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pete
27th March 2012, 21:25
Hi all,

Just been reading an article about one of most prescibed drugs in the world, and how some people who take statins have similar symptoms to those of MND, and whats more i have not read anything on here that relates to this claim, wondering how many on here take one these drugs, and what if any side effects you have noticed. We all know there are side effects to most drugs ,but if there is any truth in this ?. I for one have justed binned mine .:confused:

michelle
27th March 2012, 22:45
This is quite worrying Peter there seems quite a lot of information out there on this subject. I for oe will definitely be calling mums neurologist tomorrow as she's been on them for a number of years. It seems to be a common practice apparently to prescribe statins to the over 50 s as it was seen as a wonder drug, I myself am always sceptical of pharmaceutical companies claims especially when they're racking it in. I did find this piece of literature issued by Mnda
http://www.mndassociation.org/document.rm?id=1917

Michelle

pete
27th March 2012, 23:07
Hi Michelle,

Thanks for the link ,it pretty much confirms what i was thinking ,I had stopped taking my Atorvastatin ,but after going to the locum for another problem nothing to do with MND, he more or less said i need to stay on them , which contradicts what i now have to do ,thats eat everything thats high calorie and fatty foods to maintain your weight , What i had noticed and so had my neuro proffessor that my progression had pretty mutch stabilized , I know we cant know for sure if its the statins or not and just a plateau in the MND, but i want to find out myself , and if it continues to stay as it is well, have to see about that , I wasnt expecting the Doctor to rubbish Statins being one of the biggest money makers for the big pharmas ,and pretty much almost given out now to everyone as you say over 50, whether they need them or not.

pete

michelle
28th March 2012, 00:50
Pete
) I'm sure statins have some very major medical uses for many people but to coin a phrase " for every action there is an equal and opposite reaction". My philosophy has been not to run with convention but to err on the side of caustion.

Michelle

JONESY
28th March 2012, 12:09
Hi all,

When I first met my MND consultant he asked if I was on a statin and if so to stop taking it. In fact I have never taken a statin.

Chris

pete
28th March 2012, 22:42
Hi all,

When I first met my MND consultant he asked if I was on a statin and if so to stop taking it. In fact I have never taken a statin.

Chris
Hi Chris
Hope your keeping as well as you can be , perhaps you might know why some Consultants seem to give advice about medications and others do not ,He didnt say why you would need to stop ,if you had been taking a Statin ,did he ,and as for yourself was it not needing the wonderdrug, or did you know a reason not to take them , You take care .

Regards
pete

Barry52
29th March 2012, 14:43
Hi all,
I too have been taking simavastatin for 6 years following a minor heart attack. Before I was dx with MND I put the muscle aches down to the statins after reading many reviews of the side effects of this drug. My GP and a neurologist said that the benefits of the statins far outweighed the negatives and to carry on taking them. When a second neurologist confirmed my MND type as PLS I advised her I would definitely give up statins which I did in January and she offered no resistance. I can't say the muscle cramps have improved but in 3 months they have not worsened. One word of caution for anyone else considering this action is to have regular blood tests to check cholesterol levels. If they do go up then a change of diet may be necessary.
Regards
Barry

JONESY
29th March 2012, 16:43
Hi Pete,

I wasn't taking a statin because I didn't need to take one. I was very fit and healthy. They do have a place in medicine for anyone with diagnosed or at risk of any type of vascular disease. I do think,however ,they are over prescribed in the elderly population - that is a personal opinion. I don't know why some consultants advise stopping but not all. They can cause muscle damage.

I am ok but see the consultant on Monday. I plan to ask about a PEG and life expectancy.

Chris

pete
29th March 2012, 20:59
Hi Pete,

I wasn't taking a statin because I didn't need to take one. I was very fit and healthy. They do have a place in medicine for anyone with diagnosed or at risk of any type of vascular disease. I do think,however ,they are over prescribed in the elderly population - that is a personal opinion. I don't know why some consultants advise stopping but not all. They can cause muscle damage.

I am ok but see the consultant on Monday. I plan to ask about a PEG and life expectancy.

Chris

Hi Chris,

Just wanted to wish all the best when you see the consultant on Monday next, and sorry to hear your enquiring about the peg or should i say getting closer to needing one ,For me i think that would be a difficult step , i am not squeamish about much in life never have been , but to have to make that desision when it arrives ,will be very difficult for me ,as for the life issue, I take the view that we all are going to some time in the future, nothing more certain than that, its just a question of when , the team i see seem to re write the estimate almost everytime i go , it seems no one really knows for sure or not willing to tell you if they do ?

All the best

pete

looby
29th March 2012, 22:02
Hi Chris,

Just wanted to wish all the best when you see the consultant on Monday next, and sorry to hear your enquiring about the peg or should i say getting closer to needing one ,For me i think that would be a difficult step , i am not squeamish about much in life never have been , but to have to make that desision when it arrives ,will be very difficult for me ,as for the life issue, I take the view that we all are going to some time in the future, nothing more certain than that, its just a question of when , the team i see seem to re write the estimate almost everytime i go , it seems no one really knows for sure or not willing to tell you if they do ?

All the best

pete
Hi Pete
My husband agreed to having a PEG fitted last week when we saw the team at the QE. Like you he is squeamish and I' m not sure hoe he will cope with it. As you know from my other posts the progression of his disease seems to have speeded up and so he really has no choices left-- now is the best time before he loses any more weight or becomes weaker through a chest infection. It was a very difficult hospital visit. As for statins ... My husband was asked if he had ever taken them on his first visit-- he hadn't.. But gathered he would have been told to stop them immediately. My husband was almost at the end of a three year course of treatment - with hormones - for prostate cancer and because this affects the muscles he was told that treatment must stop that day !!! The fact that he was undergoing this treatment delayed his diagnosis of MND - everyone put the muscle weakness down to the effects of the hormones.

Lyn

pete
29th March 2012, 22:54
Hello Lyn,

Sorry that Roys condition is speeding up , and yes it seems from the guys at the QE , you need to have the peg fitted in advance of needing it and while your fit enough to go with the op, from what others have said its not that bad ,mind you its easy to say that if its not you its happening to, Its just another step i guess and when its time to have mine , well ?, and the chest infections are another thing , with bulbar its even more of a problem because of the swallowing issues and the possibilty of sending fluids or worse into your lungs , I hope your OK , its cant be easy dealing with seeing Roy go through so much, hope on hope things improve for you all soon.

Regards

pete

michtreme
25th July 2012, 08:39
I've read lots of statins side effects and I don't think it's a good option. If ever you plan to take it you just have to take coq10 as well according to this article - http://articles.mercola.com/sites/articles/archive/2010/07/20/the-truth-about-statin-drugs-revealed.aspx

PaulUK
25th July 2012, 16:56
HI Guys,

I mentioned statins in another link on Neurotoxins as possibly being a problem as they lower cholesterol and HDL cholesterol is known to be vital in helping to rid the blood of toxins as it is the transporter. Circumstantial evidence appears to show that a high fat diet can slow the disease and fat people apparently do not get MND, presumably because toxins which the body has to dispose of on a daily basis, store in their fat and not brain, liver, kidney cells etc which they will go to if the individual has a poor toxin cleansing system and has low body-fat levels (because maybe high blood pressure (my brother has it) has damaged kidneys in that person or they are taking statins IMO).

I used to take statins but due to side-effects stopped, and when my brother was first having health problems I asked him whether he was taking statins as his symptoms appeared to correllate with mine. He was not taking statins and never had and thus I then started having serious worries as to the causes. Only a month or so later he was diagnosed with ALS.

magic
25th July 2012, 17:16
My husband has been taking statins since he was diagnosed with heart disease some 15 months before the MND diagnosis. His fatigue is so great that we have stopped taking them recently. Prior to diagnosis a local pharmacist thought his symptoms( fatigue and reduced hand function) may have been due to statins but sadly this was not the case.
magic

pete
25th July 2012, 20:22
Hi Magic,

Yes they have alarmingly similar effects on some, I was taking them after having carotid surgery , they said if the other one furrs up you wont know anything about it , just check out time , Nice eh. well the choice of letting MND do its worst or risk the sudden exit, should the artery block . I have felt a lot better since stopping mine and its taken a few months but do feel a bit better ,will never know for sure if it was statins or just a plateau, Well wish you all the best .

pete

PaulUK
26th July 2012, 12:39
Hi Pete,

In reading that I have done it appears that many people take a supplement Co-Enzyme Q10 (naturally produced in in the liver) to counteract the effects of statins as statins reduce the body's ability to produce it. People with Parkinson's also take it as a supplement as it improves the body's ability to metabolise energy in muscles. Logically it should also help with MND sufferers.


Regards,

Paul

pete
26th July 2012, 19:56
Hiya Paul,

Good to hear from you , Yes Spoke to the MND nurse and she pretty much said word for word what you have , I will try and get some the weekend cant do any harm so I will give it a try,Woulld just love to get a bit of muscle back in the legs. Or is that asking too much ? .

luce
29th July 2012, 01:42
yeah, we read about the statins and mum was taking them but when diagnosed with MND she stoped taking them.
luce

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