Lamphangioleiomyomatosis (LAM) Lung Disease

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

Lamphangioleiomyomatosis (LAM) Lung Disease

Postby vicki » Sat Nov 27, 2010 10:48 am

Well I have had severe lung breathing problems for 15+ yrs. now, started around 2 wks. after Statins.

I've been so bad lately (3 wks. now) that I have to take my mebalizer to work with me and use it, it didn't work. I have been on Singular, albuteral with a neb machine, Advire, prednisone taper (60 mg down) Kenelog shot. Nothing seems to be working. My doctor finally has decided, after I got mad, to send me to a pulmanary specialist, cartiology, ........ I had an X-Ray the other day (no results yet, sent on to speicalist) Next is a CT scan of lungs.

This article says some women get this lung disease rom taking Statins.
Also it has been released: Statins in lymphangioleiomyomatosis: a word of caution
S. El-Chemaly,* A. Taveira-DaSilva,* M.P. Stylianou,# and J. Moss*
and:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2947144/

I have wrote each and everyone one of the persons that wrote the article: Statins in Lymphagioleiomyomatosis, and told them they are welome to copy all of my doctor visits, lab work, lung function tests......... If I can help prevent other people from going on Statins and maybe save someone, I will try.

Since I already have been diagnosis with Chronic Lymphocytic Leukemia (CLL) Which your Lymphcytes go up ( and mine doubled way back in 2001 or 2002) years ago. I would say the two are tied together, IF I HAVE (and i pray i don't) lamphangioleiomyomatosis (LAM). They both have something to do with Lymphs, is the way I read it.

When I get the results of my tests I will let you all know.

My side-effeects just seem to get more and more, they don't seem to be going away or getting better.

I do have to say my doctor finally agreed with me, she said: " WE THOUGHT IT WAS THE STATINS." To have one doctor admit it was wonderful to here at the time. Now to go on to more specialist and convince them. I am well prepaire, just so they listen and read.

Hope I live long enough to see this through.

CLL (can't say it was CLL yet, Lymphcytes double, needed another test to tell if it was CLL. Problem being no doctor notice, nor did they investigate farther what the reason was for doubling lymphcytes. I was just diagnosed on March of2010 as having CLL, it took Medical doctors 8 or nine years to notice. I also want all to know dispite the lab writing on lab paperwork CLL? and circuling it, the doctor did not pay attention and said everything was fine.

I developed while on Statins: CLL (?) Diabetic type 2, chronic breathing problems, high blood pressure, diverticulitus (worse case dr. ever saw, she said) heart paputations, no energy. ........................the list goes on and on, Oh and someone talked about their skin looking like (best discription) fish scales, mine does too.

Vicki
Vicki
Vicki
vicki
 
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Postby vicki » Sun Nov 28, 2010 7:52 am

after furter reading I also notice lots of men get the serious brathing problems also from statins. ILD. I new in the past other men had contacted me when I posted on other statin forum, their breathing problems after taking statins.

More breathing cases have to have been reported from taking statins then just 162 cases.

I reported this yrs. ago to the FDA, I wonder if the FDA pays attention to all the reports they get.
vicki
 
Posts: 71
Joined: Mon Oct 18, 2010 8:13 pm

Postby lars999 » Sun Nov 28, 2010 1:21 pm

Thanks for that reference, Vicki!!

Now that I am finally approaching my pre-Lipitor levels of physical strength and muscle stamina, I am becoming increasingly concerned about the slow recovery of my aerobic capacity for prolonged physical activity. That reference gives me something to pursue that I might not have found quickly. From quick reading, it looks like this will fit nicely with what I have been able to find about age-related decreases in aerobic capacity.

Thanks again,
Lars
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