Vasculitis UK

Churg Strauss Vasculitis

Hi everyone,

I have had the above for 11years and would like to hear from others how they have managed this condition as it is extremely rare. Have had two cycles of chemo, on daily prednisone and weekly Methotrexate.

Still quite active with daily walking despite constant pain in feet. Just lately my hands have been affected

Love to hear from you

Astrid Joseph ( Australia )

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I just received Churg-Strauss diagnosis in March of this year... so I too would love to hear from others on how they manage . Has any taken the drug azathioprine?any side effects?

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Hi Astrid and Tunabird,

I'm a recent diagnosis of EGPA (Dec 2016) so I feel like a noob- but I can still relate to the less-than-fun symptom list! My lungs and legs/feet were the most affected- 60mg daily prednisone for 3 months brought things under control, been tapering down and just went to 10mg. Keeping fingers crossed that I won't see a return of symptoms. I'm still on inhaled corticosteroid and probably will be on them forever for the asthma. My doc had suggested we try Azathioprine to help reduce the oral steroids without going to Cyclophosphamide or Rituximab since other major organs were not affected currently. So now I'm on 125mg of Azathioprine daily, if I break up the dose into 3 parts during the day and take after a meal (a real meal, not a snack) then I can tolerate it. If not taken with enough food and water, it can make me feel rather ill/nauseated. Not everyone can tolerate the azathioprine- I have bloodwork every 8 weeks to review the CBC with differentials (eosinophil levels), liver and kidney panels to make sure my organs can handle it. I understand that I will be on this for a long while, so long as my body can hack it.

But so far, so good- 9 months after diagnosis I can breathe and walk almost normally. I still have persistent neuropathy in legs/feet, especially the left one, but the overall constant pain in the legs and feet has improved a LOT in the past 2 months, to the point that I no longer take daily meds for pain. I still have the occasional sharp lightning pains in the leg/foot, but a few months of gabapentin 100mg at night, seem to have helped this also.

Side Effects: there are many! although I think most have to do with the prednisone and they are getting a little better as the dose reduces. Cushing Syndrome still a problem, I've ballooned to unrecognizable and uncomfortable potato status. In the past 3 months I've started to have really sensitive teeth- to cold temps. This doesn't seem a typical prednisone side effect, but can't hardly rinse with regular tap water and def not bite or chew anything cold- so not sure if it is an Azathioprine side effect. I also have a persistent eye problem, like a low-grade conjunctivitis- been seen by 4 eye specialists, they tried all the treatments for bacterial, viral and allergic conjunctivitis and I still have inflamed and irritated corneas. Not sure if this is due to vasculitis or a side effect of one of my meds.

I try to stay active as much as possible, though fatigue seems to still be a big issue. After months of PT, I am walking so much better and building up strength again in the legs. Using the stationary bike helps and I am returning to mountain biking and motorcycling, albeit very cautiously and in small amounts. Biking is easier than walking/hiking- I have not tried running yet, generally don't do that unless chased ;-)

I am willing to chat more with more details if either of you want- you can message me directly so we don't bore the group!

Stay well, best wishes for feeling better-

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Hi Astrid,

I've had Churg-Strauss for 11 years too! Now, newly renamed EGPA, I think there has been new research opening up different outcomes depending on remission history and whether you're ANCA positive. I'm ANCA negative and had severe heart and lung failure in the initial stages. I was on prednisone for 2 years and have been on mycophenalate for 10 1/2 years. My daily life has improved significantly in the last 6 months as I have had better pain management [using Meloxicam for hip pain and nortriptalin at night for fibro pain]. Also, I retired early and the reduction of stress has really helped. Now, I am tapering the mycophenalate [aiming for one x 500mg a day, rather than the two a day regime of the last 10 years].

I'm in Canada and we seem to have slightly different treatment practices here. I've not heard of anyone getting chemo - rather, the mycophenalte is used as a chemo-type drug. I don't take methotrexate - my liver couldn't take it.

We can talk more if you want. Best wishes, Karen

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Thank you for your reply Karen. I was diagnosed with CSS 11years ago after many tests which had no conclusive results. Finally, a live nerve was removed from my ankle and this, after several tests proved to be CCS. Initial alert that something was very wrong was firstly dropped foot followed by extremely painful electris shocks through my legs, painful feet ( hardly able to walk, in fact, seemed to be walking on shards of glass ) Initial treatment 60 g Prednisone daily tapering down after one month. Cyclophosphamide followed and felt really well after treatment. In remission for about 2 years after that but had to have second round. Much more to share if you would like to chat. Best wishes, Astrid ( Gold Coast Australia )

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Hi Assie, I would like to chat more. It's been very difficult to find someone living with CSS for so long. I was lucky in that I didn't get neuropathy or foot drop at any point. I got a lot of other stuff though. My initial treatment was 100 g Prednison and it took two years to taper fully. My Rheum was very conservative to say the least. However I tapered to about 60 at about 3 months and then after Methotrexate didn't work, so I use cellcept as a support drug. I've been entirely off prednisone for the last 9 years and just this year, I've begun to taper the cellcept [really slowly]. My doctor says the disease is stable and the aim is to end up with 1 tab a day of cellcept [I've been on two]. I actually wrote on this site in Sept looking for other long term survivors as I was getting depressed by the amount of drugs, fatigue, sleeplessness and pain from fibro-myalgia. Do you have these kind of ongoing symptoms when you're stable/in remission? What happened after your 2nd round?

I'm not sure how we can change this to a private chat so we don't bore the rest of the group! Thanks, from Cobourg Ontario!

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Hi

I was diagnosed ANCA positive EGPA in March 2016. The treatment followed a fairly well prescripted approach of Cyclophosphamide for 12 weeks in conjunction with 60mg per day of Pred. I was then given Azathioprine but within days my body was rejecting. They let me rest for a few weeks then tried again, but same problem. In Dec they gave me my first dose of Rituxmab. This seemed to help but once my pred. was reduced to 7.5mg, I started to feel unwell. In June 17 I was given another does of Rituxmab. This time, I stated to feel a lot better a lot faster, albeit back on 12.5 mg of pred. The real test will come as I taper the pred back down to 7.5. I am hopeful! One aspect of this disease I am now very familiar with are the symptoms. This is really helpful as I can call my consultant whenever I start to feel the symptoms returning, and bloods etc are readily taken and analysed.

Interestingly though, throughout my last relapse my bloods were excellent and did not show any sign of inflamation (despite feeling awful). My consultant said that this is often the case and the patients symptoms are their best guide on what to do next. I hope this provides some useful input for others.

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I was diagnosed with CSS in 2004. Treated with cyclophosamide initially but had an allergic reaction to it. Lots of pred and azathioprine ever since. Now down to 5mg pred and Azo but recently developed a new symptom.

Loss of feeling and pain in my feet. Toes feel as though they are in sponge. Not sure whether this is a vasculitis symptom? Been to go and he is asking for advice from rheumy. Any ideas welcomed.

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Hi There,

Loss of feeling in feet, painful to the extreme, loss of feeling in legs but still walking daily as feel better when active. Pain is constant so might as well try to keep limbs mobile. Hands recently affected with electric currents extremely painful. Back on 20mg Prednisone daily, 25 Methotrexate weekly and daily megafol. Life is still good as I am blessed to have family close by, The ocean is just 5 minutes from home and friends offer support and love. Best wishes, Astrid.

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Hi there

I was diagnosed with CCS in 2012 and treated initially with prednisilone and Methotrexate. Prednisilone was tapered after a year and I have taken Methotrexate weekly with Plaquenil daily for the last 5 years. Chemo never mentioned thank goodness! I now live in France and the specialist here has taken me off Methotrexate and plaquenil, as I am symptom free. What joy! And so far so good....only two months so far

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Hi there,

Wonderful that you are now off all medication. What joy to be symptom free so live life to the full. You are blessed.

Best wishes,

Astrid.

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Hi Tunabird

I was diagnosed with churg Strauss about 5 years ago. I had 6 rounds of cyclophosphamide, v high doses of prednisolone tappered down v gradually and I am still on azathioprine.

I suffered severe foot drop initially in one foot and nerve damage in both feet. It took a year for the nerves to start to grow back. I can now walk but my feet are not in perfect shape. They are corrected by steep innersoles & I may have foot surgery at some point. I take amitryptiline for pain at night.

I have been left with asthma and am trying to reduce the inhalers I take so that my body's natural steroid system will kick in again. As I've been on high doses of steroids my body's immune system doesn't work properly and so I take hydracortisol which is about the equivalent of 2mg of prednisolone. I am no longer on prednisolone but still take aziathiiprine with no obvious side effects

I had a relapse after 2 years probably due to coming off steroids and reducing aziathioprine too quickly. This was treated with high doses of steroids gradually tapered.

I work part time, lead a reasonably normal & fulfilled life apart from dealing with more fatigue than usual, chest infections in the winter & foot pain.

I have posted a link to a video I made about my condition on this site previously. It was to help a major pharmaceutical company with research into churg Strauss, hope that helps.

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Thank you!!

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Hi Tunabird,

Just read your post. Very similar to my initial symptoms and treatment. I shall write more when I get the chance but in the meantime, enjoy life and make the most of each day.We have much to be thankful for 🙏 Astrid

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