My dad has been diagnosed with Parkinson's - effects of statins?
Posted , 11 users are following.
Hi
I might be completely off the mark with this but will give a shot anyway - I am interested in your opinions.
My dad is 73 years old. He has just been diagnosed with Parkinsons Disease. He has been on simvastatins for around 3 years now. The decline in his health has been noticeable for this time. He has slowed down a lot but I just put it down to getting older.
He has always been active and lives a healthy lifestyle - no alcohol, no smoking, lots of daily exercise. But he has slowed down loads.
Now, 1 in 4 Parkinsons diagnosis are wrong - could it be that the simvastatin might, just might, be causing all this?
Yes, lots of his symptoms are pointing towards Parkinsons - for example he has lost lost of movement in his dominant, right arm (or naturally doesnt use it), it does not swing much when walking, has aches and pains (back and hips mainly - but has a history of this), he has lost his sense of smell, and his lips tremour quite considerably when he is resting. He has become shaky. Could these be symptoms of simvastatins? I have done lots of googling and there is of course 100s of google results on the dangers of statins and maybe I am being unrealistcally optmistic but if there might be a chance that it might not be Parkinsons, but there is hope until it can is ruled out.
?I say ruled out - his GP (whichever doctor he sees on any given day) said it defintely is not the statins. By all accounts he was incredulous when my mum asked if it could be the statins.
He replied with pretty much everyone in that waiting room is on statins..(Sorry I can’t use inverted commas – my keyboards delete button and inverted commas aren’t working for some reason..) The same GP who said he has slipped a disc a month or so ago (turned out to be a muscular problem that went after a few days, and said he definitely did not have Parkinson’s a few weeks before that. Another issue here is that my parents are not the type to ask questions and push matters. They will just accept what is being said and take anything that has been told them.
Since his diagnoses he was told that the Parkinson’s nurse would be in touch within days and visits would commence. Not heard a thing yet. I think it is a disgrace. Anyway I digress, sorry.
I could type loads here, but I am aware that it is a lengthy and boring opening post. I am happy to answer specific questions that may help you help/advise me. I just want some guidance here, based on your experience and expertise and opinions
Many thanks for your time.
0 likes, 56 replies
loxie andrew10135
Posted
Hi Andrew, so sorry to hear of your father's issues and my heart goes out to you all trying to make some sense of it all and get a proper diagnosis/treatment. I'm not medically qualified and know very little about Parkinsons, so unfortunately cannot really give you any insight in that direction. I do however know what statins did to me and to close friends and family. Yes, they lower cholesterol, proven fact. Whether this lower cholesterol is in everyone's best interest is however a whole new issue and ball game.
Statins DO cause side effects in many people. In some cases these side effects are themselves devastating and very serious. The effects range widely from person to person but a common theme of muscular pain and degeneration, loss of memory and cognitive function, stomach disorders, headaches, etc., exists.
I appreciate fully how difficult it is to 'argue' the case with doctors.
Best advice I can think of is keep questioning, keep asking for any tests available, keep pushing to get seen by whoever your father is referred to. Take someone along to the appointment, it's often very difficult for the patient to put their case over effectively when they are distressed and not wanting to cause any breakdown in communication with the medical professional. A 'third person' unaffected by the issues will have a much more detached view and can often ask questions more openly. Put some questions onto the Parkinsons forum on here - those with the disease will be more than happy to answer questions on common symptoms, outcomes, etc.
I feel so sorry for you all and I really do hope you get some proper answers and effective treatment for your father.
jackie57606 loxie
Posted
Hi loxie- Great post there . My dad was on statins for 14 or more years I cant really remember - however he was diagnosed with Parkinson's in 2010 as he kep t falling out of bed and lost a lot of movement in his left arm and leg and was falling over .THey did some sort of brain scan I don't know what really he did have done to diagnose this condition - but he was put on Parkinson's drugs . My dad has never ever had any shaking and still doesn't . Before Christmas my dad had a bad fall in the kitchen and went down hill from there - he was taken off about 7 meds on 30 December because he had low blood pressure . One of these meds was statin which i was ecctatic about because I have suspected they cause all of the side effects my dad was having which also include nightmares kicking out in his sleep .
Then he really got bad because he was on mementine for dementia and the doctor took that off him without weaning him off it . In between all of this he was in respite for a week but hated it and it made him worse . We fought for the mementine to be given again and built up from 5-20 ml , he improved so much was walking talking had long and short term memory and was a temporary resident in another care home still is . But then the mementine stopped again for 2 weeks and he was as bad as ever like a zombie doing nothing . It was a mistake from the doctors that the prescription had not been carried on and the staff at the care home did not notice he was not having mementine . It was me that asked to see what meds he was taking and i noticed that for 2 weeks the mementine was stopped . In the meantime my dad had selulitice on his left foot for 4 weeks it was only after 3 weeks he got some antibiotics for it but didn't clear it up . Last Thursday he was rushed to hospital with sepsis and we were told he might not make it through as he has so many health issues he is 81 . On Friday we went to visit him and was sat up smiling eating talking the best he has in months - we were all elated . Yesterday he slept all day and we were worried but I demanded to see a doctor and she reassured us that he is responding to mediction his CT scan showed no internal organ damage , and that he was just sleeping because of the amount of medication he is on .
He is also being moved to the Parkinson's ward in a few days . Me and my brother are going to put to the consutlant that diagnosed my dad about satins and the fact that prior to being admitted with sepsis he was improving had regained the use of his left leg and arm and prior to being taken off mementine abruptly twice was doing so well .
I'm very scared of putting the information forward as i feel intimidated by professionals and don't want to be seen as a busy body .
I'm so sorry for my long post .
loxie andrew10135
Posted
I had posted a reply - with no links or advertising etc but it's been blocked by moderators - no idea why. Hopefully it will appear later. If not, briefly it just said - keep pushing for answers and keep asking questions, dont be fobbed off.
TrishaT andrew10135
Posted
Well I know very little about Parkinsons but I was on statins last year. I didn't get muscle aches and pains but was seriously brain fogged, my memory went, weakness, breathlessness and then my whole body started shaking and wouldn't stop. The paramedic who came out thought I was having a fit which was incorrect but the shaking lasted for over four hours and was extremely frightening. At A&E all my tests were OK and the shaking had stopped so they weren't interested. A couple of days later it started again and this time my GP said she would see me before surgery started if I could get there. My sister managed to get me in the car, got me to the surgery and the GP told me to come off the statins, which I did. No more shaking episodes. I was only on the stains for two weeks but they did so much damage in that time,three months later and I am still not right but much improved.
marco andrew10135
Posted
I am really concerned that some doctors refuse to accept that statins can cause any problems at all.
I'm an 81 year old and have beenon various statins for 10/15 years (not any more) and have peripheral neuropathy which makes it very difficult to walk. After many tests my neurologist could not find the cause which happens in one third of cases. I asked her could statins be the cause and without hesitation she said no. I asked her if she could be 100% sure and she said she could not 'but on the balance of probability.....
andrew10135
Posted
Thank you for your replies. Keep them coming please!
My problem is that I live abroad and I relay any info I find to my mum via FaceTime or Skype. I cannot attend any apointments at the moment.
Could it be the statins? I know you are not Parkinson's experts or medical professionals (maybe you are!)
What do you suggest I do now to advise my parents, and where do I go from here?
I will put the questions on the Parkinson's section of the forum to see what comes back too.
In the meantime, thank you again for your time and contributions towards trying to him me, and more importantly, my mum and dad.
Chilaah andrew10135
Posted
Hullo Andrew.
With your Dad's health issues it is always good to get a 2nd opinion although the medical profession do tend to stick together and rarely step outside the square. They do what they are trained to do which usually ends in prescribing pharmaceutical drugs. You may find it helpful to seek the advice of naturopathic practitioners. There are practiioners out there today who are medical doctors and naturopaths who combine both forms of healing to give the best care available. This could be an ideal option in your Dad's case.
loxie Chilaah
Posted
Very good advice Chilaah. Doctors who are also naturopathic practioners seem much more able to think outside the box and rely much less on just picking a pharmacological easy fix. I am myself going to research this route. I'm getting very disheartening by the fixation with just prescribing a pill in the hope I go away. My last appointment with a rheumatologist left me in tears when she said ....I'm not a surgeon, I'm a pill pusher....her words. If only GPs would listen to patients who after all know their own body better than anyone.
TrishaT andrew10135
Posted
I have a couple of friends who are on statins and who have had no problems whatsoever so they affect different people in diferent ways but I would never take them again. Explain to the doctors what problems you are having and they refuse to even consider that they could be caused by statins, stop taking them and they do their best to persuade you to take a different kind.No thank you. I have been left with severe balance problems which the GP says is nothing to do with statins but I didn't have any balance problems until I started taking them. I am so very sorry I ever took them in the first place but you tend to think that the medics know what they are doing and that they are doing their best for you, not trying to poison you!! It seems a big coincidence that my main symptom was severe shaking and that your father has been diagnosed with Parkinsons.....the only thing I can think of is that he stops taking the statins for a couple of weeks to see if the symptoms improve but I am not in the medical profession so that is only a lay persons view. Get all the advise you can, scour the Internet, There is an excellent group on Facebook called Stopped Our Statins which will give you a good idea of the various problems people have had with them. Good luck.
jani33852 TrishaT
Posted
My husband of 85 has been on Pravastatin for over a decade. During the last few years he has developed balance problems. He exercised atgym and spent a full working day in our studio. He developed carpal tunnel syndrome and had the ops, fine at first.
He then developed a tremor in the right hand, he is lefthanded. We visited the GP who referred him to a specialist on Parkinsons. He was put on Sinemet, but as time went on his walking became worse and he developed postural drop. This was because the drug lowered his blood pressure, as did his blood pressure tablets. In the end, after 2 years observations the specialist told us it wasn't Parkinsons.
One or two other issues but the worse, this time last year was urinary. He ended up in a Care home and then rehab. He got out but with reduced mobility, balance problems and increasing fatigue. Despite this hearted to continoworking in the studio and he had a physiotherapist. I have been concerned about the statins for some time and after a chest infection he became even worse. I contacted the GPS and asked what his cholesterol was 3.2. We don't know why he was put on statins, but when I said I thought he was suffering side effects, he was told to stop taking them. I think they have to do this of you report them.
But, you need to build up what has been removed by the statins, coQ10, this is an enzyme present in cells. The purer form is ubiquinol and more quickly absorbed. In addition I have got him vit b complex. Early days. Only 5 th day on ubiquinol and 2nd on b, but his shaking legs have almost disappeared and he is more responsive and animated. I believe the balance problem is related to the loss of muscle strength and confidence. He has fallen countless times but recovered from these so I hope he will persevere. Just stopping the drug isn't the only thing which needs to be done.
So many people on here seem to have similar symptoms. The Gp tried to put me on statins last year but wouldn't tell me which ones and what the side effects were. He kept pointing to the government advice and told me I could have heart attack. I was 63. My cholesterol was normal.
andrew10135
Posted
Thank you again for your comments.
For now, I will get specific. Has anyone on statins experienced any of the following?
1. Loss of smell
2. Lip tremor (can see it in neck too)
3. One arm "going to sleep", not swinging naturally when walking; reluctance to use that arm even though it is the dominant arm.
4. Ageing - my dad has aged loads in the last couple Of years. In fact, his brother was round on my
Lady visit back to the UK recently and he is 3 years older. You would think he was 5 years younger than my dad now.
(I know all three of these are symptoms of Parkinson's, don't get me wrong, but want to see if anyone has felt the same effects due to statins.
Other symptoms include back and hip complaints, and dizziness but I believe these would be happening anyway (my dad has had ear problems leading to dizziness for decades, and his back has been rubbish for ages too). So, for now, I'll focus on the relatively recent problems (last couple of years).
Thank you
loxie andrew10135
Posted
sara2727 andrew10135
Posted
Hi Andrew
yesterday my 51 year old husband was diagnosed with Parkinsons disease.
it is only today now the news is starting to sink in that I am trying to find information on this.
My husband has been taking statins for 5 years. He started on quite a weak dosage but last December he was moved up to 20mg Simvastatin. Although he had noticed he had tremor in his right hand around August last year, it was definitely since December that I and some other friends noticed he was starting to 'slow down', he also had a bad hip and leg pain all this down his right side and he struggles to do certain things such as write or brush his teeth.
I keep reading about statins and Parkisnons links but as you know the internet can bring up all sorts of stuff as I have also read that it isn't linked. I have asked the GP if its worth him coming off statins but she says to talk to the consultant first as his cholestrol is high, which I will do on Tuesday.
I have read that there are blood tests they can do to check the CK levels to see if statins are a cause of muscle ache and stiffness. I am not sure what that even means but maybe of some help to you.
It is horrible not knowing, I have read so much anti statin stuff today I would love him to stop taking them but I am not sure if I am just clutching at hope.
good luck with your search and please let me know if you discover anything else.
sara2727 andrew10135
Posted
Oh and in answer to your questions:
1. Loss of smell - Weirdly about 2 years ago he could smell smoke for about 6months.
2. Lip tremor (can see it in neck too) - NO
3. One arm "going to sleep", not swinging naturally when walking; - YES
reluctance to use that arm even though it is the dominant arm - YES
4. Ageing - YES
jani33852 andrew10135
Posted
2weeks ago, I contacted Gp to ask what the cholesterol reading was, 3.2. Normal. Once I mentioned side effects he told husband to stop taking them. The coQ10 destroyed by the statins needs to be replaced by ubiquinol, so the muscles can regenerate, I have also added vitamin B complex. After 5 days his balance has improved and he is more lucid. The hand tremor has not gone but did have carpal tunnel syndrome and an op. I hope there is a positive outcome for my husband and your dad. PS he has been working full time in the studio 7/7 but has been extremely fatigued in recent months.