Asthma Peak Flows

Chest and lungs
1

Hi

I have had Asthma for about 8 years. I have an auto-immune disease that causes it.

My auto-immunie disease is not currable (Churg Struass Syndrome), I have tried all the medications, none work.  My gut does not digest steriods although I take them. Currently on 500ml Methyl Pred infusions every 6 weeks.  I also have Rituximab infusions every 6 months.  Nothing is really working for my disease. 

I do not have a respiratory consultant, I had one who was useless, totally useless. Long story.  I saw my Asthma Nurse at local surgery a couple of weeks ago, useless.  My peak flow was 270 which was good for me, although not taken it since last Asthma attack 18 months ago.  However, it was checked at my ENT hospital yesterday it was 110 at best lowest 90. 

I have no idea how bad my lungs are, what to do.  GP not interested either.  I hardly ever go outside because I am so ill with my CSS, my breathing is poor with exercise, just normal walking and every day tasks kill me.  Just getting so worried as went out yesterday to ENT by Ambulance as I am so ill, just walking a few yards to the ambulance had to take 10 puffers to breathe normally, scared the life out of the driver.

Its not on, should someone be looking after my Asthma?  Because I have a auto-immune problem GP says see consultant, consultant says see GP.  If I don't go out or move I am fine I suppose, just with exertion I am breathless, hubby getting scared now that I am left like this and my lungs are shot.

Sorry for asking the above, just getting worried need to know what all this is.  One good thing I never, ever get chest infections etc, never. But I am constantly ill with the Churg Strauss auto-immune illness. 

 

2

I am sorry to hear you feel so sick all the time.  You're symptoms sound a lot like mine!  I've never heard of Churg Struass Syndrome, but my asthma seems to be caused (for the most part) by something internal too.  I suspected my hormones are the cause, but I am not sure.  My doctor is useless too.   She wouldn't listen to me.  I told her that I felt my asthma was caused by something my body was doing - I have no idea how to explain it either!!!  so I'm sure my inability to articulate myself doesn't help... but she just kept pushing steroids.  I KNOW they won't help me!!  I wish doctors listened to their patients... we are not as stupid as they assume.  We really want to find a way to fix us, and sometimes our instincts are better than theirs.... because it's our bodies, and we don't have a bunch of other people to diagonse.. smile 

3

Hi Shareallicu

My Disease is rare, one of the rarest forms of "Vasculitis", so don't get scared.  I had hell trying to get a diagnosis just for the Asthma part so I understand.  As far as I know under the "Vasculitis" heading of my diesease there are two that the symptoms are Asthma.  Firstly, do you know what type of Asthma you have?  Churg Strauss Syndrome (EPGA) and another called Wegners have eosinophilic asthma.  You need a blood test for this.  You can have this type of asthma totally on its own without other diseases, perhaps you could have the blood test.  Both these deseases do not affect our hormes.  But if you are on steriods for your Asthma, perhaps the steriods may?  I don't know.  I suggest you go to your doctor and find this out first.  But beleive me I had hell too, still am with this disease.  My disease can attack any part of my body at any time and now I have bowel trouble, now try getting my GP to send to to a Gastro Consultant is almost impossible.  I am currently in a battle with him now.  There is no set test for CSS or Wegners, but to start with find out if you have a high eosinophilic count.  If you have there is a site called "Vasculitis UK" and I suggest you contact them for advice, they are fantastic and have a help-line too.  They helped me when I found out what I had.  I wish I had the answers to get over to the doctors how you feel, but I have the same.  If you have not got a good GP you can change.  I would but have hardly any where I live and the one I have is awful.  I have a life threatening disease and its ignored.  I am not medicallly able to advise, but if your Asthma is getting worse please don't hesitate to call the doctor or 999. Have you tried an allergist?  I never believed in all these allergy things, poo pooed it, but when I saw my allergist she was fantastic, it was her who eventually diagnosed my Churg Strauss, she saved my life.

4

Hi Quercy

Thank you for your reply, but unfortunately no diet would help my disease, before I got ill of was a vegetarian, very fit and very healthy, then this struck me down.  Its my auto-immune system that is attacking me, so I have chemo to try to kill it.  I eat lots of good food to counteract the loss of vitiams etc, but as I have Samter's Triad as well lots of food (mainly good food) makes my Asthma worse. 

So sorry about your Daughter thats awful with Asthma, poor thing.  I know Down Syndrome people can get of a lot of illnesses and can suffer so, but its good to know that a natural solution has worked on her Asthma.  Yes good nurtition is a must for her. No amount of helathy eating will help me I am affraid, oh it will help to put back the vitiamins I lose through chemo and the high dose of steriods. 

My sister lives in France for over 20 years, she is very ill too.  You have a wonderful health service, far better than the UK.  She has been treated wonderfully and I do not believe she would be alive if she lived in England.  I have Churg Struass Sydnrome/Samter's Triad and even my Consultant here in England is looking/treating us through France's Guidelines/Trials.  France seems to be doing great work on Auto-immune Diseases and other helath things too. 

I wish your Daughter better health, it must be so hard to have watched her suffer with her breathing. 

Oh and your English is very good, Oh how I wish they taught us French in my School when I was young.  Love your Country, it saved my sisters life and is so beautiful.  My sister loves her life in France and has many good French friends. 

Best Wishes and thank you.

xxxx

 

5

Oh I am not scared.  Death is just a part of existance... and I believe it's just another beginning.

But I am sorry you are going through hell.  I have been too!  I don't believe that doctors know anything, so when they prescribed steroids I refused them.   It makes no sense to take them for asthma.   Steroids will lower the bodies natural immunities and I would be more likely to get lung infections if i took them!  Contrary to popular belief, people with asthma should NOT use steroids.  I have had asthma since age 5 - have never used steroids, and have never had a serious lung infection;  people with asthma have weak lungs  already and need their immune system to be strong.  

I share some symptoms that you mentioned, so it made me interested in researching Churg Strauss Syndrome... I'm sure it's not what I have.  It would be so nice to have a name for the torture my body puts me through hehe! 

Doctors are only good at pushing drugs... not diagnosing.  I'm surprised you got a diagnosis at all, since CSS is so rare... That is one reason I believe my illness must be something rare... no doctor can give me a diagnosis, and they also ignore me when I try to describe my symptoms.  

I also have allergies so I know asthma can be triggered by allergies, but they have always been completely different for me!  It's like comparing apples and oranges.   My allergies have always been a nuisance, but nothing serious, while asthma has always been serious.

I'm done with doctors for now... they just push drugs, don't listen and don't seem to care.  I go to the best "doctor" ever now!  the doctor of doctors... although he is free, he takes a long time to diagnose and he will never give me a name to call it, but he can also cure me if he wanted to.... Prayer is the medication he prescribes... I have no fear of death. 

My life is in His hands, and if he wants me to remain here to suffer, I will;  but if he wants me to come home, I will.  I would prefer going to heaven, but I have a feeling He wants me to stay and suffer.   And I am sure there is a reason to all suffering!

Regardless, I do hope and pray that you start to feel better Michelle and that your doctors listen to you and do the best they can to help you improve your health smile

6

Better nutrition and a lot of water has also improved my asthma... but my mom smokes in our house, so It always makes me get asthma... I wish I could live somewhere without the smoke... I would probably never have asthma.  But in America you need your health, to get a job, to buy a house.   I need to find a place to live that will let me have a home first... so I could get healthy, to enable me to work.  I don't think any country does that though... so i have no choices... for now except to pray.  If anyone prays, and wouldn't mind praying for me, I would be very grateful!!  Thanks, and God Bless! smile