Would You Say Churg Strauss a Syndrome with Cardiomyopathy is Classed as a Severe illness?

[Rowmarsh]

I am in the process of completing my medical retirement application and would like to gauge the opinion of whether CSS with cardiomyopathy is classed as a severe disease. Any thoughts would be appreciated.

[Suzym2u Moderator Vasculitis UK]

I would say it is and also very rare too.

Susan

[Cinders_999]

Definitely

[Hidden]

Definitely Rowmarsh. Have your Consultants supplied any info to your work? The important things would be if there is any permanent damage, your prognosis, a recognition of your symptoms and how they affect you on a day to day basis and what the progression of your illness will be.

Good luck.

[Rowmarsh in reply to Hidden]

Keyes

No my consultants cannot supply any information directly to HR about me but I have sent a copy of the discharge summary to my line manager. Trouble is nobody can understand the content. My union representative said that the medical retirement application has all the consents needed for the consultants to write and send their reports. Both are fully supportive if my application.

[SusieMC]

I got medical retirement from teaching with undiffertiated connective tissue disease with paroxysmal atrial fibrillation. I would think you should definitely try with a more definite diagnosis than mine. Good luck.

Sue

[SusieMC]

I should have said I did have the full backing of my GP and rheumatologist.

Sue

[AndrewT]

Without a doubt, serious indeed!

[Hidden]

Hey Rowmarsh, I'm don't have a strong enough opinion or understanding of your conditon to be able to answer your question, but I would say that if you are considering retirement then the illness is severely impacting on your life. My advice to anyone filling in a medical questionnaire is to always write about how your illness effects you on your worst days, even if that isn't all the time. Compare the reasons why you want/need to retire and the impact the alternative would have on the quality of your life to help you focus on your response to each question. Ask someone you trust to read through the form before you submit it to make sure you haven't omitted something you think is obvious. Don't assume the person who receives the form has any medical background as sometimes there is a score matrix for the initial assessment. Good luck and best wishes.

[Hidden]

I'm curious how many of us suffer from Cardiomyopathy and other cardiovascular diseases along with V...? Good luck with your application form. Sorry for going off-topic. x

[Rowmarsh in reply to Hidden]

Fern tree

Well if you are ANCA negative with Churg Strauss then you should be investigated for heart involvement. I have/had (stopped now through ablation) an irregular heart rhythm well before CSS started yet my hospital never kept an eye on the cardiac side. Since being at the Royal Brompton they have diagnosed and treated the damage but it is too late now, only a regime of heart strengthening and time will tell if things improve. The Brompton mentioned that had I been referred in the early years I would have been monitored for cardiac involvement. Local hospital should deal with local general conditions but vascultis is in a league of its own and needs first class specialists.

[Hidden in reply to Rowmarsh]

Thank you so much Rowmarsh. I appreciated your forthcoming and helpful comment. The local A & E consultant said exactly the same..which was in 2014. I keep hearing about RBH over this site. They must be excellent. I'm grateful of your most important advice. Best Regards,

[Rowmarsh in reply to Hidden]

Since being referred to the Royal Brompton in Lobdon I have become a hospital bore and cannot stress to everybody here that the teams are at the top of their game in terms of research and treatment. The consultants are passionate about patient care and will work hard to find out the problem. In hindsight I should have been referred in 2007 but I trusted my local hospital. The Brompton want difficult cases to be referred to them to help you and also for research.

[Hidden in reply to Rowmarsh]

Thank you so much Rowmarsh. Posts like this can truly save people's lives. I have been going around in circles myself since a few years ago.

It would be so interesting to find out how many V patients are currently being treated at RBH who were dismissed else where. I moved in 2013, I noticed the local cardiology wasn't helpful at all. Once I was blue lighted to A & E and was told that many patients are struggling to cope with their cardiac related issues in the area by the ambulance staff, who was concerned about me. He said that his workload increased thanks to patients not getting treated properly under Cardiology ending up relying on emergency!! I was told to go to the London hospital by A & E consultant rather than wasting more time locally (mentioned earlier). I did mention these to GPs.

I asked for a copy of my ECG results and there were issues though the consultant didn't want to deal with me. I went back to my GPs. The difficulty has been no recommendation from other patients who have V. These days, I'm more and more reluctant to see someone recommended by other drs (no matter how helpful these drs mean to be). Usually, drs recommended by other patients tend to work out much better. Thank you for all your help and care for other patients. Wishing you well.

[Rowmarsh in reply to Hidden]

No problem i just dont want others to go through the same way because certain doctors think they know everything about CSS vasculitis. My consultants at the Brompton told me that CSS is one of the rarest forms of vasculitis and it needs to be diagnosed quickly and treated the same. They have £5 million MRI cardiac scanners there so they are serious about the treatment. You have the right for a referral to there. I was too polite for ten years because I thought my local Kent hospital was on top of the problem. Now, my politeness is still there but I let everybody know if I'm not happy with the treatment. God I sound self righteous!

[Hidden in reply to Rowmarsh]

Rowmarch

What a Great post..!! Funny, the A & E consultant I saw here locally in 2014 said about cardiac imaging and other diagnostic modalities available in London which I wasn't aware of. And you are pointing these out over this helpful thread. I wondered if this dr knew what I was going through.

Looks like my GP, who previously left the surgery for good, returned only for a short time only to tell me that she's leaving again. I remember you were going to see a new GP in your previous thread as far as I remember. Hope your support has improved since. You are RIGHT..As Susan @VUK said, being pushy is a necessary quality worldwide...

Another thing I was curious. How many people have had a whole body or organ specific PET scan for V or autoimmune disorders. I saw someone posting she was going to have this on the NHS. Certainly, PET scan seems to be more sensitive and pick things up that standard MRI wouldn't have. But I digress Thank you so much Rowmarsh, bringing this cardiac aspects of V up, which is immensely helpful to many of us. 5^ Best wishes,

[Hidden in reply to Hidden]

Hi ferntree,

All the auto inflamatory diseases such as RA, Lupus, ankylosing spondylitis, Vaculitis etc predispose the patient to cardio vascular disease in general. Specific types of Vasculitis, such as CSS, increase the risk in specific ways. The heart doesn't like inflamation.

All Rheumy's should be giving patients general lifestyle advice ( don't smoke, don't drink to excess, take regular exercise, have a healthy diet etc ) but in practice I don't think it happens. Unfortunately prednisolone increases our cardiovascular risk due to weight gain and I think it can raise the cholesterol as well.

[Hidden in reply to Hidden]

Thank you so much Keyes. That is so true. It's So helpful to hear where other posters are being treated and under whom. Even if we have enough info and understanding of V, we wouldn't get anywhere without that specialist, who will try to help the patients.

I can't imagine anyone with any serious cardiac condition will insist on working particularly if the damage occurred in the heart muscles was considered permanent. Stress / physical exertion would affect the weak heart adversely. Luckily, I do not have any "lifestyle" issues thanks to my upbringing (mother had autoimmune conditions (potentially, V in hindsight) and a health nut herself). There are some of us who simply could not afford having a poor lifestyle choice due to underlying autoimmune condition. I knew there was something wrong well before things went out of hand a few years ago. Sorry, I went totally off tangent here x

[Rowmarsh in reply to Hidden]

Keyes

That is spot on advice. The strange thing with me is I'm normal weight, eat a healthy diet, never smoked and there is no genetic heart disease in our family. I was shocked when I was diagnosed with CSS cardiomyopathy having lived with straight CSS all that time and have only through hindsight and research discovered that ANCA negative should be a key marker to monitor CSS patients who I think are statistically prone to cardiac involvement; some 45-50%.

[Hidden in reply to Rowmarsh]

Excellent point. ANCA negative and cardiovascular diseases - I often get to read about the complexity of immune disorders..some inflammatory pathways do not make antibodies and are just as destructive and fatal if left untreated.

Rheumatology does have this antibody worship...Not that I am being disrespectful but patients can die due to this fixed belief even at the top level consultants (e.g. professors) in Rheumatology. There are excellent Rheumatologists who can think outside the box and they try to believe you but these are rare.

[Rowmarsh]

Thank you all for responding. I'm putting together plan at the moment on how to answer the question 'why do you think you can no longer carry out you present job or another similar one?' I was going to give the definition of Churg Strauss and all the symptom and how they have and do affect me then state my new diagnosis of CSS cardiomyopathy and the damage caused to the heart and how this is affecting me then tie the whole thing into how in the disease has affected my life at home and work. The fly in the ointment is I have had 8 years of the 10 with work adjustment working at home and flexibly and my sick record has not be classed as excessive but the hidden true is I have struggled daily to perform the role because I needed to do so to pay the bills. I think they will be hard pushed to refuse medical retirement because to do so would mean HR would need to terminate my employment on inefficiency but there are no grounds or I return to work but who will sign me back into work as bring fit with a severely damaged heart involving a stressful job? Interesting times ahead but thanks again and I agree that my report needs to state the worst case but how worse can it get! Lol keep smiling and stay positive that's my mantra from now on.

[Momo12]

Hello Rowmarsh , thank you for your good posts , my brother is diagnosed with CSS and he is seeing his rheumatologist Mile End hospital . He is receiving cyclo IV and preds treatment now . Do you think he still have to be monitored for his heart ? Or is he getting the ultimate treatment for now ? Thank you .

[PMRpro in reply to Momo12]

Just wanted to say that this is a VERY old thread and Rowmarsh hasn't posted on the forum for more than 2 years - so you may not get a response.