Churg Strauss

Thank you for letting me join group........ waiting news as to do i have this form of vasculitis.......... keen to know if diagnosed following recent ct and skin biopsy what maybe ahead? Having constant pains tingling legs left arm and skin rash flares........ wheeze blocked nose, nasal pain and blood protein leucocytes in my urine............ CSS on clinic letters

9 Replies

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  • hi Susie I do sympathise as Im currently in hospital with a flare of CSS 3 years after being diagnosed.

    Its difficult to say to you exactly what comes next as all patients. seem ti vary in their symptoms and so treatments - but there are trends.

    I like you suffered chest symptoms and allergies like sinututis but I also sufferred bad nerve damage in my right foot and lower leg and some in my left leg but luckily for me that improved.

    You will have lots of tests to find out what has been affected and hopefully wll have caught the disease early. Ask lots of questions of your consultants and this groupnis very useful for getting advice and support around specifics. You will probably be given high doses of steroids to reduce inflammation and infusions of cyclophosphomide then a longer term drug such as aziathioprine to stop your immune system from attacking itself.

    it is all confusing and can be scary as these diseases are so rare but hang on in there as vasculitis uk can give you excellent support and has a good website - the mayo clinic web is also good. It is a disease that requires patience but i do hope they get you on the road to recovery as soon as possible. It is still possible to have a good quality of life with CSS once the disease is under control. best wishes

  • hi Susie I do sympathise as Im currently in hospital with a flare of CSS 3 years after being diagnosed.

    Its difficult to say to you exactly what comes next as all patients. seem ti vary in their symptoms and so treatments - but there are trends.

    I like you suffered chest symptoms and allergies like sinututis but I also sufferred bad nerve damage in my right foot and lower leg and some in my left leg but luckily for me that improved.

    You will have lots of tests to find out what has been affected and hopefully wll have caught the disease early. Ask lots of questions of your consultants and this groupnis very useful for getting advice and support around specifics. You will probably be given high doses of steroids to reduce inflammation and infusions of cyclophosphomide then a longer term drug such as aziathioprine to stop your immune system from attacking itself.

    it is all confusing and can be scary as these diseases are so rare but hang on in there as vasculitis uk can give you excellent support and has a good website - the mayo clinic web is also good. It is a disease that requires patience but i do hope they get you on the road to recovery as soon as possible. It is still possible to have a good quality of life with CSS once the disease is under control. best wishes

  • I hope that you are home soon. Thank you for your reply. I have nasal polyps also and wheeze from chest, no skin rash this week but my left arm and both legs pain and tingling all i want to do is sleep. When you are waiting for news of biopsey should you push yourself and continue to work or should you give in and rest, i have no idea at present how to self care.

  • if you have suspected CSS surely your GP or consultant will sign you off work. You need to rest and take thngs easy. Ask them about relief for nerve pain. i take amitryptiline at night which helps me sleep. you dont sound well enough to be at work to me. your consultant should be keeping your GP informed what is going on and your GP can give you a sick note. Ive just been advised to take at least a month off after this flare.

  • Hospital for ent appt again tomorrow........... thanks for your kind words....... need to continue to work as i have to pay mortgage and bills....... you take care... ( i feel so unwell...... bit weepy again)

  • Dear Susie b,

    I can't add much, to what has been said above, except this;- A very 'hearty' welcome, to our group/forum.

    As, I'm sure that you have found out by now, we don't bite (well not too hard anyway!). Seriously though, you will find us a friendly 'lot', with an excellent 'collective knowledge'. John, and Susan, Mills who were both founder members of Vasculitis UK also founded this 'forum', about three years ago (someone will correct me here, if this is too far wrong). John has WG (Wieners Granulosis-I think that's the right spelling?) All of us DO have Vasculitis, of various different sorts, often, like me, overlapping. The important 'thing' to remember is that this IS as much a 'support group' as it is an information exchange. I could add to that list counselling service and even, very regrettably, bereavement service too.

    Please, please don't be, in any way, afraid to ask us anything-it is very, very much what we are here for. You are NOT being silly/stupid/idiotic even if the answer was 'staring you in the face', this 'happens' to us to!

    I hope that I haven't 'rattled on' too much-sorry! Once again welcome, to our 'fold'.

    Very best wishes, Happy New Year 2015 Susie.

    AndrewT

  • Thank you for your reply/support........ i feel crap have done for soooo long now..... sooooo many appts and i feel so so guilty getting time off work..... im a nurse yet none of my fellow health workers have heard of this illness

    let alone understand how ill i am feeling.,..... when i may look ok....... i am scared tooo. as how am i going to keep my job in Nursing when my legs swell by lunchtime if not sooner .... i cant sleep due to being woken unable to breathe...... due to chest and nose ....... oops i just feel unwell and the pains tinglinfg just seem to be worse since november with no relief....

  • Hi susie

    Try not to worry about your work, I too work for the nhs but not in a clinical role, and I have been able to go back to work again after five months off, although I reduced my hours slightly.

    Do you have an occupational health team that you can get in touch with - they can help support you.it maybe that you reach them through HR. Your consultant should be sending your GP copies of your results and what's happening to you - and you should get copies too which you can take to your line manager and occupational health. It is difficult as no one has heard of the disease Vasculitis or knows about the affects - but it's up to them to find out about it and what support you need - there is lots of useful info on Vasculitis uk web you can look at.

    Make sure you have regular meetings with you GP and share any if your work worries with them - they can help support you and write sick notes etc

    You hopefully are entitled to sick pay for several months you can ask your HR team for advice. Don't feel guilty about not working, you need lots of rest at the beginning and time to adapt going to lots of appointments etc - talk to your consultant and GP for advice on how much time you need off. I took 5 months off and them went back on a phased return over two months - I now work 28 hours a week including one of them at home. I do realise that I'm lucky to have a supportive employer - but the nhs should support you too.

    The steroids will probably be making you feel weepy - they do me too - but as your dose comes down it will get less.

    I do sympathise as is is really touch dealing with such a complicated disease and all those changes it brings. And it is so time consuming sorting it out. I actually went for counselling referred by the occupational health team and my GP. to give me extra support so it is worth looking into that too. Just don't be afraid to ask lots of questions and try to share everything you are feeling with your doctor and consultant - and not just clinical things. Then they can try snd put things in place to help you. CSS does bring so many changes initially for you initially but you can get your life back. It's worth looking at reflexology, massage, yoga etc to help you relax especially in the early days. Hang on in there, and perhaps have a chat with the Vasculitis helpline. You can also join the support group that's nearest to and go along and ask as many questions as you want. All the best

  • Dear Katie 18 thank you for your informative reply. I work for a Hospice as a specialist nurse like a macmillan nurse...... i get results from skin biopsy Monday 12th Jan ct shows evidence (likely) which type im not sure although reumatologist has put CSS on clinic letter. I have been in a constant flare for 3 mnths if not longer on no meds yet.......... i take over counter benadryl and paracetamol. Await ct scan after this wks ent appt, I work 4 days so just have to keep going as I dont know whats next. 9 appts in the pipeline for breathing tests skin ct's reviews............. its mind blowing. Colleagues at work dont understand and i feel a burden on the team.......... i will seek out Occ Health....... Take Care All ... x

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