Churg Strauss

[wiserlady]

For a few months I've been getting upper tract infections nose and mild sinus problems, these clear up when I take antibiotics and steroids and then a few weeks later come back. I thought it had passed and then took montekulast, which in some people can cause Churg Strauss, and a few days after starting to take it got a pain in ear, the same sinus problems, breathless, feeling very cold. Have stopped taking montekulast in the hope it clears but would appreciate any thoughts on if I might have churg strauss. Please don't advise me to talk to a doctor, that is all in hand, just not possible right now, needed something in the meantime. Knowledge is power.

[Mooka]

Have you visited the vasculitis U.K. website to see if you have other symptoms? Vasculitis is incredibly difficult to diagnose even for doctors with test results in front of them so it is very difficult to give you answers. I hope if you are going to see a doctor in the near future it is one that specialises in your symptoms. Good luck.

[wiserlady in reply to Mooka]

Thanks for reply. I live in England, you have to speak to a nurse not a doctor, and there are no specialists in the subject at that stage. They might eventually refer you to a doctor who specialises. I did put a post there. Hope you are doing well and having a good day.

[Mooka in reply to wiserlady]

You would be lucky to be diagnosed by a GP let alone a nurse if you have vasculitis symptoms. If vasculitis is suspected you need a referral to a vasculitis specialist. The helpline should be able to help you find one to advise your GP.

[wiserlady in reply to Mooka]

Hi again, I have spoken to my nurse at the doctors -thats how it works here - and he is arranging for me to have blood tests, then if needed refer me to an immunologist. He first said he would refer me to a respitory consultant, but everything Ive read said it must be an immunologist as it is an auto immune disease. Of course he tried to fob me off with how it cant be churg strauss as it is very rare, but that doesnt mean it cant be that. I actually came here hoping to speak to someone about the symptoms and illness, I am fine at sorting out who to contact and what to do with the doctors thanks. Like I said in my original post, I don't need advice on how to deal with the medical profession.

[Mooka in reply to wiserlady]

Perhaps it may help to ask your question again but be more specific about your symptoms. I have had sinus, nasal and respiratory problems and I have MPA. Sinus symptoms are also linked with GPA. Most of us are treated by rheumatologists or nephrologists. I only see an immunologist as my treated had left me immune compromised. Good luck.

[wiserlady in reply to Mooka]

Thanks for the helpful answer. Hope you are coping well with your own illness. From experience on forums I've learnt that many reply but ignore what you actually asked of them, so it's always best to start off with a short precise post and only give more info if the person who replies is on the same wavelength. Googling nephrologist I see it's a specialist of kidneys and all to do with kidneys, mine are in tip top order, but it helps a lot to know about it being a rhumatologist but scary when the nurse at the doctors doesnt realise that.

[EGPAGuy]

Hi. I have Churg Strauss..diagnosis is a tricky thing but nearly all of us have Asthma. If you feel weak breathless etc that's a possible indicator of some sort of eosinophilic disorder which can albeit rarely lead to churg strauss/egpa. No one knows how it is caused. Certainly sinus issues are typical...if it helps I have never had any sinus issues or have ever tested ANCA positive. I am no doctor but if you haven't been diagnosed with asthma I would say its unlikely you have churg strauss. Its pretty much the first box any specialist will tick towards diagnosis but doesn't discount other forms of vasculitis and you could be the exception to the rule.

[wiserlady in reply to EGPAGuy]

hi and many thanks for your reply, its helpful. I have been told I have asthma due to raspish throat sometimes, breathlessness, lack of energy, but its not that simple... I am 64 and only got this way a few years ago, been put on asthma inhalers which often dont help, and think it could really be because of my scoliosis and how I am unable to breath in much air due to my back and small lungs, a lung obstruction, rather than asthma, ive seen lots of consultants and most of them just make wild guesses, ive given up bothering, it was taking up lots of time and not helping one bit. the symptom that made me concerned it might be churg strauss was when i get the lower legs burning and tingling a lot, pointing to nerves, and no it cant be diabetes etc. have done a lot of research and eat a very healthy diet and am not overweight. hope you are doing well. My research told me that 90% had asthma, and anyway many who were diagnosed with asthma really had a high white blood cell count and had been misdiagnosed with asthma as it seems the same.

[ElaineRH in reply to wiserlady]

Hi, just to add to my earlier comment, my respiratory consultant was sure that I had just eosinophilic asthma which was what confused them. There were never enough questions asked about my medical history at the times as I was sent there to look at my asthma alone. I too was of the impression that virtually all patients with EGPA have late onset asthma or existing asthma that suddenly get worse. One good piece of advice I was given by the Brompton was to worry less about the label and concentrate on the treatment, which is largely steroid based, along with steroid sparing treatment such as azathioprine, or biological medication such as Benralizumab or mepolozumab. I felt that approach helped with the frustration caused by the medical teams disagreeing…. Good luck

[wiserlady in reply to ElaineRH]

Thank you. Hope you get on well yourself. I agree with the advice the hospital gave. You could drive yourself crazy trying to work out all those other bits, and could get it all wrong, often guessing, but if the treatment is usually steroids in a way it does not matter, the treatment is the same.

[EGPAGuy]

I do have those symptons..lower legs tingling, numbness in feet/ especially my hands, but my main involvement is in my lungs and radiology in my case led to the diagnosis together with symptoms/history review with a specialist. At your next full blood count look at the Eosinophil count..Eosinophilic Pneumonia has similar symptons or other forms of eosinophilia. These little protectors are typically triggered by allergies, mould, bug bites and parasites and so the connection with Asthma I guess. I also live in England and sad to report was misdiagnosed initially at local hospital although in my case my GP has been excellent in all aspects.

[wiserlady]

Hi and thanks for reply. Mine was triggered off by taking the tablet montekulast, I dont have allergies, parasites etc. The doctor is arranging the blood tests. My lungs are no worse than before. My feet and hands are fine, ive read that you can lower your eosinophilic levels by eating tumeric, ginger etc. my asthma is non allergic.

[ElaineRH]

Hi, I have EGPA- but like all very rare conditions took a while to get a proper diagnosis, as most of the consultants and doctors consider it’s so rare that it’s unlikely to be that, and often don’t ask the right questions. I have had severe, uncontrolled Asthma for 25 years, with sinus issues, rashes , lower limb nerve pain etc and now know I was in the prodormal phase for several years. In 2012 I have was was my first “flare” but still not picked up. This was possibly because I was on and off steroids for years. Things worsened massively for the next few years until some poor emergency treatment at my local hospital left me with a pneumothorax. This I think was the trigger for the next eosinophilic phase, but I still couldn’t persuade the doctors that it was anything other than severe asthma. I had been having cardiac symptoms for some years by now and a cardiologist that my GP sent me to advised me to go to the Royal Brompton for an holistic view on the situation. Within 3 weeks I had the diagnosis ( this followed a week long admission as lung function down to 22% plus all the other symptoms). The team at the Brompton liaised with my consultant in my treating hospital , but It look another 18 months and high dose steroids for my consultant to agree that the diagnosis was correct, although I was given the correct treatment for EGPA.All of these delays has caused irreversible damage to lungs, brain, nerves etc but I have always tried to keep fit and eat well.

I am ANCA negative… which seems to flummox the doctors. I was then treated with Benralizumab to control the Eosinophils but things were still not good. I am in the final vascular phase. Another admission earlier this year has finally given a full team in the same hospital trust and on mycophenolate which has made a big difference.

My Story is to demonstrate that with some things you needs to be persistent. I have a GP who believes in the expert patient which helped with all the referrals.

It might be a good idea to keep a diary of all the symptoms that you experience and perhaps see if your GP will refer you to a specialist hospital …also perhaps call the Vasculitis helpline- they were very helpful and supportive.

Good Luck with it all and hope you get some answers soon

😊🤞

[wiserlady in reply to ElaineRH]

Hi Elaine, you have been so brave and persistent and resourceful, I hope you feel better and more optimistic now. Thank you for sharing this with me. I had some tingling and burning of my lower legs about three years ago when I had an "asthma" episode, I pointed out about the legs and they werent interested. By the way am in UK and this is NHS. Not had the burning legs at all until very recently after taking montekulast for a few days, immediately stopped taking it. They seem to have this idea that if it is rare then it cant be that, which makes no sense, it cant be that only makes sense if it does not exist. The nurse I spoke to at my doctors surgery - on phone -about this recently said well if the blood tests etc come back iffy we send you to a respitory expert, I said no, its an immunologist if its about the immune system - it worried me he kept thinking of it as a lung problem instead of something that can affect the whole body. Ive been to a respitory guy many times and refuse to go now, all they do is spiro tests - which I can do at home - and write down notes about this and that, none of it changes a thing, if you say your asthma inhalers are giving you bad side effects or dont work they insist on switching you to another and ignore what you say about how youve tried the otehrs and they are the same. I can phone my doctors surgery to change from one inhaler to another, I dont need to wait months, take a day off of work and travel twenty minutes to achieve the same thing. Like you I try to eat well, well better than many, and I have kept a journal of symptoms for years.

[Katie18]

Hi I have churg Strauss and my first really obvious symptoms were bad allergies - sneezing and sinus problems which I was referred eventually to hospital for - and then i suddenly developed bad asthma. A few months later I had a virus that wouldn’t clear up - similar to flu. I was tired and feeling generally unwell for months after but kept being told by my GP it was a post viral syndrome. I did take montekulast. Then I started having lots of back pain problems. When I was referred to have a scan I collapsed. I could hardly walk into my GP and then I ended up at A&E with awful pain in my back and legs. The hospital diagnosed me as my blood readings had gone through the roof. For me the vasculitis had caused my blood vessels to swell and stopped the blood getting to my feet and lower legs. I suffered foot drop and couldn’t walk for over a year . It also affected my lungs. If I had been diagnosed sooner I wouldn’t have suffered the nerve damage in my legs which I now have been left with. I’d urge you to be referred to rheumatologist quickly if you do think you have churg Strauss to limit the damage it does to your organs. It is difficult to diagnose as everyone’s symptoms are a bit different. I hope you get the answers that you need. Best wishes

[wiserlady in reply to Katie18]

Thank you, hope you are feeling better today. I am pushing to have blood tests etc asap, I cannot do more than that, they insist that is done before they think about any next step.

[Katie18 in reply to wiserlady]

Hopefully that will give you a good indication of what is going on - they can tell so much from blood tests.