Experience with statins??: I know its ot exactly... - PMRGCAuk

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Experience with statins??

powerwalk profile image
58 Replies

I know its ot exactly PMR related - but has anybody got experience of being on statins? My main concern is I think one of their main side effects is muscle pain - I just can't afford to take anything that causes me anymore pain? My GP just told me I need to go on it. Not a happy bunny!!!

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powerwalk
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PMRpro profile image
PMRproAmbassador

What is your history and why does the GP want you on a statin?

I was put on one in hospital 5 years ago. I'd refused before because of my own research which tells me that they do not have any effect in women without a previous history of cardiovascular problems. I don't, atrial fibrillation is not classed in that. They promised me in hospital that they would keep a close eye on me - but within 10 days on half the dose I should have been on I was almost in a wheelchair: I couldn't walk 100 yards on the flat and even the slight slope up to the hospital door left me gasping. It wasn't pain as such but at discharge the week before I had been as fine as someone with PMR and severe myofascial pain syndrome can be. The doctors I spoke to agreed with me as them being the cause. The cardiologist said then it was fine - now she is saying I need a statin because of the raised risk of cardiovascular problems in rheumatoid disease. I don't have rheumatoid disease...

Research concluded that statins are of benefit to women who have had a cardiovascular event and all men. I don't come into that category - do you?

powerwalk profile image
powerwalk in reply toPMRpro

no - no cardio issues - she said my cholesterol is "toxic". (7.18). I relly don't want to add anything with more side effects - I'm not good with meds and side effects. Idon't get much at all in the way of exercise because of the fatuge and working fulltime. Maybe if I could work at it that way? Try to gt some exercise - in all honesty my diet is good. Everyone remarks on my healthy eating. For all the good its doing me!

PMRpro profile image
PMRproAmbassador in reply topowerwalk

Have you cut carbs? That is one of the most effective ways to lower cholesterol.

That is very high - but what are the other figures? My HDL (the so-called good cholesterol) is also very high and obviously that contributes to a high cholesterol level. The triglyceride level is also very significant.

powerwalk profile image
powerwalk in reply toPMRpro

she didn't say what ther other figures are. I've made an appointment with her to chat it through and see if I can try do it with maybe some exercise if I can manage it - though I don't know how I will to be honest - and maybe being more strict with my diet. And monitor my blood tests - might that help do you think?

PMRpro profile image
PMRproAmbassador in reply topowerwalk

I believe very strongly that should be the first approach - it is probably the hard way but... Using the Benecol-type products if they apply may help too - I don't eat most of them anyway! Just walking is probably enough - your name is apt enough! It is easy to add in - park further away from work, get off the bus earlier and so on.

mayoclinic.org/diseases-con...

Good luck with the audience with the doctor!

And btw - I forgot to say before, but high cholesterol IS a PMR-related problem: your cholesterol is high because of the pred.

powerwalk profile image
powerwalk in reply toPMRpro

thank you so much.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi powerwalk,

I’ve been on statins since my late 50s - high blood pressure runs in family unfortunately.

I had problems with Simvastatin (usually the first one they put you on) and Atorvastatin - as did my brother, but we are both fine on Rosuvastatin. Think that’s more expensive so not usually offered first!

Full list with brand name

atorvastatin (Lipitor)

fluvastatin (Lescol)

pravastatin (Lipostat)

rosuvastatin (Crestor)

simvastatin (Zocor)

You can only try, and if you get problems then ask to be changed - but you do need to give it a few weeks to settle.

powerwalk profile image
powerwalk in reply toDorsetLady

Thank you - I'm going to make an appointment with her to see if I can work something else out - maybe exercise if I can manage it and monitor it a bit more closely. I just can't see me takig any more drugs with side effects. Thank you foryour reply - good to know there's options.

powerwalk profile image
powerwalk in reply topowerwalk

Bit of a minefield it would seem. I'm just so afraid of adding to the whole pain thing. Trying to work with all this is just bad enough without adding to it. Thank you so much for your reply.

bowler profile image
bowler

I was started on Simvastatin that gave me muscle pains in the legs, my GP changed it to Atorvastatin , and I have been OK since, I have been on them for almost a year.

barbthy profile image
barbthy

I have been on statins since 1988 when my cholesterol was 345 and it is familial. Started on mevacor ( only one at that time). Have been on simvastatin for at least 20 years with no side effects and my cholesterol stays under 200

powerwalk profile image
powerwalk in reply tobarbthy

Gosh there's so many different ones. Thank you so much foryour reply.

-xtine profile image
-xtine

With a familial tendency to high cholesterol, I was put on statins some years ago. I tried 3 different statins. After about 3 months, with all of them, I began to get severe calf cramps in the night for some minutes. Eventually, I was put on Estimibe, which I was told is like a statin, and I have no further problems and my levels are down.

powerwalk profile image
powerwalk in reply to-xtine

Oh thats good at least. It seems like a bit of a minefield - also just read this "Prednisone

is a glucocorticoid that is used to reduce the swelling, warmth, and tenderness associated with many inflammatory conditions. Despite the relief they may give to you, they can raise triglycerides, LDL cholesterol levels, and HDL cholesterol levels. It doesn't take long to see a substantial rise in cholesterol levels": - So I don't know how you get around that - one thing causing something else and taking something for that and where does it end.

Ruadh profile image
Ruadh in reply topowerwalk

There is an alternative, Red Yeast Rice.

The Truth About Red Yeast Rice for Lowering Cholesterol

consumerreports.org/.../the......

Mrs-CJ profile image
Mrs-CJ in reply toRuadh

Yes, I know of 2 people who successfully use red yeast rice.

powerwalk profile image
powerwalk in reply toMrs-CJ

Oh will look into this - thank you both

PMRpro profile image
PMRproAmbassador in reply toMrs-CJ

Which actually contains the same stuff as lovastatin but in unmeasured amounts.

mayoclinic.org/drugs-supple...

powerwalk profile image
powerwalk in reply toPMRpro

Oh thank you.

Primarose profile image
Primarose

After a routine blood test in March my doctor told me the cholesterol was a bit high and mentioned statins. When I checked my on-line meds he had added Atorvastatin and also Clopidogrel and zapped the Aspirin.

When I saw him last week he asked how I was getting on with the new meds, I told him that I was frightened to take them, I've had enough side effects with the preds. He didn't seem too concerned.

What I don't understand is that you have to follow a low cholesterol diet while taking the statins so I can't see the point of taking them in first place. I queried this and my doctor just shrugged his shoulders.

powerwalk profile image
powerwalk in reply toPrimarose

Crikey - yeah - I hae an appointment to discuss this with her (GP) - I just don't see me doing statins if I can help it - and also as Ijust said above - the Pred can cause your cholesteral to rise. No that I see myself off that in the very near future. Thank you so much.

Primarose profile image
Primarose in reply topowerwalk

I had to remind my doctor that the pred can cause a rise in cholesterol. I'm hoping that it will go down the further I reduce. I don't eat hardly any saturated fat, my blood pressure is well low and I try to walk at least one mile per day.

No one can force me to take it.

powerwalk profile image
powerwalk in reply toPrimarose

Well I've been told I have the blood pressure of a 20 year old so thats not an issue. Yeah going to have to sort this. Will see her tomorrow evening. I just can't afford to take more pain inducing or brain fog meds. I will talk about trying other routes if I can. Thank you.

Ruadh profile image
Ruadh in reply topowerwalk

You don't have to take the statins. Remember, that doctors world-wide have to follow 'guide lines'. They may prescribe, but up to the patient to 'take'. No one is forcing any patient to 'take' ! Discuss where you are with whatever, and keep to your stance.

On that theme. Remember to include CoQ10 Ubiquinol with either statins or red yeast rice. Any cholesterol lowering drug, med, alternative will obviate uptake of CoQ10. Needs to be upped, supplemented. CoQ10 is considered important for better health, especially in the older person.

Grants148 profile image
Grants148

Hi power walk,l had a lot of leg pain and ‘ brain fog’ when l was given atorvastatin,l just did not feel myself at all and felt very lethargic,this was just taking it for a couple of weeks.l was given pravastatin instead and felt fine for a week,then a very red rash appeared all down my arms and across my chest and l was told l am allergic to statin.Needless to say l am unable to take them but l know people who do and are feeling fine.l can understand you not wanting to take them,my cholesterol was 7.3, which did rather worry me,but l do not think that they seem to be prescribing statins so much now because of possible side effects.My husband reduced his cholesterol down to 4.5 ,by taking Benacol products and was never prescribed statins.l try to eat sensibly ,although l do love butter and cream cakes ! The last time l had a blood test it was 5.8,l think it can depend on the things we eat and can vary ,my friend’s was 8 .5.very scary,she is taking statins.l think that you will be OK taking them as long as they are the right ones for you,l am sure your doctor knows best,and some people have a high cholesterol however much they try to have a good diet.l wish you all the best,please let us know how you get on.

powerwalk profile image
powerwalk in reply toGrants148

Just repeating my reply as I don't think it went to you. I will post how I get on with GP visit. Thank you.

Ruadh profile image
Ruadh in reply toGrants148

I have a friend who was 8.5. She has reduced to low level cholesterol by diet alone.

On the other hand, the husband of a good friend, who never had high cholesterol, was put on statins following a heart attack and stent placement. His memory is appalling and he looks terrible. But, he is frightened to stop taking the statins. Sad.

powerwalk profile image
powerwalk in reply toRuadh

Oh lord - yeah thinking of trying the stricter diet method maybe. Though if its the pred thats making it worse I don't know how much good its going to do. Can only see how it goes. Thank you.

powerwalk profile image
powerwalk

I will - thank you so much.

Ruadh profile image
Ruadh

Why does he want you to go on statins ? Apart from the side effects...they don't stop heart attacks. Brain needscholesterol, push C. out and one could be inviting possible even more side effects.

Need to know more about statins, suggest reading Dr Malcolm Kendrick on the subject. He has a blog, and has been addressing the 'causes of heart attacks'. Plus, the educational and perceptive comments from members are certainly worth while. He is superb, and the comments well worth taking in. Has also a couple of books out on the subject.

It is suggested that women eschew statins, unless they have heart problems. Also suggested that men should take thm. No. But, like women, only if already have heart problems. Comes back to 'statins do not stop heart attacks' ! Inflammation causes heart attacks, scars the inside of arteries. Cholesterol in the body then goes to help lay the inflammation, but does not cause.

Better information, see Dr Kendrick's site.

powerwalk profile image
powerwalk in reply toRuadh

thank you I will. My cholesterol is coming up as very high. But the pred can do that. My blood pressure is perfect.

Ruadh profile image
Ruadh in reply topowerwalk

Kendrick's site is huge. Packed with information, much excellent and powerful well researched reading. Let me know what you think - start with the latest blog, otherwise you will never get to the end from starting at the beginning ! Comments and in depth further discussions, can run to over two hundred... Or, can check out one of his books. But for myself, I enjoy the erudite and in the main, medical based, discussions. I leave it with you. But, stress is not good for the heart . Deep breathing and relaxation. Yes, easy to say <smile> Take care, go well.

Pym1 profile image
Pym1

I had been on statins for many years before PMR struck last year. Was not aware of any particular related aches and pains.

Kingsley09 profile image
Kingsley09

I was on simvastatin for 6 yrs and developed peripheral neuropathy which effected my balance so I now have to use a tri- walker so I stopped taking simvastatin a few years later I developed a fibrillation so once again the dr wanted me to take rovastatin and within 5 wks I developed aches all over my body so she said it maybe polymyalgia and has referred me to a rheumatologist but while I’m waiting for the appointment I have stopped the statins and now I’m fine again so I’m trying plant sterol tablets that I get fro. Healthspan and they haven’t given me any side effects but until I get my next cholesterol check I won’t know how they are working, but I’ve heard that they are quite successful, as I’m never taking statins again my whole quality of life has been effected through taking statins

powerwalk profile image
powerwalk in reply toKingsley09

Thank you - yes thats my fear - adding more pain to pains I already have . Thank you.

saffron52 profile image
saffron52

Hi Powerwalk

I was put onto statins about 8 years ago and did not have a good time at all. My cholesterol was high as it runs in my family (father died at age 44 yrs heart attack) I was not overweight and had a good diet. It was classed as familial cholesterol which here in Britain they do not test for but I believe they do in the USA. I tried quite a few statins but always came off after a 6 months with the muscle pain especially in my legs. Then a couple of years ago I said I would try again and they put me onto Rouvastatin (Crestor) I started with taking just three times a week as I was a bit worried, then put them up to four times and eventually I am on them continually. I have had no pain at all from them (I had started them long before my PMR was diagnosed this year). A friend has had the same experience, she had tried statins before and been really ill, after a heart attack and stents she is on Rouvastatin and had no problems at all with them. They are more expensive than the other statins and you will only usually be offered them if you have tried unsuccessfully with the cheaper ones. Hope this helps, take care XXXXXX

powerwalk profile image
powerwalk in reply tosaffron52

Yes - this does help - thank you so much. The more I know the better!

-xtine profile image
-xtine

Correction. Ezetimibe is the drug I take that acts on cholesterol. It works for me

jannie21 profile image
jannie21

Hi powerwalk, I was put on atorvastatin and suffered with really bad muscle pain. I did not realise the connection with the two and my GP said he did not know what was causing the pain and put me on MORPHINE patches !!!!!!!! I tried this for a year but I was no better. My original GP had left the practice so I saw a different one I told him I did not want to take atorvastatin so he put me on rosuvastatin and I came off the patches. I still got the muscle pain and was in agony at times, I could not cope so eventually I told him I wanted to stop statins and he agreed, I have no heart related problems and my high blood pressure is well controlled. Hope this helps but we are all different so the only thing you can do is try, also, I did not have PMR at the time I was in remission. Regards Jannie.

powerwalk profile image
powerwalk in reply tojannie21

Oh that sounds awful. A long time for them to realise it might be the statins causing your issues. But that is why I don't want to go on them. I already have trouble with my legs when I lower the Pred - so adding to the problem is just not something I want to risk. Thank you so much.

jannie21 profile image
jannie21 in reply topowerwalk

I should point out that the GP that prescribed the original statins and morphine was not the brightest spark and was not up to speed with the latest developments, nuff said, Jannie.

ptm2018 profile image
ptm2018

My Rheumy says no. Some Statin experts believe they weaken the muscles and my Rheumy says not good for PMR. I take Co-q 10 and Antarctic oil in its purest form.

powerwalk profile image
powerwalk in reply toptm2018

Thank you so much. Thats very interesting.

Stella3 profile image
Stella3

I am on simvastatin (20mg daily) and have not had any problems with it. I hear that Crestor is one of the best (but I have not tried it and it might be expensive here in the U.S.A. I am not sure). A friend of mine who had a high cholesterol has managed to lower it naturally by becoming a vegetarian. I know that would be hard for some meat lovers, but it has worked for her. Good luck Powerwalk!

powerwalk profile image
powerwalk in reply toStella3

Thank you!

TimeLord profile image
TimeLord

I have been on Statins for years and I do get pain with then, so when PMR came on I cut back on the statins from 40 gm per day to 30 mg per day. My doctor did not agree, but I take one 40mg one day and then 20mg the next day, I cut the 40mg in two.

Have Fun Frederick

sennetta profile image
sennetta

I have done a lot of research about all sorts of health issues and amongst the more enlightened members of medical fraternity there is a very strong feeling that statins are not all they are cracked up to be. Statistics are seriously skewed and yes, while they probably do lower cholesterol, the cardiac events statistics have not reduced to reflect that - therefore this can reasonably be interpreted as showing that cholesterol does not impact on the cause of cardiac events.

Have a look at youtube.com/watch?v=jcnd3us... and other talks by Aseem Malhotra ( a British Cardiologist from Cheshire)

British GP Dr Sarah Myhill also has quite a lot to say about statins and it doesn't make for happy reading.

My understanding is that dietary cholesterol does not impact on vascular cholesterol but carbohydrate does.

My advice to anyone would be do some serious research before you contribute further to lining the pockets of the pharmaceutical companies

Maybe21 profile image
Maybe21 in reply tosennetta

Would add Dr Malcom Kendrick to this this list too.

Ruadh profile image
Ruadh in reply toMaybe21

Definitely add Dr Malcolm Kendrick, specialism, Cardiology. Many papers and publications to his name.

Ruadh profile image
Ruadh in reply tosennetta

Indeed yes. The story behind the development of statins reveals skewed science, manipulation and corruption. Horrifying.

Ruadh profile image
Ruadh in reply tosennetta

Aseem Malhotra is sound. He outlines the fraud behind statins. The history is...and the evidence is : "If you commit crime and crime pays, then, more crimes are commited"! Research misconduct is rife : only 7% of published research is valid !

Strongly encourage viewing this video cast. The revelations are concerning. Listen. Take note. Do your own research.

powerwalk profile image
powerwalk in reply tosennetta

thank you - will have a look at this.

sennetta profile image
sennetta

There's some very interesting reading here aswell -

drmalcolmkendrick.org/

Ruadh profile image
Ruadh in reply tosennetta

Do read the comments as well. The discussions are excellent.

Jazzys profile image
Jazzys

I just went off of a statin to see if there is a difference. I feel better, but I have also started taking two other meds that might affect how I feel.

Perkey profile image
Perkey

Been o statins several years lowered my cholesterol with no ill effects even though take them with my pred

lcove profile image
lcove

I find taking two Co-Q 10 pills helps the muscle pain. I used to have pain as soon as they doubled my dosage, but now with the Co-Q 10, I take twenty mg with no problem. They're inexpensive on Amazon too.

powerwalk profile image
powerwalk in reply tolcove

oh interesting. Thank you.

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