I have had PMR since May 2020, initially on 15mg pred and tapered down to 4mg by April 2022. Then got Covid and everything went a bit scatty. Returned to 10mg and have been tapering, currently on 7mg moving towards 6.5mg.
In the meantime my blood pressure has risen and recent blood tests showed that my overall cholesterol is high - total 7 - although my 'good cholesterol HDL' is very good apparently. The doctor eants me to take statins, but I am wary as I reacted very badly to two kinds of blood pressure medication.
I have never eaten much in the way of high cholesterol foods, cook from scratch and a lot of pulses, nuts and vegetables, olive oil (generally a low fat diet though) but in the last couple of years I have cut out sausages, bacon, any processed meat, very little cheese, butter etc. Generally low salt
In the last few months I have cut bread out (therefore no butter or spread) and reduced pasta, rice etc to very occasional. Since a conversation with the rheumatologist (Max Yates) a couple of weeks ago I havce been having daily porridge made with water and oat milk, a drop of agave syrup and ground flax seed. I also have hulled hemp. I have to confess to the odd mince pie and Korean takeaway but no packs f crisps, biscuits, chocolates or anything like that. Pork pies a thing of the past - any pies in fact (except that mince pie).
My question is - shall I try the statins or try reducing the cholesterol level by dietary means - daily porridge as described and upping oats and nuts generally? Or is that not sufficient? I don't feel that I can cope with more muscle stiffness but although nothing has ever been formally diagnosed, I think our family has a tendency to cardio-vascular conditions and I don't want to antagonise these 'silent killer' conditions. Any thoughts? TIA
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marionofnorwich
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No way of knowing until you try. The main problem is that most of the cholesterol is made in the liver, irrespective of your diet. jinasc's cousin was told to eat porridge and an orange, whole, not juice, for breakfast and it worked.
The first time I tried a statin I was nearly in a wheelchair after a couple of weeks and that was on a half dose! Took a few months to recover. I tried again early this year - my own usual cardiologist wasn't bothered, the spare was. Within in a month I had a massive PMR flare. There were other things going on but I stopped the statin because of the correlation - there'd been worse the previous year!
The Actemra has sent it up a bit further - the rheumy has put me on Exetimibe. Don't know if it works at all, haven't had blood taken yet.
Statins - nearly as many questions on them as there is on Pred, and certainly more opinions - for and against.
I’ve been on them and off them a few times…off at the moment - no doubt will get another lecture next time annual check up done if reading are deemed high…and like you am on blood pressure meds.
But would say - I have no history (personal or family) of any cardiac events, am female over 75 where there is limited (if any proof) they are a benefit, they do cause me muscle cramps etc, so for me - no.
my parents, grandparents and most uncles and aunts had all passed away from heart attacks or strokes. I have always had borderline high cholesterol and now with Actemra it’s through the roof. I’ve tried 3 different statins and I had serious problems with all three. I will never take another statin again. I’m now on a drug called Rapatha. It is not a statin. It has reduced my cholesterol quite a bit but not enough so I’m really trying with diet and exercise. The only problem here in the states is it is expensive and my insurance will only pay half which still leaves me with $300/month.
It seems unfair when we do all the right things, Cholesterol levels won’t budge. My sister, unlike me, is a model of healthy eating / lifestyle. After a couple of years of trying to tackle cholesterol without statins, she’s given in and accepted GP’s strong advice to take the drugs. I’ve been taking them for a couple of years. If there’s a genetic tendency to high cholesterol, all the porridge in the world won’t help. There’s a history of heart disease in our family, so we’re not talking risks.
i found the same. My cholesterol level wears walkways good but after 2 years on steroids it had shot up to nearly 8 . I refused steroids but cholesterol is gradually coming down as I taper.
Maybe will try after Christmas. A bit inclined to give it three months and them test again and see if diet has made a difference and if not try the statins. Still getting a lot of stiffness on shoulders, hips and knees, bearable but not if it gets worse
Unless you have a specific illness that causes high cholesterol or is made worse by it trying for three months to bring down your cholesterol with diet is a good idea to try first.You will need to be very strict with yourself over Christmas as well though.
Do you know what your Vitamin D and Vitamin B 12 levels are?
Sometimes increased cholesterol can be caused by low vitamins or vitamin deficiency.
Do you take a Vitamin D supplement ?
Oats are great but you can also give natural plant sterol products like Benecol a try , that helped my friend as well as the fat controlled diet.
If you can eat them Citrus fruits help , if you can't eat the fruit an added Vitamin C supplement with food can be helpful.
Sharp green apples with their skin or the full apple as a juice , celery , green peppers and pineapple all help the liver to improve at removing toxins and improve bile production and gallbladder function.
Better gallbladder function and bile movement all help improve cholesterol levels , it's why many people with no gallbladder can have higher cholesterol levels than the norm and often require statins.
Bergamot juice , Earl Grey tea and Green Tea are also beneficial as well as drinking the right amount of fluids each day.
If you can have ginger or turmeric in any form with the medications you take currently these can also help( in food, supplements , or in tea) , check the interactions of your medications , especially blood pressure meds, before you use these daily.
Read your labels , many health food products say low fat and contain bags of sugar or sweeteners, and most low sugar products contain hidden fats and sweeteners and keeping away from sweeteners will help improve your insulin balance with diabetes.
Many healthy or vegan snacks, cheeses and meals contain palm oil which is a high cholesterol product that piles on the pounds or a lot of coconut fat which can do the same.
A little coconut can actually be helpful with cholesterol levels but only about a level teaspoon a day not at the amounts in many coconut based foods and snacks.
Nuts and nut butters are a good nutrient source but be careful of the variety you have and the portion size. Keep away from Macadamias. Check that your nut butters don't contain added oil.
Try getting plain unroasted nuts and roast them off yourself , it takes about 5 mins , all you need to do is shove them on a oven tray and do it while the oven heats up for cooking your dinner. You can add a sprinkle of salt , a dash of vanilla or a spice type you like. It's cheaper than shop bought and you can be sure there are no hidden oil additives on them.
A little gentle exercise , even if it's just a stroll about after meals also helps improve cholesterol and blood sugar and muscle stiffness.
It can take up to six months for your cholesterol to return to normal levels but you should see some improvement after three months. If there hasn't been an improvement, or it's got worse , and you have kept up your good diet , it could mean it may be worth thinking about a statin , even if you only take it until the figures are normal again.
I thought I had a healthy diet & lifestyle but high cholesterol was found as part of the raft of blood tests that led to my PMR diagnosis in December 2020. Could be hereditary, there is family history, so I started on Atorvastatin 80mg alongside the prednisolone and haven’t been aware of any side effects (although obviously I’d a whole lot going on with PMR, pred, and what turned out to be PAD so it’s quite difficult to know what’s causing what!). I’m now off pred but still taking the Atorvastatin and feel fine but will review this with GP early in the new year.
I have been taking a statin for a few months now and don't seem to be having any side effects. My brother in law had high cholesterol and tried to have a very very low fat diet which didn't work. He is one of the most discipled people l know and didn't cheat at all.
Because of familial high cholesterol, I was advised to take statins. I tried 3 different ones and each time had muscle cramps within 2 or 3 months. Since then, like PMRpro I have taken Ezetimbe, which has not affected me in that way and it has lowered my cholesterol levels
Thanks everyone. I will give them a try after Christmas. I don't need to be further disabled right now so won't take the risk before. It's only another week or so and probably realistically I am not in immediate danger. Fingers crossed anyway!
Please everyone refer to the CURRENT research about cholesterol. Triglycerides and sugar are the bad substances to lower. The body makes cholesterol because it is essential, especially for the brain. Research is showing that long-term statin use and cutting out the essential fats are contributing to dementia.You can get reliable information from YouTube presentations on cholesterol by Doctors Ken Berry, Peter Osborne, Mark Hyman, Livingood. Their styles are different, but they give solid advice based on up-to-date knowledge. Most medical doctors have no training on nutrition and repeat what they heard twenty years ago.
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