EGPA/Churg-Strauss? New Member, recent Diagnosis

[grindhaus]

Hi All- I'm new to the community. is there anyone else here diagnosed with Eosinophilic Granulomatosis Polyangiitis (EGPA)/Churg-Strauss? I received my diagnosis in December 2016 and have been in treatment since. Vasculitis affecting both of my legs, but gratefully seems too be limited to the legs only. Was wondering if this pain/inflammation/weakness/loss of sensation was ever going to improve; will this just take years? Any advise for getting stronger and dealing with the chronic pain? Any advice for dealing with the side effects of prednisone? Thanks in advance.

[Suzym2u Moderator Vasculitis UK]

I am sure others will answer your post and share their experiences. But in the meantime this is the page from the VUK discussing EGPA (CSS). vasculitis.org.uk/about-vas...

[Leonies]

Yep I have just been diagnosed with EGPA (Nov) & am now in remission with 6 weeks Cyclophosphamide IV and now on Methotixate to stop flares (2 weeks) and will reply shortly as my hands have Peripheral Neuropathy and at the moent I cant type well - will answer you fully tomorrow. Cheers

[grindhaus in reply to Leonies]

Thanks Leonies, seems like we are on a close schedule from diagnosis- I did not have to have those meds though. Understand about the hands though! The neuropathy in may hands was minimal and seemed to have gotten better after 1 month of prednisone 60mg, but I still have swelling in both hands and legs and feet. I had to remove my wedding ring, other jewelry and buy some shoes 2 sizes too big to be able to wear. I hope you start feeling better soon!

[Leonies in reply to grindhaus]

Hi again Grindhaus, Sorry I couldnt type more before but I have three fingers on the left hand (thumb,pointing finger and middle finger) that are numb and one of those doesnt bend at all and on the right hand I have thumb & forefinger that are slightly numb. I spent two weeks in hospital and got home in time for xmas. I was given high dose prednisone (1gm) because it looked like my right hand was going numb - it stopped it just in time - I wouldnt have been able to use either hand, at least now I can eat, drink and wash myself with the right hand. My right leg is numb from the knee to end of foot, left foot is numb. I was put on Cyclophosamide infusions for six weeks which also included methyl pred and that put me in remission and to hold me there I am now in Methotrexate - for 2 years (not 2 weeks as I put above). My EGPA was made harder as I broke my left wrist the day before diagnosis - I stood up and my feet were numb and I fell over...and 4 weeks ago I kicked my office chair rollers and broke my left ankle!! As for pain, I have been put on amitryptiline which I take around 4pm when all the nerve pain starts - certainly seems to work for me. My father died of EGPA in 1989 inn the same hospital that I was in, so I amvery happy to be out - the mortality rate then was 3% now its 80-90%!! I also belong to a group called solutions for peripheral neuropathy on FB and will be starting their natural supplement protocol soon. Hopefully it regenerates the nerve endings to grow faster. I also cant drive which means I am stuck at home by myself watching neverending renovation programmes All the best, its good to see we are no alone in the world of EGPA

[grindhaus in reply to Leonies]

Wow! You've had a tough time since November it sure sounds. So sorry about the broken wrist and ankle as well- not fun to have all this compounded together. I'm hoping you get to feeling better fast and your bones mend quickly. I'm sure it will be weeks more before you're out of casts and plasters and all, but do your best with the physios and exercises. I really think it helps my damaged legs and limbs to keep them moving and stretching, even though it hurts. Move it or lose it they say, and it's true. I'm trying my best to live by my words.

Please keep us posted on how that supplement works out.

[Katie18]

Hi Grindhaus I was diagnosed with churg Strauss about 5 years ago and it affected my feet and lower legs. I had severe foot drop in the right foot. It took a year for the nerves to start to grow back. I do still get soreness but that's likely to be due to how the disease effected the shape of my feet. It's so much better than 4 years ago. I took and still do take amitryptiline to help numb any pain at night - that worked better for me than anything else. I also too pregabalin and just paracetamol if it was really bad. Reflexology and accupuncture also helped and I wear steep orthotics.

I have always continued to go to the gym even on crutches to build up the muscle and did lots of swimming and exercises in water which I felt helped me. I've been under physios and a mobility team. Pilates I feel also helped.

I hope things get better for you. All the best Cath

[grindhaus in reply to Katie18]

Hi Cath, thanks for the reply- I'm glad to hear that you eventually got much better- that is encouraging. I was beginning to fear that I would be like this permanently and it was adding to my anxiety and depression. I have gotten a stationary bike and have been riding it 10-15miles most days, to help my rehab. PT is also helping, though I am still very weak compared to 6months ago. I am making some gradual improvements and can now drive the standard shift car, operate my motorcycle (ride, change gears with left foot etc) and ride my bike outside on level trail- none of which I could do a month ago. My PT suggested that Tai Chi would help my strength and balance a lot, but I haven't gotten into this yet.

I am becoming more hopeful and it's great to have others to talk to, who experience similar issues.

[Katie18 in reply to grindhaus]

Hi Grindhaus you sound to be making really good progress already. It's just a matter patience and time I think as we can't make our nerves grow back and they grow v slowly. My experience has been to keep using them which you are doing and that helps - so good luck Cath

[nanaC]

Hi Grindhaus

I was diagnosed with EGPA last July. I spent 12 days in hospital . The disease affected my lungs and also brain and kidneys. I had been having problems with my limbs e.g.cramps and muscle twitching amongst other things before things got serious.

I was also ANCA positive. Do you know if you are? Are you just on steroids or on immunosuppressants as well?

I was originally on 60 mg of steroid as well as cyclophosphamide. Now take 5mg steroid and azathioprine. Unfortunately, there is not a lot that I can suggest with regards to the side effects of these drugs. They affected my stomach and bowels. I remember posting on this site myself at the time. I can only say that things do improve as the dose gets lowered.

I do now suffer with some neuropathy, but it isn't too severe, unlike yourself and others.

I wish you well, and hope that things will improve for you soon.

[grindhaus in reply to nanaC]

Thanks NanaC- I spent about 14 days in the hospital last Sept and Dec separately, before they were able to make the diagnosis. My leg and foot pain was beginning in Dec. and was the reason I went to hospital the 2nd time and was key to making diagnosis. They put me on 60mg/day Prednisone then, and then after many further tests, decided to add Azathioprine and began the taper down of the prednisone, currently at 20mg. The blood test results seem good and eosinophils are back down, but my leg/foot pain remains pretty much the same as it was months ago. My asthma is under control now, no flares since treatment started, I don't think they call this remission yet. I feel reasonably decent, as my organs seem to be in the clear, just in some constant but variable pain and dealing with Prednisone side effects. My hands have significant tremor and shake a lot. I also have significant foot and hand cramping. PT has helped my flexibility and overall mobility, but not the pain unfortunately.

[grindhaus in reply to nanaC]

I forgot to mention that am an ANCA negative.... seemed a little puzzling to the docs, but they said not everyone was ANCA positive....

[ElaineRH in reply to grindhaus]

Hi I was diagnosed with EGPA sept 2017 after 7 days in the Brompton. I am ANCA neg too - as you say this does puzzle them... I have spent the 1st 18months on 20-50mg pred with little effect on the eosinophils. Tried 6 months Azathioprine and had a major relapse with pulmonary infiltrates. I have had very severe asthma for 20+ years and also have bronchiectasis. I have been told many times that I don't get much benefit on oral steroids for my asthma. Have tried 2 other new biologics (Mepo and Reslizumab) both of which I had a reaction to - one was anaphylaxis) the consultant changed me to intramuscular Triamcinolone which did a good job of getting the Eosinophils down but at the expense of my mental health.

They are trying to avoid the chemo route as I was so ill on Azathioprine and I am now on another biologic (benralizumab) which has lowered my eosinophils to zero for the first time. Everyone seem happy but I don't feel any better. My asthma is as bad a ever, my lung function hasn't recovered from about 40% and I have had a constant upset tummy for the last 2 months (which I had immediately prior to the diagnosis.

Will I ever feel well again? Or will I now "live" with the previous damaged caused my the EGPA. (lungs, brain, GI and neuropathy )

I try my very hardest to keep fit (am am an exercise rehab expert specialising in lungs, heart and neurological conditions and also teach Pilates.

Some comment/ words of comfort would help a lot

Thanks

[Hidden]

Hi,

If the pain and weakness are caused by peripheral neuropathy then you may need agressive, remission inducing treatment with the likes of Cyclophosamide or Rituximab to get it into remission. The peripheral nerves take years to re generate when damaged, the trick is to limit the damage in the first place with appropriate treatment. If you have only been prescribed prednisolone then it's unlikely that it will be enough on its own.

[grindhaus in reply to Hidden]

Hi Keyes, I went to hospital within 3 days of onset of leg symptoms- they told me it was good that I went and they started the high dose prednisone right away- said it was preventing further damage to nerves and muscles and organs (though this has affected my lungs as well). But I gather the damage was already done in a few days, because it has not improved since December. However, the symptoms in my hands did seem to improve over the first month.

Cyclophosamide and Rituximab were both discussed as options, but my doc decided to try Azathioprine to see if my condition responded to that first. My situation did not seem to warrant going to the stronger meds since major organs were not affected. The prednisone is being tapered down slowly now, but they tell me I will be on the Azathioprine for a long long time.

[philtw]

Hi

I have GPA and was diagnosed in 2013......steroids are your saviour and the side effects are your last thing to think about......to help counter act steroids i take Calcium, Vit D and Fosavance......let me know if you want any other info.....

I was also diagnosed with PAN when i was 21yrs old and made full recover after 5 years

[grindhaus in reply to philtw]

Hi Philtw- I have been grateful for the Prednisone, as I have had asthma since my teens and have been on it on a regular basis- I know it is the med that saves our lives, no question. However, the prolonged use and high dosage are starting to make me more uncomfortable to say the least. I took NO MEDICATIONS at all 2 years ago, then I started to get sicker and sicker. Now, after diagnosis, I take 2 treatment drugs, 2 asthma/allergy drugs and 5 other meds.... the other meds are JUST to DEAL with the Prednisone side effects: high blood pressure, protonix (prevent stomach ulcers), anti-anxiety, diabetes, Calcium/VitD....

The HBP and diabetes concern me, since these run in my family and I had managed to keep but under good control until the treatment for EGPA began.

Since my blood tests are good so far, I feel as though I suffer more from the Prednisone now than the EGPA (leg/foot pain and weakness aside...)

But don't get me wrong- I feel for the folks who have it worse and just getting the main disease under control is the real issue at stake.

[philtw in reply to grindhaus]

Hi I ve have nasal problems since my teens and wonder if this was the underlying ailments which transpired in 2013.......however since i have been taking prednislone my nasal tracts have been great i can breathe again......although i am aware of the risks........you have to take every step as it comes.....i came off prednislone 5 years after having PAN with no issues i have never taken any time from work and still lead a healthy ! life ! albeit my lungs have suffered over the past 6 months,.......i cannot relapse again......anyway i have a CT scan soon so i can compare last years and see if there are any significant changes.........i already have two coin lesions wth scarring don't want any more.

[Thymery]

Dear all,

I'm new to this chatgroup .

I was diagnosed to have Churg Strauss syndrome last Nov 2016. I have been suffering from Mononeuritis multiplex (peripheral neuropathy ) on both legs (from ankle down to the feet) and my left hand last two fingers.

I had 5 dose of Cyclophosphamide infusion but with no improvement of the numbness and pain on my legs. Doctor suggested Rituximab. There are two Infusions for this. One was on 27 Mar 2017, another one, which was two weeks apart, was on 11 Apr, which was just yesterday.

So far I still can't feel any improvements yet, which I understand that it takes at least a month from the first infusion .

Now what bother me is the painkiller that I was taking called Gabapentin. I have been taking it since 3 Mar. Yesterday doctor just told me that from the bold test done on 10 Apr, my Liver seems to be out of range, meaning mild Liver damaged. Doctor suggested to cut down Gabapentin to morning 300mg one capsule , at night 100mg.

I'm very worry about potential liver damage, but the pain is unbearable that I still need Gabapentin at night to have a peaceful sleep.

Can anyone suggest any form of pain relief instead of taking painkillers especially at night before sleeping. I have tried lidocaine patch , it's help a bit, but the patch is costly, can't use it for long term.

Thanks in advance for any help.

[grindhaus in reply to Thymery]

Hi Thymery,

Thanks for chatting and glad you joined- I am still checking out all options for dealing with the pain in the legs, feet. My pain is ever present, but fluctuates up and down from day to day. Just yesterday I've tried Capsaicin (pepper) cream on the legs, plus 2 Hydrocortisone and came as close to pain -free as I ever had been since diagnosis... However, fair warning, that stuff burns! It was fine on my legs, but my hands burned all day, for the next 16 hours, worse after I washed my hands, multiple times! Found some suggestions online that suggested milk or apple vinegar to take the burn down. It took a few applications on my hands to make the burning quit but it finally worked. Then of course I smelled like Easter egg dye still...

Might need to use gloves next time. This is a cheaper option than the lidocaine patches, but your results may vary. I also have patches, but my pain is all over my left and right legs and feet, so not sure where to put the patch and they say not to use more than one at a time so...

If I find anything else that seems to work, I'll be sure to mention it!

I hope you start feeling better soon and pls also let me know if you find something that works, yourself!

~g

[Thymery]

Hi Grindhaus ,

Thanks for your info. I can't get capsaicin cream in my country here . As for the lidocaine patch, yes, it's very expensive, I tried it at night, it help a bit in the pain, at least I can fall asleep with that,but I didn't try it often, only when the pain is unbearable at night. I cut the big patch into half and put it half on the sole and the other half on top of the foot.

Now, I cut down on Gabapentin by taking 100mg in the day and 300mg at night so as to help me to sleep. I hope this will not caused much problem to my liver. I will only get to know it when I carry out blood test and visiting my doctor in two week time. Looks like painkillers is the better choice for our chronic leg pain problem.

Will update you after I visit my doctor in two weeks time. In the meantime , please take care and continue to exercise as much as you can, this I find will bring my spirit up and I feel good after a good sweat

[Thymery]

Hi there,

I have finished two rounds of Rituximab. First was done on 27 Mar 2017 and second on 10 Apr 2017. Until now, I still have severe pain and numbness on both feet and my last two fingers on my left hand. Can I know how long do I have to wait to see improvement in the pain. I desperately waiting for the day to come...

[grindhaus in reply to Thymery]

Hi Thymery,

I hope you are starting to feel some/any improvement by this time? I'm sorry if you are still suffering

It's been 2 months since my last post on this thread and since then: my Prednisone dose has been tapered to 15mg/day (down from 60mg/day in Jan), Gabapentin 100mg added before bedtime. Azathioprine was upped to 125mg/day. Daily Dulera and Flonase for the asthma/sinus and Amlodipine for the blood pressure. Glucose is a little high, but not yet diabetes, just staying below the mark. The Cushing syndrome stuff from the steroid is unfortunately still present, maybe getting worse.

So far, so good. I'm staying mostly symptom-free, breathing is fine, don't need the rescue inhalers. Blood tests show liver is tolerating all this so far.

I'm happy to report that my pain in my legs is generally improving! I was beginning to think that it was just going to be that way for a very very long time, but it is getting better. I have mostly weaned myself off the daily hydrocodone and just save it for times when I am miserable. I still have the same loss of sensation, tingle-nerve-lessness feeling in both feet, but the constant pain-state has dimmed and only hurts from time to time. If I ride my bike frequently, whether the stationary bike or the real thing, I see the swelling in legs goes down. Less swelling and inflammation means less pain. riding actually seems to be better, more effective and more comfortable to me than shopping/walking/hiking. Not so much weight and impact on my feet with riding. Shopping still seems a bit difficult, the slow shuffle and then standing in queues is not fun. However, I can walk, drive and ride a bike without assistance! I am not in constant pain!

I don't know if that can offer you any hope at all, since your case is unique. Maybe, just maybe, your pain can improve in a few months as well. Maybe it just takes time. I'm keeping my fingers crossed for you.

[Harleyman04]

Exercise keep moving lyrica Celebrex for neopathy and medical marijuana

[Hidden]

I have EGPA/Churgg-Strauss, have had it for over 20 years. My children were young when I got sick. I've managed to live a "normal" life, raise six great children to adulthood with my husband, live in fascinating places all over the USA, & work as a writer, musician and in other music industry executive jobs plus be successfully treated for vasculitis at the same time. I am being treated with Rituxan infusions which appear to work for me. The trick is in preventing relapses. My specialists at a vasculitis center now recommend that I receive Rituxan every six months in 500 mg infusions to prevent relapses such as I'm experiencing now. Treatment protocols change drastically over time - relapse symptoms don't. The pain, inflammation, weakness, loss of sensation do go away during remissions as long as I push myself relentlessly to eat right, exercise, and use meditation & such to promote mental/spiritual well being. I will no longer take Prednisone at all due to the side effects. I sincerely hope things will get easier for you over time.