I have been diagnosed with Churgg Strauss vasculitis. I am 57 year old male, who until March 2016 was very fit and healthy. So far, I have been lucky and the disease does not appear to have impacted any major organs. It has however, left me with muscle fatigue of the major muscle groups (Legs, arms, shoulders) and continuing headaches. I am being treated with cyclophosphamide and tapering prednisolne. The cyclo is a 12 week oral course and I am 4 weeks in, but not seeing any improvement. Can any one tell me how long it generally takes before the cyclo starts to work? Also, if anyone has experienced muscle fatigue due to churgg strauss, did their muscles repair and return to their previous strength and stamina?
Thanks in advance.
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sealives
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I have MPA which is a small vessel vasculitis similar to CSS. It took me a good year to get back to somewhere near normal. I had physio which helped enormously. The improvement is so small you hardly notice it until you look back and think 'I couldn't do that last year'. So yes you do get your strength back.
I still get fatigue now and then but I am 10 years older than you!
Thank you Lynne, that is encouraging. The problem, as I am sure everyone knows, is that there is no straight answer to the questions I raise with the consultants so it is good to hear from someone who has experience. I won't sell my mountain bike yet then!
Welcome to the group sealives, sorry you have to be here..... but everyone is very helpful and friendly and there are members in the group have CSS (EGPA). The VUK website have a page about CSS. vasculitis.org.uk/about-vas... co written by Dr Thomas Jones (Wessex Research Fellow) Respiratory Department, Portsmouth Hospitals NHS Trust, supported by Professor Anoop Chauhan (Respiratory Consultant and Director of Research and Innovation) Portsmouth Hospital NHS Trust
My husband John was diagnosed with Vasculitis at the age of 57 but a slightly different type called Wegener's Granulomatosis. John was also very fit and healthy before diagnosis and had only been to see the doctor twice in his whole working career!
Could I ask where you are seen, only because CSS is extremely rare, you are probably only 1 of around 1,000 diagnosed with CSS ( EGPA ) Eosinophilic Granulomatosis with Polyangiitis here in the UK.
It could be the Oral cyclophosphamide is not powerful enough to get the CSS under control and you may need Cyclophosphamide IV ?? The treatment for CSS can vary depending on how severe it is or what organs maybe involved. If you want to talk to John anytime, his email is john.mills@vasculitis.org.uk
Thank you for replying to my post. At the moment my CSS is being managed by Dr Jo Taylor of Dorchester Hospital. She is a nephrologist, also specialising in management of immunosuppression. I ended up in Dorchester because during diagnosis I started to suffer an AKI. Fortunately, a massive dose of steroids saved the day. I am seeing a consultant on Thursday (a bi-weekly event) and we will see what the bloods have to say. Thank you for John's email address, I may well contact him post Thursday.
Hi, unfortunately auto immune illnesses in general cause fatigue. I have found that the best thing to do is give into it and build my life around the new me, although it is exasperating if you have been used to a fit and healthy life in the past.
Also you can get muscle fatigue when you reduce the prednisolone if you do it too quickly I have found. I don't know what dosage you are on and how fast you are reducing.
That is good advice - thank you. Not knowing what my capabilities are likely to be, and in what timescale is causing me some anxiety. As I am sure you will understand, it impacts all areas of life including return to work (when, doing which job, full/part time), exercise, what physical strength and stamina am I likely to have, predisposition to picking up infections (My job entails a lot of international travel), relapses and a host of other concerns. I expect only time will tell!
As my CSS is not responding to the cyclo at the moment, I am frozen on 40mg prednisone per day. That said, the muscle fatigue was one of my symptoms immediately prior to diagnosis, so I expect the CSS has done some vein damage along the way.
I carried on working, but you do need to pace yourself, it is really a matter of trial and error I found, I suppose there is no magical solution unfortunately. Also the steroid side effects don't help either, but you may be lucky and not get any.
Welcome to the club. There must be something about the number 57. I was a fit and healthy 57 year old male until I was diagnosed with MPA vasculitis in 2012. It was mainly my kidneys which were affected and it sounds like your kidneys have been affected as well. One thing you will quickly find out about vasculitis is that everyone is affected differently. It is therefore very difficult to define a general prognosis. Cyclosphosphamide works well in most cases but with some people it is not as effective in getting the immune system under control. I was treated with cyclophosphamide infusions as opposed to orally. It more or less did the trick although I remain ANCA positive. There are other alternative drugs which can be used such as Rituximab for your type of vasculitis.
Muscle fatigue is very common with vasculitis and general fatigue is something you are likely to experience even after the disease has been knocked into remission. l experienced a lot of muscle cramps as well during the early stages of treatment. You need to set your aspiration as returning to your normal fitness, even if you might not get there. It's then a case of gradually pushing the boundaries over time to see what you can do. However don't over do it (although I am probably the worst person to lecture on that subject). I am one of the lucky ones where I can do most things I could do before vasculitis but my energy levels can be very up and down.
Thanks all for the information and an interesting discussion. I am a 61 year old female diagnosed with MPA in October 2015. The onset was vey subtle and the disease didn't really manifest until a bout with nephritis last fall.
Four rituxan infusions have helped greatly and seem to have the disease at bay. I will be having four more (once per week for a month) beginning next week, as the standard protocol my rheumatologist follows.
I have felt my energy returning and am feeling better. But I am fascinated that even those enjoying remission still experience fatigue. I recently began carduiopulmonary rehabilitation to get back ino shape. Was doing well until pushing it too hard last Wednesday-extreme soreness in legs and fatigue is the price I paid for trying too much too soon. Obviously I need to let the therapists know and make adjustments to the program.
It does seem that recovery from this is one step forward and three steps back. Has that been your experience?
I too have CSS & was diagnosed about 4 years ago aged 48. The disease did damage my peripheral nerves which led to severe foot drop but the good news is my nerves did grow back although not perfectly but I can walk now.
I think whether you alter your working habits depends how your disease affects you. I was off work for 5 months then went back at v reduced hours increasing them gradually. I now work 28 hrs a week compared to my previous 32 but I do tire more easily & feel stress more keenly. My advice would be to take the time you need to recover and see how it goes.
My treatment was really high doses of steroids through infusion then gradually reduced, I have 6 infusions of cyclophosphomide and im on aziathioprine to keep the disease under control. I come under a rheumatology consultant.
I was a fitness fanatic & i did what I could throughout my flares and i think that helped me. I still go to the gym regularly I think you should keep on to that mountain bike but do what you can and build up gradually. I think the best way to keep your muscle strength up is to use them however you can - for me it was swimming as I couldnt walk.
Good luck with it but do remember its a serious illness and you probably will have to make some adjustments certainly initially
If it helps I see a specialist vasculitis consultant in manchester Dr Bruce who told me CHurg Strauss usually hits people once badly then if you get the disease under control you start to recover. Some types of vasculitis are much more unpredictable. if you dont feel you are getting the help or teeatment you need from your clinicians get some advice from John at vasculitis uk on some specialists near to you. Im under rheumatologist & respiratory team at my local hospital Airedale but see a more specialist team once or twice a year at manchester royal hospital. i also have a good GP practice & used to insist on seeing the one that understood my condition best. Good medical advice is essential dont be afraid to swap clinicians
I too have just been diagnosed with churg Strauss. It hut me suddenly went to bed able to walk and woke up with no use if my legs from the knees down. After a month in hospital and introveinus I'm on cyclophosphamid Introveinusly every 2 weeks for 6 sessions for your and then going onto oral. I am now just able to walk although my legs give me a lot if pain. But the coldness has now gone which is s bonus I still have the numbness (sock) feeling though. I am hoping to get full use back but my consultant had said that the nerve damage can be permanent. I have started using kinesiology tape on my calves though and it seems to help.
Sorry to learn that you have CSS. I am happy to comment on my experience so far with the treatment etc. For the first 6 weeks I was on 40mg Pred. and 100mg cyclophosphamide (oral). There were many days when I felt as if my symptoms were no better than when I was diagnosed, so I spoke with the consultant and they changed my oral dose of Cyclo. to 100/150 on alternate days. About 2 weeks later, I felt as if I had turned a corner and this was indeed reflected in my blood test results with all the inflammatory markers reducing. Whereas before I had roughly 50/50 good/bad days, the balance is now more like 70 (Good)/30(Bad) and improving. My energy levels and stamina are also getting better although I still need around 11 hours sleep.
I am back on 100mg Cyclo per day and tapering Pred to 20mg over the next 4 weeks.
I should stress that I consider myself lucky in that during the diagnosis phase, it was only my kidneys which took a hit and they have recovered well, albeit 20% less effective than they were; my other organs are in good shape at the moment.
I still get fatigued, particularly muscle fatigue in major muscles (quads, shoulders), which is stopping me cycling at the moment, but I remain positive that as I get closer to full remission, this will improve.
In summary, it does take quite a while to get this under control so be patient (not one of my virtues) and expect good/bad days to begin with.
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