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BethU

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Don't know if this should be under research, but I'll post here ...

I was at UCLA this morning being evaluated for the new emotional lability drug study, and while reviewing my med list, Dr. Graves noticed Lipitor, and said that he had read a new study last weekend (I think he said it was a Canadian study) that showed that ALS patients who take statins have worse symptoms than those who don't.

He didn't mention progression ... just the severity of symptoms. He said that people with both heart disease and ALS have to make a decision as to what's most important to them.

My PCP has had me on 80 mg of lipitor a day (the maximum dose), which is ridiculous, as I'm small (5'1") and old. That's the kind of dose you give a 21-year-old linebacker. I had been cutting the pills in half for the last six months, because I felt 80 mg was much too much for me (and my cholesterol is basically OK ... my PCP's just pill happy), and also because I can't swallow them any more. Now I can't swallow the half-pills, either, so for the last month or so, I've just been skipping it altogether.

I'm still taking a low dose of Niacin (which helps increase the good stuff, HDLs).

I don't know what study the doctor was talking about, but this seems to me to be significant. If others do know of the study, this is at least a confirmation that this news is being taken seriously at the clinical level.

(And I FINALLY have a defense when I tell my PCP that I'm through with Lipitor.)

BethU
 

thelma313

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I heard about that study as well. My dad who has ALS was on Lipitor and he was successfully weaned off of it by a holistic doctor who is doing wonderful things for him. His cholesterol levels are normal now. He also takes a bunch of vitamins includeding vitamins C and B and while we know that vitamins and natural supplements will not cure him, he sure does feel better and that is a good thing.

It appears that some of the side effects of Lipitor are similar to ALS symptoms. My dad experienced severe leg and muscle cramping and degeneration and when he went off Lipitor the leg pain went away.

I hope that you feel better being off Lipitor like my Dad did!
All the best to you, BethU!
 

Al

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The study was done in Toronto at Sunnybrook and U of Toronto. My Neuro was involved and took me off statins a year ago. I'll try to put a link for the study here.

AL.
 

BethU

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Thanks, Al!

Beth
 

hopingforthebest

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statins

Hi Beth:

My husband was on Lipitor for years prior to being diagnosed with PMA. His cholesterol was not a real issue but was put on Lipitor for his Trigilerides, which they also were not that elevated.

Lipitor, as I was told, is the big gun in statins. But when it first came out and the drug reps (my son was one of them) were trained to push and push the Lipitor. Also, the company that promotes the Lipitor has a reputation of getting their drugs to market real quick. Which leads me to believe that more study might of been needed before FDA approval was given.

In any case, I think the majority of the PCP and Cardiologist see such great results with the Lipitor (it literally cleans the artery and waxes it clean) that this certainly became the statin of choice. That is why we see so many ALS patients that had taken or take Lipitor. I actually gave my husband his Lipitor every 3 days. When his symptoms began, I stopped the Lipitor immediately. His PCP later put him on Crestor but we even stopped that.

With all drugs, there is a risk of side effects. I pray that this disease is not related.
:(
 

BethU

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I hope there is no connection between the start of ALS and Lipitor ... it doesn't sound likely, as ALS has been around for a long time. But if statins make the symptoms worse, that's a big warning flag about progression, I would think.

I am glad to go off it! (Although my Canadian pharmacy will be losing a good customer! :))

BethU
 

Jennifer51

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441
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PALS
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03/2008
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Don't know if this should be under research, but I'll post here ...

I was at UCLA this morning being evaluated for the new emotional lability drug study, and while reviewing my med list, Dr. Graves noticed Lipitor, and said that he had read a new study last weekend (I think he said it was a Canadian study) that showed that ALS patients who take statins have worse symptoms than those who don't.

He didn't mention progression ... just the severity of symptoms. He said that people with both heart disease and ALS have to make a decision as to what's most important to them.

My PCP has had me on 80 mg of lipitor a day (the maximum dose), which is ridiculous, as I'm small (5'1") and old. That's the kind of dose you give a 21-year-old linebacker. I had been cutting the pills in half for the last six months, because I felt 80 mg was much too much for me (and my cholesterol is basically OK ... my PCP's just pill happy), and also because I can't swallow them any more. Now I can't swallow the half-pills, either, so for the last month or so, I've just been skipping it altogether.

I'm still taking a low dose of Niacin (which helps increase the good stuff, HDLs).

I don't know what study the doctor was talking about, but this seems to me to be significant. If others do know of the study, this is at least a confirmation that this news is being taken seriously at the clinical level.

(And I FINALLY have a defense when I tell my PCP that I'm through with Lipitor.)

BethU
Hi BethU...jennifer51 here..we have been in contact a bit.....slightly off the thread...but you mention that you cant swallow tablets any more....I had the same problem, so used thick yoghurt, which helped for a while but not any longer...now I make mashed potato
(creamed or whipped I think you may call it) and I can now take much larger pills...that I used to take with water a long time back. Or I make a british dish called cauliflower cheese...basically well cooked cauliflower with a cheese sauce on it. I find that helps with most drugs now. AND I wanted to ask you...you seem to be doing quite well with your progression...any tips on how you have done that...that is if any of us have any control over progression.! I went to the mnd clinic yesterday and they said I was doing well...but my first symptoms were in Jan of this year..I waited 2 months before going to the gp and was diagnosed at the end of march.. I make sure I do at least half an hour exercise a day...gentle...either on treadmill or swimming and I am now trying to eat mostly fresh fruit and veg and I am on riluzole. My speech is just ok, walking and stairs are already getting difficult. You seem to be doing much better. I seem to remember you saying you have had this for two and a half years, but my nuero only gave me up to 3 years anyway.....what does he know....will HAVE to prove THAT wrong
and hey I love your sense of humour
 

BethU

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Hi BethU...jennifer51 here..I make a british dish called cauliflower cheese...basically well cooked cauliflower with a cheese sauce on it. I find that helps with most drugs now. AND I wanted to ask you...you seem to be doing quite well with your progression...any tips on how you have done that...that is if any of us have any control over progression.! I went to the mnd clinic yesterday and they said I was doing well...but my first symptoms were in Jan of this year..I waited 2 months before going to the gp and was diagnosed at the end of march.. I make sure I do at least half an hour exercise a day...gentle...either on treadmill or swimming and I am now trying to eat mostly fresh fruit and veg and I am on riluzole. My speech is just ok, walking and stairs are already getting difficult. You seem to be doing much better. I seem to remember you saying you have had this for two and a half years, but my nuero only gave me up to 3 years anyway.....what does he know....will HAVE to prove THAT wrong and hey I love your sense of humour
Hi, Jennifer ... boy, you got me with the cauliflower! I LOVE cauliflower ... and cheese, too? Yum!

I feel really, really lucky that things seem to be progressing fairly slowly. (Knock wood!) So far! My major concern is to stay away from hospitals, as every time I am in one and anesthetized, even lightly, my symptoms get drastically worse. For this reason only, I am concerned about the feeding tube being placed.

I "sound" much better online than I do in person, as my speech is quite impossible, although somehow, people (except my husband) still understand me most of the time if they concentrate. And the weakness is slowly increasing in my left arm/hand, but this is still pretty slow. Of course, there is no guarantee that this rate of progression will last.

The first neuro I saw at UCLA told me to concentrate on gaining weight ... she said it has been proven to work even better than Rilutek at slowing progression, and that together with Rilutek, it really makes a difference. That was in June, and I have gained 9 pounds (half a stone?) since then, drinking ensure milkshakes with massive amounts of ice cream and protein powder. And chocolate sauce. Actually, I hope I stop gaining now, as I loved being bony! (I had lost 24 pounds since it started, and I DON'T want them all back! Nine is more than enough!)

I was also drinking fruit smoothies with ensure, tons of blueberries and other fruits, and a variety of odd ball liquid supplements, but I had to stop that last week, as suddenly I couldn't stand the taste any more! I can only stand to eat one or two things at a time, and right now it's chocolate shakes and whole wheat toast. Go figure.

I stopped taking Rilutek after three weeks because it seemed to make my symptoms worse. I do understand that it slows progression, but I'm thinking of short-term comfort rather than long-term outcomes in everything I do.

This is my hunch, unsupported by any medical knowledge. I think I've got a wierd variant of ALS. I have symptoms of other neuro diseases in addition to ALS, which involve double vision and also FTD (dementia). One neuro and a speech pathologist have said they think I have FTD, and I think the symptoms are pretty clear that I do. I will be exploring this with the speech pathologist soon.

So I think I've got "ALS+" ... there are other things going on in addition to ALS, but so far, it is all happening slowly. Whether there are three neuro diseases appearing at once (ALS, PSP, FTD), or just one strange variant of ALS, I don't know. I don't think labels matter that much, actually. It's all just MND.

The PSP (Progressive Supranuclear Palsy) organization wants patients to donate their brains to research. I'm tempted to tell them they can have mine right now! I'd be glad to swap it for a cauliflower smothered in cheese :) !

It sounds to me like you're doing a really, really appropriate program, with good nutrition, and very healthy exercise. I had to give up the treadmill two months ago, as even a slow 20 minutes left me exhausted for a week, but I am still doing a modified Pilates once a week, with no resistance, only range of motion exercises. Everything I've read says that what you are doing is exactly right.

The only advice I have is to EAT! Shovel the calories in! And that "three years" stuff they told you is a bunch of hooey! Good lord, there are tons of people on this forum with much, much longer than that. And you're going to be one of them!

Good luck ... keep up the good work!
BethU
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
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Hi, Jennifer ... boy, you got me with the cauliflower! I LOVE cauliflower ... and cheese, too? Yum!

I feel really, really lucky that things seem to be progressing fairly slowly. (Knock wood!) So far! My major concern is to stay away from hospitals, as every time I am in one and anesthetized, even lightly, my symptoms get drastically worse. For this reason only, I am concerned about the feeding tube being placed.

I "sound" much better online than I do in person, as my speech is quite impossible, although somehow, people (except my husband) still understand me most of the time if they concentrate. And the weakness is slowly increasing in my left arm/hand, but this is still pretty slow. Of course, there is no guarantee that this rate of progression will last.

The first neuro I saw at UCLA told me to concentrate on gaining weight ... she said it has been proven to work even better than Rilutek at slowing progression, and that together with Rilutek, it really makes a difference. That was in June, and I have gained 9 pounds (half a stone?) since then, drinking ensure milkshakes with massive amounts of ice cream and protein powder. And chocolate sauce. Actually, I hope I stop gaining now, as I loved being bony! (I had lost 24 pounds since it started, and I DON'T want them all back! Nine is more than enough!)

I was also drinking fruit smoothies with ensure, tons of blueberries and other fruits, and a variety of odd ball liquid supplements, but I had to stop that last week, as suddenly I couldn't stand the taste any more! I can only stand to eat one or two things at a time, and right now it's chocolate shakes and whole wheat toast. Go figure.

I stopped taking Rilutek after three weeks because it seemed to make my symptoms worse. I do understand that it slows progression, but I'm thinking of short-term comfort rather than long-term outcomes in everything I do.

This is my hunch, unsupported by any medical knowledge. I think I've got a wierd variant of ALS. I have symptoms of other neuro diseases in addition to ALS, which involve double vision and also FTD (dementia). One neuro and a speech pathologist have said they think I have FTD, and I think the symptoms are pretty clear that I do. I will be exploring this with the speech pathologist soon.

So I think I've got "ALS+" ... there are other things going on in addition to ALS, but so far, it is all happening slowly. Whether there are three neuro diseases appearing at once (ALS, PSP, FTD), or just one strange variant of ALS, I don't know. I don't think labels matter that much, actually. It's all just MND.

The PSP (Progressive Supranuclear Palsy) organization wants patients to donate their brains to research. I'm tempted to tell them they can have mine right now! I'd be glad to swap it for a cauliflower smothered in cheese :) !

It sounds to me like you're doing a really, really appropriate program, with good nutrition, and very healthy exercise. I had to give up the treadmill two months ago, as even a slow 20 minutes left me exhausted for a week, but I am still doing a modified Pilates once a week, with no resistance, only range of motion exercises. Everything I've read says that what you are doing is exactly right.

The only advice I have is to EAT! Shovel the calories in! And that "three years" stuff they told you is a bunch of hooey! Good lord, there are tons of people on this forum with much, much longer than that. And you're going to be one of them!

Good luck ... keep up the good work!
BethU
Hello, just to make sure of the recipe..it is cooked cauliflower and make a white sauce..(bechemel) and add as much cheese as you like...in fact I use it with all sorts of vegetables and fish as well..it does down nice and easy and I have found it brilliant for even larger pills. I must admit I was told NOT to loose weight...I am slightly over what I should be for my height...but I thought loosing some would make it easier for me to keep carrying my own weight if I weighed less...I can still remember how good it felt about 20 years ago when I weighed 110 pounds....
They told me bulbar onset was 3 years if you are lucky and no one has survived more than 5...well they did not recon on me...I have ordered at least 10 to start with, plus more if I get on a trial....
I have similar veiws to you as to mnd...I reckon the neuros just dont know all the varients so just put you into a box that seems to fit...then they might move you around a bit to another.....appropriate? box....But my philosophy is that we have what we have, whatever THEY call it...so what is in a name...unless the right name for it has a cure of course... I have been looking up about diets..someone on here was saying about a type of glutomate diet (or cutting out MSG.s) then I looked up the diet they use for epilepsy...then some people can control their diabetes with diet.... I really think that there must be something in all this and the way we mess with chemicals in what we eat. I must be one of the really lucky ones as the minute I started Rilutek I noticed a big improvement in my twitches...making them ALMOST bearable, and so far no side effects.....Keep up your slow progression. Thanks for the reply
jennifer51
 

rose

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My PCP has had me on 80 mg of lipitor a day (the maximum dose), which is ridiculous, as I'm small (5'1") and old.

BethU

Beth, I'm sure your sense of humor helps many get through their day :)

Al, thanks for providing the link to the study.
 

Al

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Joined
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Hey folks. Could you do us guys that are using assistive devices a favor and not include the message you are responding to in your post. It makes for a lot of unnecessary scrolling to read the posts. A simple, Hi Mary etc should catch the person's eye. My right finger gets tired fast scrolling. Yes I know the arrow keys work too.
Thanks.

AL.
 

BethU

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It's a deal. That was some report on statins, by the way!

BethU
 
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