Newly diagnosed - Vasculitis (Churg Strauss)

[Jakebordercollie]

I have just been diagnosed with Churg Strauss also know as EGPA. Am undergoing some cyclophosphamide infusions, as well as 50 mg of steroids. Any tips on how to cope with these infusions, as anti sickness tablets are not working. Am also worried about hair loss - am losing a lot of hair and have only had 3 sessions so far. My lungs and sinuses have been badly affected. Can anyone please share any tips to give me hope that there is a light at the end of what seems to be a very long, dark tunnel. Much appreciated. Kind regards

[Bremmen]

Hi jackbordercollie I also have Egpa diagnosed 2009-2010 at age 40, had 2 sinus ops and pneumonia it has mainly affected my respiratory system. Methotrexate and prednisone worked well to get my condition under control, my eosinophils currently range 600-800. Normal is under 500. Are you under the best care eg, immunologist? Hospital? I am now at the point in my life where I don't think or worry about it most days this really helps as stress and diet is a major factor for me and getting as much rest as possible.

[ElaineRH]

Hi, I was diagnosed nearly 2 years ago with churg strauss (EGPA) .Mostly lungs (pulmonary infiltrates and Sinuses (2 operations) for me. Some damage in white matter in my brain, some mild vision issues, severe burning pain in arms and legs, some annoying rashes and a very erratic heart (not irregular though). I am soooo tired but funny as it seems I gain more energy by keeping fit. I am a exercise rehabilitation specialist and there have been many papers written on exercise and fatigue....

I am on Triamcililone IM injections as prednisolone didn't work and eosinophils continued to rise to 2500 (2.5) - had azathioprine - didn't help much. I have had 2 biologics but reacted badly to both and due to start another one in 2 weeks time.

My advise- eat well, rest and take some gentle exercise... good luck

[Jakebordercollie in reply to ElaineRH]

Thanks Elaine - great advice on exercise, I can manage gentle walking, as have nerve damage in my feet. Many people say reflexology is helpful - am willing to try anything. Do you have specialists monitor you whilst you are in remission? Appreciate your response. Regards

[ElaineRH in reply to Jakebordercollie]

Hi Jake not made remission yet so I am monitored all the time- have a cardiac loop recorder , 3-4 months ct scan of all organs and weekly blood tests... if all the treatments the high dose steroids are the worse- nearly 2 years without a break.. and very little sleep

[Jakebordercollie in reply to ElaineRH]

Thanks Elaine - what dose of steroids are you on? I started on 60mg and am now on 40mg prednisolone. I hope that you will make remission soon. Regards

[Louizadavis]

Hiya jakebordercollie, I was diagnosed jan 2016 at 36 it was a difficult time being a single parent with 3 very young children, like you I did the cyclo infusions with steroids and methotrexate I’m still taking methotrexate injections weekly which make me feel terribly sick after I dread taking them but I know I have no choice, I found eating straight after my infusions helped loads, I sort of adopted the approach that if I was going to be sick for a few days I was going to stock myself up and it worked, hair loss was also a big thing for me lots of my hair fell out but it has grown back and pretty quickly after the infusions, there is light at the end of then tunnel 3 years on I’m pretty much back to my normal self just half a stone heavier which is impossible to get rid of but a small price to pay. Most of my symptoms have calmed down now apart from constant sinuses issues and I’m still closely monitored by the heart team as it efffected my heart quiet badly before I was diagnosed. It definitely gets easier it seems like a long never ending journey but from someone that’s had been where you are all I can say is stick with it, keep positive it does get easier good luck and take things easy rest when you need to and try not over do things. Louise

[Jakebordercollie in reply to Louizadavis]

Thanks Louise. It must be very difficult with 3 young children - you are incredible ! I am 55 and work in the city. I love my job but realise that I will be unable to return to the fast lane ! Your eating tip really helpful. Thanks for your encouraging words and I wish you well. Regards

[nanaC]

I was diagnosed in July 2016. I had lung, sinus, brain, skin and kidney involvement. i was treated with high dose steroids and cyclophosphamide like you and others, but I also received 7 treatments of plasma exchange whilst in hospital. I was given cyclophosphamide in tablet form ,so I am unable to help with any advice on how to cope with the infusions. I did have sickness in the beginning, but fortuneately for me the anti sickness tablet Ondansetron 4mg worked, although I did suffer with upset bowel etc.

I am now in full remission on maintenance doses of steroid and Azathioprine and Anca negative. So I just wanted to encourage you , as others have done that yes, there is light at the end of the tunnel. I found the first three months on cyclophosphamide were the worst. I did have a little hair loss, but it returned on stopping cyclophosphamide. Also, Being a retired person, I didn't have family responsibilities,. That must be tough.

you don't say where you are being treated, so I trust it is somewhere that is experienced in dealing with Vasculitis.

I send all my good wishes to you.

[bargibar]

Hi I was also diagnosed with churg strauss in 2012 I had cyclophamide infusions but had no ill effects with them or any great hair loss i'm sorry you are suffering and hope it will get better for you. I had some years of steroids and they caused me the greatest problem but now I am completely off steroids and in remission but still taking mycophenolate so there is light at the end of the tunnel however you feel now and possibly will in the future for a while. I hope the future becomes brighter foe you too best wishes.

[Jakebordercollie]

Thanks so much for your response. I am under rheumatology team at the Royal London Hospital. Am anxious to ensure things get under control, as I would love to return to work at some point. You have given me some hope that normality may resume at some stage. I wish you all the best and thanks again for your encouragement. Regards

[Jakebordercollie]

Thanks for your response. Am interested in the plasma exchange. Were you treated in London. I am being treated at the Royal London Hospital and was only offered the cyclophosphamide infusion treatment. Am pleased to hear that you are in full remission and wish you all the very best. Regards

[nanaC]

Hi again Jake. I was treated at Derby Royal hospital, and it was there I had plasma exchange. I don't know anything about The Royal London Hospital, but I have been to The Royal Free Hospital for a meeting which Professor Alan Salama arranged for vasculitis patients for some research he is doing. I think there is a good vasculitis team there.

[cairneyh1]

Hi Jake

After 11 years of attending doctors witch increasing symptoms of allergies, rhinitis, sinusitis, asthma, loss of smell,taste and hearing I was in so much pain in my arms and legs that I presented myself at QEUH A&E dept. After several days I was diagnosed with EGPA at the age of 55. Many of my organs had been damaged including liver, spleen, left eye, nerves and muscles in my legs and right arm and hand. Above all, my heart was damaged and I had to have a defibrillator fitted to my heart. The day after it was fitted I was allowed out of hospital - 5 weeks after going in. I have been a very fit man all of my life and played tennis 3-4 times and golf1-2 times per week as well as going to gym. I found that I was very tired but keen to regain my fitness. On pred - originally 80mg now down to 6mg and 125mg of azothioprine after 6 infusions of cyclophosphamide. I was off work for 6 months recuperating but this allowed me to walk and go to the gym regularly and rest appropriately. I had an 8 week phased return to work and have been working full time for 17 months now. I can play tennis and golf but still can’t hold the racquet or clubs properly with my right hand. I get tired more than I used to and don’t push myself to do as much cardio exercise as as I did previously. The nerves an muscles in my right hand and arm were damaged to an extent that I could not bend my thumb and 2 fingers. After 2 years there is a massive improvement. Only now do I feel that I will get back to somewhere near my previous fitness levels despite being very positive throughout.

[Jakebordercollie in reply to cairneyh1]

Many thanks - you certainly give me some hope that there is indeed some prospect of returning to some form of normality ! When were you diagnosed? I wish you all the best.

[cairneyh1 in reply to Jakebordercollie]

Hi

I was diagnosed in queen Elizabeth hospital in Glasgow. I have blood samples take every 4 weeks and see a rheumatologist every 3 months to check how things are going.

[Jakebordercollie in reply to cairneyh1]

Thanks. Hope that things continue to improve for you. Good luck !

[Katie18]

Hi jakebordercollie I was diagnosed with Churg Strauss 6 years ago. Initially I had 6 sessions of cyclophosphamide & then was put on aziathioprine which I’m still on and tolerate OK. I found the cyclophosphamide tough - my best advice is to just sleep and rest for a few days afterwards. Thd anti sickness tablets worked for me. I did lose hair but it grew back thicker and better.

I was also on high doses of prednisone which I have painstaking reduced. Unfortunately they did interfere with my adrenal glands and so it looks like I’m going to be on a low dose of hydrocortisone long term.

I have nerve damage too and couldn’t walk at all for a year - but they gradually grew back although imperfectly. I can walk now, the pain has reduced and I take amytryptiline at night which was the only thing that helped alongside reflexology.

I went back to work but reduced my hours. I pace myself and take care with my diet & exercise. I lead a reasonably normal life just a bit slower - hope that gives you encouragement. You need to be very patient with the disease & meditation keep asking your consultant questions. Good luck

[Hidden]

Hi, I'm a cancer survivor and Cyclophosphamide was part of my treatment. I lost ALL of my hair, even hair up my nose, and everywhere else. Have they told you to have plenty to drink whilst having the infusion? Cyclo can cause bladder problems. My treatment which included 2 other drugs, lasted 5 months and all my hair came back. Can't help with the sickness as I never suffered from it. I was given metoclopramide just in case, and you have to take it before you start to feel sick, as it is easier to prevent the sickness than to cure it. Sorry I can't help more.

[Jakebordercollie]

Great advice and encouragement, thanks Katie. I wish you well.

[Jakebordercollie]

Thanks for the tip to drink as no one told me this. Am starting to have bladder problems and do take mesna tablets before and after infusions. Dealing with side effects of cyclo and steroids certainly adds to all the stress. Will try meditation 😃

[AmyS1]

Hello hair loss can be a problem. Try elevive hair thickening shampoo.

[bumble05]

I have had churn Strauss for around 6 years now. Also currently suffering from bad sinuses and always coughing probably from the sinitis . I'm only on predesilone and various inhalers now. Including nasal ones. You will learn to cope with it but it can be very exhausting at times. Xx

[Jakebordercollie in reply to bumble05]

Thanks so much - encouraging ! Am finding the cyclophosphamide treatment very difficult and am also on predesilone. Are you working? I'm hoping to return to work at some stage xx

[bumble05]

I'm working in a physicaly demanding job. I get out of breath at times and start coughing and find it very difficult to walk up hills because of breathlessness but I am determined not to let this beat me. For now anyway.