I’ve been advised to take statins due to high cholesterol levels of 7.0, Serum triglycerides 2.3, HDL 2.5, HDL ratio 2.8, LDL 3.4, non HDL 4.5. I’m reluctant to take more meds but I’m unclear of the meaning of all the results and if I should take statins or not. I’ve read some articles stating that statins are basically a waste of time. I’m also concerned about some side effects including muscle and joint pain, I’ve got enough of those now and how on earth would I differentiate between PMR pain and side effects of statins? I’m sure that there are others who have been advised to take statins and wondered what they decided to do?
Statins & Steroids: I’ve been advised to take... - PMRGCAuk
Statins & Steroids
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Griggser
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Hello Griggser lovely to know you are still here. Sometime ago Iwent to see one of the male doctors at our surgery about something else entirely and he looked up my blood results and decided the same thing. I needed statins! I said no thank you, having in the past read up about them. Also I did say, I understood that surgeries were encouraged to prescribe them as they got financial rewards in doing so. No comment ! Anyway, we had been down this route many years ago with my husband. Also my sister who used to be an anaesthetist told me a long time ago, that a number of her patients told her exactly the same thing, that they were on statins and had pains in their muscles. Interestingly, more recently, she was told she needed statins! Again she said no thank you! She addressed the problem by eating certain things ( can’t remember what they are! Certain yoghurts etc I think) and got her numbers down, so she was happy. I’m sure others will be along with more help. Anyway, how are you? How is your shingle pain? I do hope much better.
PMRproAmbassador
The financial rewards bit doesn't apply here and it really depends on the doctor. The first time I had statins smuggled into the list while I was in hospital I was very reluctant - I had no history of cardiovascular disease, just atrial fibrillation which is an electrical problem, and like all of us, with PMR I had more than enough muscle aches and pains. I was assured they would monitor me closely. Within 10 days I could barely struggle up the less than 50m gentle slope from the road to the back door of the hospital. And that was on a half dose. I stopped it first and discussed it with the cardio doctor second. The weakness started to improve within a week or two but it was months before I was back to the state I'd been in when discharged. They hadn't done any monitoring though!! The cardio agreed with me - there was no proof they prevented first CV events in women with no history of such, the situation changed after such an event and they work for men.
Just over a year ago I had a bit of a hiccup with the medication (a non-specialist physician messed about and tried to stop my other medication because it "wasn't doing anything") I booked an appointment with cardio but it wasn't my usual very laid back doctor and the spare insisted I try a statin again as the cholesterol was too high. I was fine for 2 weeks and thought I'd got away with it and then I had a massive PMR flare. I took no more. So that resulted in the introduction of tociizumab/Actemra - - and it raises cholesterol and BP! My BP is actually lower but the cholesterol has gone up. The rheumy has put me on ezetimibe - no idea if it has done anything, will find out next month!
That said - some people take statins and have no adverse effects, Some have problems with one but not another, so you have to try to find out. But after the last year after the second failure - I'm really not willing to try another.
Pro, did you get your cholesterol checked yet on this new drug? Hope you don't mind me asking, I got a text this morning to "go in to discuss my high cholesterol". Can't keep having this conversation with them!!! Do you feel any adverse affects from it?
Yup. It had been 200, on Monday it was down to the 160s, The cardiologist was fine about it - though it hadn't been her who dished out the Ezetimibe, can't say I can identify any adverse effects. I'm being referred for an ablation - see what the big cheeses in Bozen think.
Thats good its going down, right direction! My heart arteries were checked for calcification and there was none, nought on the scale. So wherever the cholesterol is my heart bits seem to be ok. I just cant fathom taking anything that might give me more muscle pain. Hope youre not too long waiting for your test. Thanks for reply.
DorsetLadyPMRGCAuk volunteer
There are lots of posts on this subject - many for, many against….
Your overall reading is quite high, but there are things you can do to lower it before the need for statins - but probably sensible to consider if you have a history of cardiac issues, but can’t recall you saying so.
Maybe have a look at BHF site -
Hi Griggser, I have commented a few times on Statins, and as said some hate them some have no problem. The first two I tried gave me serious muscle pain but the third, Rosuvastatin, has given me no problems at all and I was taking them long before PMR. Only on a very low dose of 5mg/day.
Hi Griggster. I hope you don’t mind me adding this.. it’s just some info for the bigger picture of things. The last time I had a routine cholesterol check (6 months ago) my overall reading was 6. The GP I spoke to said that in the past that would have been considered high. However she went on to say that looking at my past cholesterol readings (over 8yrs), my readings have always been around 6. The lowest has been 5.5. She said that this seems to be what my natural cholesterol levels are and no need for a statin. I have a very good diet and take exercise daily. It’s possible that had I spoken to a different doctor I may have had a different response! 🤔
Hi Griggser,
I have been on statins for a long number of years with a couple of breaks in between times.
It's fair to say that I've experienced a few very minor side effects from time to time, but nothing really significant.
Anyone on statins (or any medication for that matter) will have their own individual experience with it. No two people will react the same because our medical circumstances and individual life situations will all be different.
I know firstly that we all possess our own natural level of body cholesterol which generally won't alter hugely no matter what we do. However, when I was first diagnosed with high cholesterol many years ago, I did actually manage to reduce it significantly through adjusting my diet, taking regular exercise and eating a daily plant stanol yogurt.
The discipline required to maintain this though became completely unsustainable and impacted on my life in ways I hadn't expected. This is probably why self-management of cholesterol is thought to rarely work.
Much has been said regarding the efficacy of statins and whether taking them is worthwhile or not. I personally feel this is an individual decision only you can make as you'll discover there are as many people who are anti statins as there are pro statins.
You have to weigh up what the greater risks to you would be should you decide to take them or decide to refuse them.
My cholesterol has always been high, even as a teenager. I've ignored it to date as my 'good' cholesterol is also high (about the same as my 'bad'). However, the last time I visited my GP she said I should really try to get it down despite the fact that I eat really sensibly. I've said I'm unhappy with taking statins so she's offering me an alternative medication which isn't a statin but will get my cholesterol down. She hasn't told me the name yet but I'm due to visit her within the next two weeks....
Well, if it works let the forum know -and its name please….it’s a common question.
Will do....
I take Rapatha which is not a statin. It works pretty quickly. I cannot take statins as they cause severe muscle pain for me. The only problem is here in the states it’s expensive and my insurance will only pay 40%. It costs me a little over $300/month. I have no choice right now. It runs in my family and Actemra has made it worse
Hi Griggser, similar readings to you at 6.9 last summer sent the endocrinologist into a spin. It’s been around 5.6 for years. I had a long phone chat with a locum who seemed upset I wasn’t keen for all the reasons we have read about here. Then I happened to be talking to my usual GP about vertigo & mentioned I was very undecided about statins. Somehow she reassured me & we decided to leave it for the moment. I’m probably putting my head in the sand here as my mother & grandmother had strokes at 58. My BP us ok. I’m swopping to the Truro GP soon so will discuss again with them. Good luck with your decision it really is difficult, Hope your move has worked for the best x
Yes, I’m a statin and prednisolone user for different conditions. I’ve not noticed any reaction from statins.
I take both statins ( Simvastin 20mg) and prednisone (12.5mg atm but been above 10 for 3.5 years) having started the statins 4 months ago. I haven't yet noticed any side effects from the statins but they have certainly reduced my cholesterol levels which had become quite high. Total 7.9 HDL2.6 LDL 4.7 Tri 2.7 after 4 weeks I was at Total 6.3 HDL 3.1 LDL 2.68 Tri 2.6 I will have another check up in March. The Rheumatologist was aware of possible pains and it was she who prescribed them to avoid potential other issues but did say to go straight back if I had any side effects. There is a plant/rice based statin I can take here in Spain but it is very expensive so trying this first.
If you would like some up to date info maybe have a listen to Dr Paul Mason on You Tube. He is the doctor that looks after the Australian Olympic Team. He has a lot to say about statins. Good Luck which ever way you choose to go.
Thanks, I looked him up yesterday and liked his approach- lots of interesting stuff. Amazing how the tests trials and statistics are skewed to produce the results they wanted. How can we ever believe them?
Hi Griggser, my cholesterol has definitely increased since I started prednisolone and I’m sure I’ve read somewhere that prednisolone can increase your cholesterol?? My good cholesterol is better than my bad and I exercise and have a very healthy diet, apart from my liking of white wine!
Difficult to know what route to take as I have also had friends who have suffered aches and pains as a result of statins but there are now so many out there you can try another one. It’s often the standard issue of statins without thorough discussion that frustrates. My GP is great and we go through all the detail so at the moment I’m not on statins! Good luck and happy new year.
I'm like you, exercise and have a healthy eating plan. I suspect my high cholesterol is genetic. However, I have also read articles (can't put my finger on them at the mo) that say the older you get, the better it is to have higher cholesterol. Go figure.....
Hi, Well I've been researching statins recently- my cholesterol went from 5.5 to 7.1 in the 2 years I've had Pmr. Plus I've developed furred up arteries as well.
I started on a statin as I was terrified and fed up with arguing with the doctor. Within 2 weeks I could hardly lift my arms - could have been the statin could have been my taper...
Then I saw another doctor for an asthma check. She said 'come off them' 'we need cholesterol '. She recommended a book - it is fascinating and says basically we need cholesterol. The problem is sugar, processed oils and margarines. Cut them out and eat healthily.
Apparently the body uses cholesterol to repair inflammation in the arteries. It also uses it to produce cortisol. No wonder it goes up with Pmr!
The book is 'Put your heart in your mouth' by Dr Natasha Cambell-McBride
There are lots of Doctors against statins - Google it.
Good luck with it all!
In addition to listening to Paul Mason, check out Malcolm Kendrick's book, The Clot Thickens about statins and heart disease. Not only a good, informative read but he's witty to boot!
Hi.....I managed to bring my cholesterol down from 7.1 to 6 when I took 90% of dairy out of my diet. My cholesterol levels pre GCA were always 5 but as soon as I started on Actemra they shot up to 7.1 As I have Microvascular Angina I knew this was dicing with death - so to speak, so I decided that as I wanted to live the first line of action was 'you are what you eat' so hence my break with dairy, and it worked. On the other hand my OH has a genetic factor - High Lippoprotein A which means he was born with high cholesterol. This has given him a deep vein thrombosis at age 54, prostate cancer at age 65 and the risk of heart disease. This genetic factor was only discovered by 'science' last year. So, he too has been on my cholesterol diet and for the first time in his life his cholesterol has defied his genetics and reduced !!! Just saying the correct food can sometimes really help. Good luck.
Amazing! Was it just eliminating dairy or were you taking statins as well?
No statins or any heart meds as they disagreed with me and I promised my cardiologist that I would alter my diet and bring it down and if that didn't work then he would have to think of something else that I could take. 12 months on and so far so good. I also introduced lots of green leafy raw veg, beetroot, pomegranate juice and banana in a daily smoothie which tastes lovely.
Sounds great! Are you with a nutritionist or just on your own?
Just on my own, however I have always been interested in the gut microbiome. I had IBS for most of my life and several years ago I had good gut bacteria treatment by a gastroenterologist and it worked amazingly. Hence my interest in "you are what you eat" started then. When I got GCA (from an iron infusion I should never have had because of my genetics) I had plenty of time to read all about how our gut and what we eat influences our immune systems.
Hi griggser
How much exercise do you do?
Also, Vegans have low cholesterol as our diet has nil cholesterol.
All the best
Persevere99
You don't have any dietary cholesterol but in fact there are many dietary and non-dietary factors that affect the risk of high cholesterol, including some that we can’t influence like our age, family background and genes. Most cholesterol in the body - which is essential for life - is produced by the liver.
Thanks.
Yes, a vegan diet, with low saturated fat and nil trans fat is one way to keep cholesterol in check.
My total cholesterol is 2.8 and LDL 1.8
HDL is at the bottom of the range though at 1. I have read that this maybe a vegan issue? Unsure why.
Agreed, the liver makes all the cholesterol we need.
Yes, I have read about familial hyper cholesterol. Unsure why that happens.
Thanks
Persevere99
"familial hyper cholesterol. Unsure why that happens"
It's in the genes ... A genetic fault changes the way cholesterol is metabolised
cdc.gov/genomics/disease/fh....
Thanks
hello again Griggser. There has just been mention of statins on the news. Studies done, no doubt funded by the statin manufacturers. Anyway, it reminded me of the fact that a leading cardiologist had written in fact a couple of books ( maybe he has written more now) about statins. The first is called the Pioppi diet, which I vaguely seem to remember PMRpro having mentioned. Also one published in2021 called A statin free life. Both by Dr Aseem Malhotra. I honestly can’t remember what is said in the books ( I have got both in my stash!) but obviously especially the second one, he goes into why/how you can lead a statin free life.
Do hope you can get your head around all this, to come to a decision. Good luck and keep us posted.
AM seems to have lost his way a little
sciencebasedmedicine.org/th...
Interesting- he seems to be working hard investigating and challenging - good for him.Thanks for posting.
PMRpro, thank you for this! I have managed to ramble my way through this. But, indeed, very interesting what has been said that AM has recently been saying. Especially about his father and him dying and what he now is saying the causes were. I can fully understand his great concern about having to wait for an ambulance. Perhaps had one turned up much more quickly his father may have been saved, no doubt with more medication or procedures maybe.
Gosh it is so incredibly complicated. But wonderful that you have access to these things and can understand them and let us know about them. We are so lucky that we have you beavering away with all this information.
I recently came out of hospital having a 3 week stay to be OK enough to go home after a big emergency bowel operation. I was beside myself with total lack of sleep and desperate for something to knock me out for a while. Amytriptaline ( up to 50 mgs) plus Zopiclone did nothing. One GP suggested I might be able to take Melatonin, but another GP researched it and said it was not advisable to take with ( I think) Prednisolone. So sadly that was that. My lack of sleep was doing my head in! And not helping my healing and recovery.
I am now just over 3 months from the surgery and sometimes get some sleep but mostly it is very lacking. I take 20 mgs of Amytriptaline each early evening . But I was very impressed with the other GP finding this out for me. She was also praised by my normal GP.
Thank you for sending this article.
We warn about using melatonin with pred - it potentially reduces the effectiveness of the pred so you might need a higher dose.
I didn’t know that, but I obviously wasn’t prescribed it in the end. Unfortunately, whilst in hospital I had a great fight on my hands to be given any pred! Also since the excruciating pain started I had upped my dose from 10 mgs to 20 mgs. They weren't at all happy with that! But since the attack it had in any case caused a massive flare of PMR when I could barely walk. Eventually I managed to get one of the consultants while doing the rounds, to agree to me being on 20 mgs. I was told that the pred would delay the healing, but I knew and accepted that anyway.
I've never had major surgery since being on pred - other than having a pacemaker inserted and that healed fine as far as I can tell. It was pretty agonising at the time as the local anaesthetic had worn off before the transport was available to take me back to the local hospital from the cath lab and the hour plus in an ambo with a guy who thought he was practising for a slalom was not a pleasant experience.
oh dear, that doesn’t sound at all nice. I also have had a hip replacement whilst on Pred and have ended up with one leg a lot longer than the other one. Amazingly the horrid physiotherapist said it wasn’t true and was trying to get me to do things I couldn’t possibly manage . Anyway, in the end the surgeon agreed my leg was now well over an inch longer! So, went to orthotics ( didn’t know of their existence!) to have my shoe built up which is great except mostly I am inside and in slippers!
I hope you reported the physio! Physios here seem a totally different breed! I've had bad UK experiences too
no afraid I didn’t! I think I was upset and emotional and I was just trying to get used to the fact that it has been done and trying to adjust to it. Funnily enough ( well, actually not that funny!) I went for Xrays yesterday as that hip is giving me pain which continues down my thigh to my knee. Will be interesting to see if they can find the cause.
If you are walking squint ...
oh yes definitely! My OH has wanted to complain, but I really can do without more stress to be honest. Have got more than enough to cope with at the moment!
Agree with PMRpro - walking squint as she says will through your whole body out....
Sure my "bad" knee (for a good number of years before op) contributed to the opposite hip being "knackered" according to surgeon - luckily replaced only 6 months after knee - and under NHS [but in private hospital because urgent].
Actually it is quite common - and any phusio worth their salt should know..
verywellhealth.com/leg-leng...
gosh, that’s very interesting! No, nothing was mentioned before surgery or after except when I told the surgeon it was longer. He replied that he used the smallest one he could lay his hands on! Oh, great! I suggested he did it so he could operate on the other hip and it would end up being level. Hmmm, actually really don’t want another one unless desperate!
But your clothes won't fit ...
No quite!...
My legs seem okay -but perhaps a replaced knee one side, and a replaced hip the other balances out...
sorry not funny.😟
If you don't laugh you have to cry - and that's even worse.
well, there you go! Now, you probably are all balanced out right with each side of you having been “ attended to”so to speak! And PMRpro is right too, of course, crying is not a good thing to do.
i did notice and said, after I came round from the op, ( this most recent one, cutting me open to remove an awful lot of stuff) that I had gone blind in my right eye. In my drugged state I did wonder whether I had suddenly got GCA and in fact I did hear someone mention that, no idea who, but nothing was done and fortunately over the next couple of days or so, the sight did right itself, although subsequently, my sight has greatly deteriorated and in fact am going to collect new glasses very soon. Not being able to see properly is a problem. I am reckoning that with the huge shock to my whole system lots has got a bit messed about. I am fortunate that I do still have both my eyes vaguely working.
"I did hear someone mention that, no idea who, but nothing was done and fortunately over the next couple of days or so, the sight did right itself,"
Bad person - it COULD have been an intra-op stroke and personally I'd like to think someone might investigate.
you are amazing! An incredible mine of information! I had never heard of this before. I have recently been to Specsavers for the first time, and was impressed by the level of care etc they took including at extra cost, a photo of the back of my eye. It seems everything is alright but my prescription certainly for my reading has totally changed and where the prescription had been put wrongly in my varifocal glasses. Having previously been to local optician for a number of years, I now have tried Specsavers, so we shall see! Well, hopefully I will be able to actually see alot better!
Bit more than that actually - working up - left knee, right hip, left shoulder ..and of course, right eye [but not replacing that unfortunately]….as you say, good job we can see the humorous side of life.
oh yes, DL, I do remember. you saying you had shoulder surgery. You are very brave. I have got impingement in both shoulders with torn tendons ( possibly related to taking Pred? ) have had for a few years now, but seen two shoulder surgeons, one of who I actually vaguely know, who said the different surgeries would cause a lot of adapting to, as he knew what I had and was going through , and so I have resisted any more surgeries! So, I take my hat off to you, you very brave lady.
Replacements not so much bravery, as wanting pain to go away! ..but add in eye patch and I’m a shoe-in if they ever make a female version of Pirates of the Caribbean 🏴☠️
you are lovely! Well, you both are! We are so lucky to have you both with your help.
I couldn’t agree more.
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