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Drug that can make damaged lungs regrow !
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Rossoe Reply with quote
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PostPosted: Tue Apr 25, 2006 7:57 pm    Post subject: Drug that can make damaged lungs regrow !
 
I was very interested in the following article from the Daily Mail in the UK, The main area of research appears to be for COPD and Emphysema sufferers (more significantly those that suffer alpha-1 antitrypsin deficiency), but considering how similar these diseases/conditions are to some of the connective dissorders associated with SP's I think its very likley that this research could very well lead to a line of drugs that may target those with recurrent pneumothoraces -

Quote:
Scientists have discovered a drug that makes damaged lungs regrow - raising hopes of a cure for the crippling disease emphysema.
It opens up a new field of biology which could potentially be applied to other organs that do not repair themselves naturally. Trails of the lung drug start this week. If they are sucessful, it could be available for patients in two to three years.

In Emphysema the lungs alveoli - tiny air sacs where oxygen and carbon dioxide are exchanged become damaged, making it harder for air to get in and out. This leaves sufferers struggling for breath. The new drug targets the receptors that make the alveoli grow, prompting them to regenerate.

'We're in completely new territory with this drug it's the first that actually reverses damage to lungs and is the closest anyone has been to a cure,' says Professor Robert Stockley, who is leading the research at University Hospital Birmingham.

'If trials are sucessful, we hope to test the drug on other chronic lung conditions. There is a possibility the technique could be also applied to other organs such as the brain.'

Emphysema is one of a group of lung conditions known as chronic obstruction pulmonary disease (COPD) which affect 600,000 people in the UK.

Until now, treatment has been very limited. 'We haven't been able to repair the lungs before, other organs, such as the liver, can regenerate naturally, but the lungs cannot,' says Prof. Stockley.

'The best we have been able to do is stop the disease progressing if it is caused by smoking, we advise sufferers to give up immediately, and control it with asthma inhalers or steroids. The only other option is lung transplants, but lack of donar organs means this can rarely be offered.' As emphysema progresses and lung function deteriorates, sufferers can become bed-bound and might eventually die of a respiratory infection.

The disease is caused mainly by smoking and pollution, which damage the elastic supporting structure within the lungs. But around 25,000 people in the UK suffer a genetic condition, called alpha-1 antitrypsin deficiency, that predisposes them to emphysema.

The new drug started life in the late 1990s when scientists in America discovered that vitamin A stopped the development of emphysema in animals.

Pharmaceutical companies then began to trace the specific molecule within vitamin A that interacted with the lungs, in order to develop it as a drug that would work on humans. During further tests on animals given the new drug, scientists found that the animals' alveoli regrew until their lungs were almost back to normal after a month.

Initial tests on humans to check the drug's safety were successful. In a second study. beginning next week. half the 260 alpha-1 antitrypsin deficiency patients, recruited in England and Holland will be given 5mg of the drug; the other half will get a placebo. They will take the drug every day for a year and be monitored.

Scientists at university Hospital Birmingham have also been developing an innovative CT scanning system to check the progress of the disease, which will be used in the trial.

In the past, the progression of emphysema has been measured with lung function tests, which involve patients blowing into a tube that measures how far and fast air an be exhaled from the lungs. But this is only a crude measurement.

The results of the trial will be known in 18 months time. If it is successful more studies of people with other COPD's may be carried out.


To contact Professor Robert Stockley email : Rob.Stockley@uhb.nhs.uk

A link to this story on BBC : http://news.bbc.co.uk/1/hi/england/west_midlands/4944122.stm





Last edited by Rossoe on Sun Jan 22, 2012 12:33 am; edited 13 times in total
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Gambit Reply with quote
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PostPosted: Tue Apr 25, 2006 10:02 pm    Post subject:
 
That's pretty interesting. The toxicity profile must be very good if patients are going to be taking this for 12 months straight. The other issue is that whole Vitamin A is a fat soluble compound and can be toxic if it builds up in the body or to developing fetuses in high doses. We still don't know if this drug will have the same effects. 5mg of vitamin A is about 10,000 IU, which is on the high end, but not toxic. Since this drug is smaller than vitamin A itself, 5mg of the drug might be equivalent to much more than 10,000 IU of vitamin A. I'll look forward to reviewing the published clinical studies in the future.

If you're a female, I'm gonna guess that you'll need to be put on birth control or agree to have an abortion if you become pregnant while taking the drug.

I wonder if SP patients also have this alpha 1 anti-trypsin deficiency. Trypsin is an enzyme that cuts proteins at certain amino acids, I think arginine and lysine IIRC.
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Rossoe Reply with quote
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PostPosted: Sat May 20, 2006 8:17 pm    Post subject:
 
I'm trying to research some of the connections between SP patients and alpha-1 antitrypsin deficiency at the moment.

I know that in the UK the tests are not favoured by NHS because of the high costs and the limited number of positive findings.

Quote:
People who have one normal M type gene and one faulty Z type gene are 'Carriers of A1AD'. They don't have the deficiency themselves and usually have sufficient AAT produced by the 'M' gene to protect them against lung disease. They have the phenotype PiMZ.

In white people of northern European ancestry the numbes of those who are "PiMZ" is thought to be between 1:25 and 1:40

and it's thought that only 5% of those with alpha-1 antitrypsin deficiency are ever diagnosed. When I spoke to ADAPT in the UK who run the screening for this condition, they said that they have 700 people on their books which gives you an idea how rare it is (in it's full blown form ZZ).

I find it a fascinating condition,
Quote:
apparently at some point, many thousands of years ago in Scandinavia a single person had a mutation of the chromosome 14 which caused the Alpha-1 protein to mis-fold. As this person had another chromosome 14 that produced normal AAT he wasn't affected.


After looking at this website : http://www.alpha1.org/home/alpha-1-awareness-and-testing it seems in the US there is a test kit that you can order, and there is no charge for the Alpha-1 Screening Program.

** Quick update - got an email from Robin at www.alpha1.org.uk and it seems there is a UK office for the ADAPT program that does free screening for Alpha-1 deficiency, you can get a blood spot test kit by calling this number : 0121 371 3885 **

I remember reading a few cases where people have seen in their biopsy reports on the tissue removed from thier lungs, that they have mild emphysema - in those instances I would definately get tested for alpha-1 antitrypsin deficiency.

* info quoted from http://www.alpha1.org.uk/index.php/research-36/adapt *

I've put a bit more info on this condition in the Medical terminology post


Last edited by Rossoe on Mon Aug 25, 2014 1:24 pm; edited 5 times in total
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Micklebring Reply with quote
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PostPosted: Mon Aug 14, 2006 11:45 pm    Post subject:
 
I've just been tested by my consultant for AAT deficiency type following a general AAT level test. I go for the results in about 4 weeks (due to holidays, the quack's and mine) so this is very interesting. Don't suppose anyone knows the name of the drug in question?
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cathyp Reply with quote
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PostPosted: Tue Aug 15, 2006 9:59 am    Post subject:
 
I have just had a blood test at my GPs for antitrypsin deficiency and am awaiting results.
I am 46, had my first SP 9 weeks ago and surgery 5 weeks ago. I was initially in an NHS hospital where I had a CT scan which showed mild emphysemia. The NHS hospital doctors suggested I should have the antitrypsin deficiency test but wanted the private hospital I was transferring to for surgery to do it (presumably on grounds of cost) but the private doctors thought it unecessary. However my GP recommended it himself of his own accord last week and I am awaiting the results with interest. (It is obviously fairly rarely done because the phlebotomist did not know which colour test tube to put the blood sample in so filled 3 different coloured ones to cover all possibilities!).
My GP says there is no treatment if I am antitrypsin deficient but I am hoping that there may be some nutritional supplements that could help.
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Rossoe Reply with quote
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PostPosted: Tue Aug 15, 2006 10:07 pm    Post subject:
 
Hey guys, I'll be really interested how your results turn out. Fingers crossed you don't have it.

Cathy there is treatment of sorts in the way of replacement therapy with drugs like Prolastin or Zemaira, but it's doubtfull that they are actually an effective method. And at the moment it's only available in the US.

Things are looking promising for the future though, this link shows work on Production of Human alpha-1-Antitrypsin from a bioreactor at university of California !
http://techtransfer.universityofcalifornia.edu/NCD/11238.html


And a chap over on the http://www.alpha1.org forum made this recent comment :

Quote:
I was talking to Prof Lomas a few eeks ago and he doesn't believe that replacement therapy is useful, and he thought it unlikely that NICE would approve it as well.

But, he did outline a really exciting breakthrough that his colleagues have made at Cambridge University.

They need to do more work but have already proved that the approach works. He told me that it was now his life's work to complete this and....it's a cure!

It fixes the malformed protien sheet in the AAT crystal and allows it to move from the liver into the blood.


Micklebring, I'm not sure of the name for Professor Robert Stockley's drug, it's in it's early stages and has probably just got a research code reference for now.


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Micklebring Reply with quote
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PostPosted: Fri Aug 18, 2006 1:37 am    Post subject:
 
Not to worry. I'll keep my eyes and ears open. From what little there is to read on the subject it seems vitamin A provides some of the benefits (albeit it's toxic in high doses) so I'll stick with the multivitamins for now. Back to the head quack on the 28th (although it's moved 3 times) so I'll have more news after that.
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kotoreru Reply with quote
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PostPosted: Mon Aug 21, 2006 5:18 pm    Post subject: Zinc supplements
 
I find this Vitamin A idea very interesting. I have very little knowledge of vitamin interaction within the body (opting to shun the evils of biopathways in my Biology degree), but I have something that may be of interest. Or just amusement.

I was taking Zinc supplements for 2 months before I had my first SP. I immediately stopped taking the pills to rule out any possibility they had caused it - more of a panic at the time. Anyway I had another SP 2 weeks later, and another 2 weeks after that. Then when I was booked in for surgery, I had no more collapsess right up to surgery... It was about a month's wait for my elective op to come up.

Is it possible that Zinc caused my SPs? Perhaps it had some role in forming the bleb that was the cause of my collapses? Or perhaps it was just a coincidence. Either way I dont take the supplement anymore lol

Thanks in advance.
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PostPosted: Tue Aug 22, 2006 7:32 am    Post subject:
 
Personally, I think it's unlikely zinc had anything to do with your SPs. I think we all try and rack our brains for some rhyme or reason to the whole thing as the whole idea of "spontaneous" is extremely unsatisfying. I bet there isn't one of us who hasn't closely examined events in the run up to SPs for some causative factor. I lifted something heavy 3 hours before my last one - was that the cause? Probably not though it may have encouraged a bleb that was on the point of bursting anyway. I wish we knew more about this condition so we could all stop driving ourselves nuts with unanswerable questions Very Happy
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annie Reply with quote
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PostPosted: Wed Aug 23, 2006 2:40 am    Post subject:
 
I had whooping cough 5 years before my first sp and had lots of chest infections after that and have always wondered whether that was a contributing factor - whooping cough is on the rise again (in Australia at least) so it's good to get another jab as immunity doesn't always last that long. It's a very nasty disease you don't want to get on already compromised lungs.
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PostPosted: Tue Sep 26, 2006 7:15 am    Post subject:
 
I'm pretty sure 30 cigs a day contributed to mine. If the AAT deficiency is confirmed on Thursday then I think it's fair to say I'd have got SPs regardless of if I'd smoked albeit it probably made them worse. Most medical people I've spoken to comment on the tall thin men being sufferers and my consultant said he belived it was to do with the way the lungs are stretched during adolescence as discussed somewhere (I think on here?) and he's a pretty top chest quack. Maybe the AAT deficiency, which affects the elastic tissues of the lungs, means they can't cope with rapid teenage growth the same.

I don't know and even if I did I don't think you could prevent it. Testing tall kids for AAT deficiency might identify at-risk individuals but are there enough of us to warrant that? I doubt it. Until there's some treatment for AAT deficiency or its effects there isn't a huge reason to look for it.
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PostPosted: Thu Sep 28, 2006 11:02 am    Post subject:
 
Just back with my test results in my hand. I'm A1AT deficient and I'm a PIMZ phenotype. So, I've got it but it's not the worst it could be. Basically just have to look after myself a bit better and keep an eye on the research.

I wrote to Professor Stockley (do a google on him. Lots of interesting papers that he's written and relevent) who confirmed that the research is in its very early stages. Still, he's got my name, I've got his. Something to look out for in the future.
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PostPosted: Mon Oct 27, 2008 12:47 pm    Post subject: Help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
 
Hya I Am Writing For My Mym he Had Vats Plurectomy 3 Weeks Ago,,She Has Got Pain Under Her Cest And Cant Walk Without Pain Everything She Has Read On The Internet Is Negative Will The Pain Ever Go Away? Crying or Very sad Ergant Responce Please Smile
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PostPosted: Mon Oct 27, 2008 3:01 pm    Post subject:
 
Just for the records, I got tested for alpha 1 and it came back negative, so it doesn't explain anything in my case - I onlyhave the tall thin explanation to fall back on, but interestingly I did grow very fast in my teens over just a couple of years, so I buy some connection with that in combination with chest shape and length of lungs,

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Rich Reply with quote
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PostPosted: Sat Nov 08, 2008 4:23 pm    Post subject:
 
Sounds like good news , I have completed my second open lung thorocatomy yes it has stopped the collapses but I can still feel blebs popping and am still in discomfort hen this happens.

I am concerned the docs have not told me what I have yet just bullous emphysemia all the talk of A1 etc worries me.

My understanding was the only way to combat this lung destroying disease was to run and run and run which stretches the lung and improves strength and CV mechanics.

I am concerned that I have had around 1/3 of both lungs taken away im only 29 and quite fit still but i would be up for being a human guinea pig as I cant really afford to loose anymore lung.
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