects of going down to 5mg. Its a bit scary having all the numb and pain symptoms again.... we are all so different in this journey. I belong to several facebook forums for peripheral neuropathy, Prednisone, and vasculitus.

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Hi Bev I have lived with churg Strauss for over 5 years now. It affected my lungs & has left me with asthma & I had foot drop in right foot & milder nerve damage in my lower left foot. I am lucky as after a year the nerves started to grow back v slowly. I can walk reasonably well now but I still get foot pain particularly at night but it is a lot better than it was. I take a low dose of amitryptiline at night which really helps. I had lots of reflexology & went swimming & think that helped too. I used to take pregabalin too but don't any more. I did make a video for GSK to help their researchers which is on this site under my name which described my journey. I am still considering foot surgery but it would mean another six months at least not being able to walk & ive already had a year of that. But the disease has left my feet misshapen which causes problems. They could probably correct that but there are risks & no guarantees it would remove the pain caused by damaged nerves. I hope your financee makes good progress. It is a difficult disease & requires a lot of patience - but I am back at work part time now & leading a reasonably normal life. Good luck

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Hi Bev,

As Katie says we are all quite different so I wouldn't say what the absolute best timing is for blood work. I have had different schedules over the years. It changes when I'm very stable [then it's once every 3 or 4 months!] or like now, I'm tapering the cellcept [mycophenalate] and I get tested every 6 weeks. Also, I've found differences between different countries. In Canada, we have differences from province to province. You can check this site and there's lots of references to face book sites: cssassociation.org/online-m...

I had heart and lung failure when I first got sick, so it was touch and go for me. I also get a lot of pain at night in feet and lower legs but it is not caused by foot drop. My rheum says it's fibro myalgia. So there's lots of variation. However, our blood tests really do provide a window to the condition, so I have found it really helpful to be able to get copies of the blood tests. Initially though the rheum was reluctant to give me the blood tests. I think she worried about me 'over-interpreting' the results. So there's a lot of factors that will change your experience! Best wishes

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Bev, i have/had foot drop. Its a long boring story as I've had almost 50 yrs of severe Rheaumatoid Arthritis. But when I finally had to have a knee replaced, I woke from surgery with foot drop! I'd never heard of it! I had told my surgeon I'd had some numbness off & on in my foot-- same foot as knee operation. Then my eye got bloody, got finger ulcers, petichiaie rash on body, etc. My rheaumatologist was ignorant about all of this so I fired her & started research. Took me a year to get an appointment with a Kansas University Medical Hospital Rheamatologist who also specialized in Vasculitis. More months go by before I finally get my nerve & muscle biopsy &, yep, I have Vasculitis ( which I kept trying to tell them!) Meanwhile, Bev, my other foot dropped! Now I'm in a wheel chair. Due to reading this site, I knew I must have Rituxan infusions. Doc was hung up on Cytoxin (?) & methotrexate. Not for me... 1 st 2 Rituxin infusions 2 weeks apart & the 2nd foot that had dropped, came right up! Miracle! Also cured the year's worth of awful Colitis I'd suffered due to my RA. But the first foot that dropped almost exactly a year ago, has not come back ...BUT FOR A FEW INCHES & GETTING BETTER DAILY. After my 3rd & 4th Rituxan infusions a few months ago. Neuropathy in the one leg & arms, going away. The high dose steroids "fixed' my eyes, ulcers, rash which Doc gave me before Rituxin. Please, talk to your all's Doctors about Rituxan. Can't say enuff good about it. NO side effects. Marsha/ponywoman

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