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Re: Prognosis of Samters

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This was my initial issue as well.

 

I have very good response from nasal corticosteroids that reduce my polyps. With my polyps reduced I do not suffer from the asthma like symptoms unless I exercise (in these cases I have a short-term rescue inhaler handy).

 

I have an Alvesco inhaler I use twice a day, and Xopanex as my rescue inhaler. For nasal corticosteroids I've used Veramyst with great success and I'm now using its generic equivalent due to financial reasons but it also works (it just smells/tastes worse... yes I know that sounds insensitive but I couldnt taste either until I was on the nasal spray).

On Tue, Jun 28, 2011 at 12:13 PM, Helen <hpcharles63@...> wrote:

 

I was diagnosised a year ago and am currently suffering with severe asthma with peak flows of about 220. It is worse at night and I feel as if my lungs are full of fluid which I cough up and then have a prolonged asthma attack.

I am on a very restricted diet as am very affected by what I eat. Tried singulair which I was allergic too. I cannot even tolerate paracetomol and am now back on steriods again.Have masses of popyps but can live with that and the lack of SOS.

It is affecting my life now as I am keeping my partner awake with coughing and breathing problems and i am permentantly exhausted.Spoke to GP with regards to aspririn desense but seems impossible in the UK apart for Cambridge.

Could it all go away on its own? Grateful to hear from anyone who has had samters for a while.Feel better for the moan. Thanks for your time !!Helen

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Helen,I am in the US and have had Samters now for 24 years (diagnosed). I agree with others that when polyps are brought under control the Asthma sometimes also improves. Although, you would want to get this from others as I have not suffered from the Asthma portion of Samters symptoms since I was 14, except when I excercise. I am now 52 and am about to undergo my 9th polyp surgery. I am afraid it is a life-long battle, however, for each one of us, what makes a difference is finding what works for you, whether that be desensitization to aspirin, diet, medications, and usually a combination of many things. This group has been a wealth of information for me over the years and I encourage to go through the archives and review those topics that pertain to your symptoms.JaneFrom: Helen <hpcharles63@...>Subject: Prognosis of Samterssamters Date: Tuesday, June 28, 2011, 11:13 AM

I was diagnosised a year ago and am currently suffering with severe asthma with peak flows of about 220. It is worse at night and I feel as if my lungs are full of fluid which I cough up and then have a prolonged asthma attack.

I am on a very restricted diet as am very affected by what I eat. Tried singulair which I was allergic too. I cannot even tolerate paracetomol and am now back on steriods again.

Have masses of popyps but can live with that and the lack of SOS.

It is affecting my life now as I am keeping my partner awake with coughing and breathing problems and i am permentantly exhausted.

Spoke to GP with regards to aspririn desense but seems impossible in the UK apart for Cambridge.

Could it all go away on its own? Grateful to hear from anyone who has had samters for a while.

Feel better for the moan. Thanks for your time !!

Helen

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Helen,

I know there are some on this group who have been desensitized in the UK, so

maybe they'll pipe in. Like you, when I have asthma it is very 'wet'. I've

known people with dry asthma coughs, but mine has always left me feeling like

I'm drowning. I think that is a bit of a Samter's hallmark since we

over-produce mucus as part of our inflammatory response to all triggers. I say

all triggers, because for many of us, aspirin and related salycilates is only

one of the things we are allergic to. If you have other allergies, they can

also be contributing to your symptoms. I would suggest getting any other

allergies identified so that you can treat (immunotherapy)or avoid them as well

as the salycilates. For me immunotherapy for my environmental allergies as well

as aspirin desense has been a great help.

Singulair is a luekotriene inhibitor, and would probably help a lot with

reducing the mucus and inflammation in conjunction with steroids to get out of

the acute state. There are other medications you can try that do the same thing

in a little different way - Accolate and Zyflo. I don't know if an allergy to

one precludes the others, you might want to ask your doctor about them.

I don't think this all can go away on its own. Samter's is caused by " an

anomaly in the arachidonic acid cascade, which causes undue production of

leukotrienes, a series of chemicals involved in the body's inflammatory

response " (Wikipedia!). When you lungs have had a chance to heal from your

current asthma (this can take a while, I'm sure I'm not the only one whose lungs

seem 'twitchy' after a bad episode, it seems like when you've had a bad spell

you can really easily have more) and you are on a good maintenance regime you

may not experience the asthma as much. But I think your best bet is to find a

way to treat your triggers. If you can find a place to desense in the UK, do!!!

It is great to be able to take something for pain when you have a headache.

Good luck.

Jennie

>

> I was diagnosised a year ago and am currently suffering with severe asthma

with peak flows of about 220. It is worse at night and I feel as if my lungs are

full of fluid which I cough up and then have a prolonged asthma attack.

> I am on a very restricted diet as am very affected by what I eat. Tried

singulair which I was allergic too. I cannot even tolerate paracetomol and am

now back on steriods again.

> Have masses of popyps but can live with that and the lack of SOS.

> It is affecting my life now as I am keeping my partner awake with coughing and

breathing problems and i am permentantly exhausted.

> Spoke to GP with regards to aspririn desense but seems impossible in the UK

apart for Cambridge.

>

> Could it all go away on its own? Grateful to hear from anyone who has had

samters for a while.

>

> Feel better for the moan. Thanks for your time !!

>

> Helen

>

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Firstly get your self on Sungulair, that will help your asthma and nasal situation. Then ask your Doc to refer you to the Royal Ear Nose and Throat hospital at Grays Inn road Near Kings Cross London. They will be able to desensitise you if they feel it will work.From: Nick Creekmur <ncreekmur@...>samters Sent: Tuesday, 28 June 2011, 18:25Subject: Re: Prognosis of Samters

This was my initial issue as well.

I have very good response from nasal corticosteroids that reduce my polyps. With my polyps reduced I do not suffer from the asthma like symptoms unless I exercise (in these cases I have a short-term rescue inhaler handy).

I have an Alvesco inhaler I use twice a day, and Xopanex as my rescue inhaler. For nasal corticosteroids I've used Veramyst with great success and I'm now using its generic equivalent due to financial reasons but it also works (it just smells/tastes worse... yes I know that sounds insensitive but I couldnt taste either until I was on the nasal spray).

On Tue, Jun 28, 2011 at 12:13 PM, Helen <hpcharles63@...> wrote:

I was diagnosised a year ago and am currently suffering with severe asthma with peak flows of about 220. It is worse at night and I feel as if my lungs are full of fluid which I cough up and then have a prolonged asthma attack.

I am on a very restricted diet as am very affected by what I eat. Tried singulair which I was allergic too. I cannot even tolerate paracetomol and am now back on steriods again.Have masses of popyps but can live with that and the lack of SOS.

It is affecting my life now as I am keeping my partner awake with coughing and breathing problems and i am permentantly exhausted.Spoke to GP with regards to aspririn desense but seems impossible in the UK apart for Cambridge.

Could it all go away on its own? Grateful to hear from anyone who has had samters for a while.Feel better for the moan. Thanks for your time !!Helen

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sadly allergic to singulair too so not having much luck there.

Seeing GP next week for review after steriods and talk about desense in

Cambridge but funding an issue it seems.

>

>

> > 

> >I was diagnosised a year ago and am currently suffering with severe asthma

with peak flows of about 220. It is worse at night and I feel as if my lungs are

full of fluid which I cough up and then have a prolonged asthma attack.

> >I am on a very restricted diet as am very affected by what I eat. Tried

singulair which I was allergic too. I cannot even tolerate paracetomol and am

now back on steriods again.

> >Have masses of popyps but can live with that and the lack of SOS.

> >It is affecting my life now as I am keeping my partner awake with coughing

and breathing problems and i am permentantly exhausted.

> >Spoke to GP with regards to aspririn desense but seems impossible in the UK

apart for Cambridge.

> >

> >Could it all go away on its own? Grateful to hear from anyone who has had

samters for a while.

> >

> >Feel better for the moan. Thanks for your time !!

> >

> >Helen

> >

> >

>

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sadly allergic to singulair too so not having much luck there.

Seeing GP next week for review after steriods and talk about desense in

Cambridge but funding an issue it seems.

>

>

> > 

> >I was diagnosised a year ago and am currently suffering with severe asthma

with peak flows of about 220. It is worse at night and I feel as if my lungs are

full of fluid which I cough up and then have a prolonged asthma attack.

> >I am on a very restricted diet as am very affected by what I eat. Tried

singulair which I was allergic too. I cannot even tolerate paracetomol and am

now back on steriods again.

> >Have masses of popyps but can live with that and the lack of SOS.

> >It is affecting my life now as I am keeping my partner awake with coughing

and breathing problems and i am permentantly exhausted.

> >Spoke to GP with regards to aspririn desense but seems impossible in the UK

apart for Cambridge.

> >

> >Could it all go away on its own? Grateful to hear from anyone who has had

samters for a while.

> >

> >Feel better for the moan. Thanks for your time !!

> >

> >Helen

> >

> >

>

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