Churg Strauss Syndrome in Remission?

[Rowmarsh]

I keep being told by my consultants that my Churg Strauss has been in remission for a while now yet every time I mention that I am lethargic, tired, lack concentration, flu-like symptoms and no strength I am looked at with sympathy and what looks like a blank wall? Am I mad or are the doctors just unable to explain why? It really is getting on my .......... now! After 10 years of this response I should be able to manage their responses but having newly been diagnosed with CSS Cardiomyopathy and feel the doctors missed the risks of cardiac issues, I could blow my top!

[Hidden]

I'm afraid I don't yet know much about the various types of vasculitis because I have RA and am still waiting to see whether I also have some type of vasculitis as well now. But I do know the feeling of being met with a wall of polite resistance. My GPs shrug and say it's up to my consultants. The rheumatologist just talks in riddles and passes the buck to some other specialist who I have so far had to organise myself. No one will take my symptoms on board as their responsibility.

I think it's lousy that they did nothing when you kept asking and you have consequently developed cardiomyopathy. This is what I dread, having just had two separate week-long hospital admissions. And despite one of these nice hospital consultants actually phoning him from the hospital to say all my problems and soaring inflammation levels are rheumatic, my rheumatologist still twiddled his fingers and told her that we "should let the dust settle" - oh yeah so is that dust to settle on my grave I'm wondering? Both my parents died prematurely from undiagnosed vascular dementia and heart failure leaving doctors shrugging in their wake.

So I would tell your doctors how you are feeling if only to let off some steam and so they hopefully learn their lesson.

[Cloe]

Based on what my sisters consultants say and my research unfortunately it is part of CSS and also a side effect to some of the medication. Maybe you could ask your consultants, if how you feel now is as good as it gets. My sister needed this confirmation.

Now everything she does takes forward planning, if she knows something will take it out of her she'll make sure she gets to rest well and will way up how much she wants to do something and if it's worth it. Learning her limitations with this disease resting well and managing best she can.

It's not ideal and it's horrible but crucial you look after yourself.

I don't think there are always the answers to make it all better!

Good luck! X

[Hidden]

Hi Rowmarsh,

It's infuriating isn't it! Unfortunately Dr's aren't great at treating or understanding symptoms like fatigue etc as there is no magic cure, it's not something they can medicate.

It's difficult when you have had a condition for such a long time to work out what is active disease and what is damage done by the disease. With your recent diagnosis of Cardiomyopathy I would question whether your CSS is in remission. Do you have faith in your Consultant and feel they understand CSS? Do they have experience of treating other patients with CSS? If the answer to either of these is no then you may think about seeking a second opinion from a more experienced Dr. ( there are a number of multi disciplinary Vasculitis Clinics dotted up and down the country ).

Certainly cardiomyopathy won't help your symptoms. I was at the Vasculitis Patient Symposium recently and one of the most popular presentations was from a Dr Neil Basu who has done a recent study looking specifically into ANCA associated Vasculitis and fatigue. He used advanced brain imaging and found that there was subtle changes in the brain of people with Vasculitis related fatigue. Interestingly a group of patients were then helped by a graded exercise programme, dietary advice and psychological support. This points to fatigue etc being a multi factorial problem requiring what Dr a Basu calls " novel " solutions, ie not more medications!

If you think you need a second opinion regarding your CSS then you can always e mail VUK for advice or phone the helpline.

Regards

Keyes

[Rowmarsh in reply to Hidden]

Keyes

Thank you for your detailed reply.

I am now under the Royal Brompton in London. If it weren't for them I would be on my way to cardiac arrest. My previous hospital of 10 years has a lot to answer for in missing the cardiomyopathy knowing I am consistently ANCA negative and had a known irregular heartbeat. I am due to see my consultants as an outpatient and will test them on the list of non-clinical symptoms I have. Hopefully the response will be positive.

Yes you are right, I am not convinced I am in remission.

That is really interesting regarding the dietary and exercise research. I notice a difference if I eat really healthy and then have days of not.

I have realised that there is a long road of discovery for most doctors when faced with patients with vasculitis or even diagnosing it quickly. At least for now I have more faith in the Royal Brompton as they seem to have the specialists.

[Hidden in reply to Rowmarsh]

Rowmarsh, I am glad to hear you have faith in your Consultants now.

I have possible Behcets and find that my fatigue and joint pain are helped by a daily walk ( easier some days than others! ) and I truly believe that if you give your body healthy fuel then it helps, especially when you have a heart complaint as well.

I hope your next appt brings some answers.

[Hidden]

Hey Rowmarsh, I hope you're feeling a little less fed up today. I totally understand your frustrations, I really do. When I was first diagnosed, only 18 months ago, (nowhere near the long haul you've already endured) and I felt like I'd never be able to recover from the state I was in. I was barely able to eat, walk or function for more than a couple of hours due to the most horrendous headaches/jaw pain/sinusitis. I drove myself to my first consultation (to see if I had vasculitis) unable to hear my car's engine and hoping I made the 10 mile trip without incident (my 8 month old baby was strapped in the car seat in the back). That afternoon I was hooked up to i/v steroids and I was booked in for a cyclo infusion the next day. And so my journey began...The memories of those early days are still very vivid and sore especially as I ballooned in weight and had more downs than ups. I asked my consultants (6 months ago) if this was 'as good as it gets' and they suggested a healthier diet and exercise would probably improve my symptoms of fatigue, tiredness and more tiredness. They also mentioned that in general it takes 18 months to adjust to the drug/cytotoxic/biological treatments I'd received. I went home feeling really let down and frustrated and began a diet that day to prove a point that it wouldn't improve things. I started off by weighing my self daily (I still do actually) and keeping a daily food diary as I went along so I could track my progress or triggers for felling unwell. I have cut out quite a lot from my diet now (including gluten 3 wks ago) and I have lost over 2 ½ st in weight. I take vitamins and other supplements too. I can actually see my eyes now the cheeks have gone!! But the main benefit (apart from being able to reduce my pred down and having glowing skin) is I don't feel tired. I can exercise and I feel normal-ish (still have off days and weekends away can do me in for the week). I do better than some of the younger mums at the toddler groups I go to and I can feel a bit smug because I know what I'm hiding from them all, (I refuse to let this illness define me) but I know I'm not anywhere near where I used to be pre WG/GPA.

Please don't think I'm preaching at you or suggesting that 'you' and your diet/lifestyle is the only thing which is wrong, because I'm not. I just wanted to share what I've done (initially reluctantly and pushed by my doctor's flippant remarks) to combat the undesirable side effects of the toxic drugs and this stoopid illness (for which there is, as we all know, no cure )

I'm still hoping for more benefits and I'm not going to stop...

I hope you feel better soon and I think you should talk to your doctors to make sure everything is as good as they can get it for you (and then see what you can do too).

[Hidden in reply to Hidden]

Fab post raspberry tea. I also think of diet and exercise as one of the few things I can control in this illness. I am lucky ( ? ) as I never put on weight with high dose pred ( due to jaw and abdominal pain ) and am still 2 stones lighter than normal but I believe this has helped me stay very mobile comparatively.

[Hidden in reply to Hidden]

Hi Keyes, I live in hope for us all that there is a simple fix, like just changing your diet and being positive about the outcome. I know I'm probably delusional but I have to have hope, it keeps me going. (Plus, you're right, it's something only I can control).

[Rowmarsh in reply to Hidden]

Morning Raspberry Tea

You are right about the exercise. Before I was diagnosed with CSS cardiomyopathy two months ago I could just about manage to keep active especially in the garden which is a passion of mine and holiday city breaks. But for now I struggle to do even minor tasks without getting exhausted but I will not give up. My next life changing event is to try and get medical retirement from work. This will be the key to me relaxing and eventually regaining strength and balance in my life. You are right, we all need hope that vasculitis will be curable but as individuals we need to understand the disease and non-clinical symptoms that floor us on a daily basis and persuade the medical profession that these legacy symptoms are real and debilitating and must be taken seriously.

[Hidden in reply to Rowmarsh]

I totally agree with you Rowmarsh. And gardening is one of my passions too (albeit maverick style). Hang in there and hopefully you'll get everything you need to help you strike the right balance.

[Rowmarsh in reply to Hidden]

Raspberry Tea

Thank you for your great words and support. I have just returned from the Royal Brompton in London and had a really positive response to all the non-clinical symptoms that have started again. My consultant said that they are all recognised as part of Churg Strauss Syndrome and should be recognised as they are debilitating for the patient. What a breath of fresh air! I mentioned the possibility of leaving work early and was met with 'why not, if that will help you then we can support your case'. I need to have more respiratory investigations but I feel as though I have regained the faith in doctors. My consultant did say that Churg Strauss Syndrome is one of the hardest to diagnose and treat and doctors in the general field are only now gaining an understanding. I just hope they are all quick learners and can identify and diagnose must quicker than present.

[Hidden in reply to Rowmarsh]

Good news. I'm so pleased to read you have been see with some compassion and understanding of your position. Sounds like you're likely to to get what you were hoping for.

[Susie_b in reply to Rowmarsh]

Hello do you mind if I ask how you got on with exploring medical retirement ? Thank you

[seejayd]

I want to thank everyone that has taken the time to write about their experiences. I too just had a bout of fear along with debilitating symptoms after taking an antibiotic that seems to trigger a lot of adverse affects. Of course I jumped in fear, and when I saw the doctor, I felt a bit of foolishness, as I got a look of impatience from doctors, saying that I looked healthy, and blood test came back within the normal range. Raspberry, your explanation is as good as it gets! Perhaps the best words yet! We..or rather..I need to adapt and be a better parent to ourselves.

[Hidden in reply to seejayd]

Hi seejayd, it's a funny life isn't it. When I found out I had vasculitis and realised the implications and the compromise on my life I felt as if everything had ended for me. However, I soon discovered that there are many of us walking around with a burden. As I opened up to people about what I was going through (seeking sympathy) others would tell me about their own personal fights with bad health, bereavement or something equally sad. I've come to realise that my position isn't unique or as bleak as I'd previously convinced myself, I am just experiencing one of life's troughs and I'm trying to improve my mind set as well as my health...I've got some work to do. Dealing with a doctor's indifference to my cause is something I definitely struggle with too. I hope are recovering after your recent scare.

[Suzym2u Moderator Vasculitis UK]

Cardiac myopathy is a very well documented risk with CSS (EGPA) so there really is no excuse for ignorance among those who profess to be able to treat it. Unfortunately, CSS is more difficult to treat than other types of ANCA vasculitis, and preventing the cardiac myopathy is not easy, but controlling disease activity is of paramount importance.

Fatigue is another matter. It is certainly not exclusive to vasculitis. Many people with other auto-immune diseases suffer from it, as do those with cancer, chronic kidney disease and M.E. Doctors have been slow to recognise it as a real problem until very recently. You cannot see it, touch it, do a blood test for it and it does not show up on a scan - other than those mentioned by Keyes in Neil Basu's investigations! So it gets dismissed as just being tired, or "all in the mind". Dr Andrew McClean working with Prof Lorraine Harper and Dr Neil Basu in Aberdeen have made serious studies of it, but there is much more to learn yet.

The hormone serotonin plays a big part in fatigue and depression or low mood. It is produced mainly in the gut, where its production is influenced by the bacteria which are the normal inhabitants of the gut. Serotonin is responsible for controlling learning, mood and sleep. The vagus nerve links the brain and the gut and there are suggestions that artificial stimulation of the vagus nerve might have an influence on fatigue. This is an area that might soon be a subject for a research project.

So this is a very complex picture based around the interaction between the brain, the autonomic nervous system and the bacteria in the intestines. The good news is that a good balanced healthy diet and moderate exercise will almost certainly be beneficial.

The less good news is that it is unlikely that there will be a quick-fix pill or that there is any particular magic food or supplement that will throw the switch that turns off the fatigue & restores the energy.

As a final thought, if this complex interaction between brain/autonomic nervous system, gut and gut bacteria really is what controls fatigue, then as each of us has a different population of gut microbes, one might expect different people to have widely varying experiences of fatigue.

John ( Mills )

[Skipper55]

I am in the same situation and if this as good as it gets , i am seriously considering pulling the plug on living , There is rarely a day that is worth living

[orsen-trapp in reply to Skipper55]

Skipper, there's always that option but talk to a Dr to check it's not just the chemicals talking. Meds can play havoc with the mind. The consultant who looks after the crohn's bit of me, when asked if I would ever be free of the fatigue, said I'd probably never be 100%. However, three weeks ago I had some unexpected days when I was the old me, full of energy and near normal strength. Then I relapsed, but I had those days and I'm working towards getting back there again. If getting out of bed is the day's achievement I celebrate that. Today I managed some gardening in the sunshine which I couldn't have done three days ago. There's something good in every day, even when I'm in hospital - a kind word, home baking on the tea trolley, getting rid of a cannula!! Sometimes you just need to look for it.