Cholesterol and Statins: Just had results of... - PMRGCAuk

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Cholesterol and Statins

jaycee444 profile image
jaycee444

Just had results of Cholesterol test which is 6.2 (up from 4.8 three years ago and pre PMR). Started a low carb diet as soon as prescribed Prednisolone and it has certainly stopped me from gaining. Weight but has meant that I have had to add more fat to my diet for energy. I am guessing that this has caused the rise. My Dr has said that I am eligible for Statins so am wondering if I should be taking them now. Any advice - and will they mix with he Prednisolone?

24 Replies

Hi Jaycee444. You will get very mixed opinions on this. I've taken them for many years with no problem, but it took three or four goes to find the one that didn't cause a problem. Rosuvastatin works fine for me, the others gave me terrible joint pain.

PMRpro profile image
PMRproAmbassador

I don't need much extra fat for energy, my diet definitely isn't high fat. I did try statins once - for less than 10 days as I was almost in a wheelchair by then! One adverse effect can be PMR and even without PMR they can cause unpleasant muscle effects (don't care what they claim).

My cholesterol is high (although my HDL level is very high which makes the total look bad), but even my cardiologist agrees with my view of more recent analysis of trial results which shows that statins do not make any protective difference for females who have not previously had a cardiovascular event although they do help prevent a repeat once you have had one. The same doesn't apply to men - they are protective for them both before and after a CV event.

Suffererc profile image
Suffererc in reply to PMRpro

My OH took statins for a year when aching arms appeared and he stopped. His cholesterol was 5. Which now is not high. Since coming off his cholesterol has gone down to 4.6. Truth is he didn’t need it in the first place just GPs wanted everyone on it

PMRpro profile image
PMRproAmbassador in reply to Suffererc

Marketing ... Same with Fosamax/alendronic acid

My father had statins and he became a zombie with joint pains. In the end his doctor said they would give him a try without and he became the live and soul of the party again. We did occassionally threaten to ask to have him put back on them again!!!

A Professor in Cardio won't prescribe a statin as the 'proles' can cause joint pain.

My Cousin had a stroke and the clinic told her porridge every morning and a whole orange (not the juice etc). The Cholesterol level was down within 6 months and 10 years later sill down. 11 years later, same breakfast, same level.

Constance13 profile image
Constance13 in reply to jinasc

I wonder if porridge with prunes, dates or figs - topped with cold muesli would do the same thing (one of my favourite breakfasts) but no orange (which upsets my stomach). I really don't want to go back on statins. Cholesterol level 9!

Cheers Jinasc!🥃 Hope life is treating you well.

Constance

jinasc profile image
jinasc in reply to Constance13

Worth a try...............mind it has to be proper porridge made with oats etc - no added sugar or salt. Can't do you any harm either.

I don't think adding Muesli would help, I would try prunes tinned not dried (liquid).

Now I am laughing thinking about prunes and the bog xxxx

Constance13 profile image
Constance13 in reply to jinasc

No added sugar (enough fruit in it) - never salt (much to Pro's disgust)!😂

I gave in to statins a year or so again. BP and cholesterol were very high despite exercise and diet control. No joint pains but massive muscle mass loss, which I assume is down to statins. Cholesterol is now down to such a level that I am wondering whether to stop the statins.

I was lucky to have rational discussions with my GP about the statins, risks, etc. I have been on pred a long time and have felt more of the side effects recently although reducing quite well, so presume there is cumulative effect too. You takes your choices.........

PMRpro profile image
PMRproAmbassador in reply to herdysheep

Of course you do have to bear in mind that it has gone because of the drug - like BP goes down when on medication but will rise again if you take the leash off.

I'm not supporting statins - but I do need to ask if your CPK/CK (creatine kinase) level was tested when you say you had massive muscle loss.

herdysheep profile image
herdysheep in reply to PMRpro

I'm pretty sure those were checked but I will recheck. Various things looked at re weight loss - some results still outstanding. I know cholesterol levels will rise if I stop statins but wonder if muscle may regenerate?

PMRpro profile image
PMRproAmbassador in reply to herdysheep

They could IF it is the statins adding to it.

I'd try to improve things with diet first. Years ago, my husband's was 6.6. Through diet, cutting out thick butter and cheese usage, it came down to 5. Using olive oil etc. I had a friend who became wheelchair bound and actually moved to a ground floor flat. He had loads of tests at Addenbrookes and they couldn't find the cause of his pain. Eventually Bingo.... They told him to stop the steroids and he was back to completely normal, no pain, no wheelchair., back working again. It seemed like a miracle. Of course, some people get on with them, but I am very wary.

PMRpro profile image
PMRproAmbassador in reply to diana1998

Steroids - or statins????

diana1998 profile image
diana1998 in reply to diana1998

Whoops.. Sorry, meant statins...

Did you mean statins not steroids?

Hi jaycee444. I have a long history with statins (prior to prednisolone) and was initially prescribed them when my cholesterol was measured at 6.5. I asked to try and reduce it myself.... which I did - to 4.2.......but I was extremely disciplined, exercising daily and eating healthily....which meant eating healthy fats but not saturated fats. However, this strict regime was unsustainable over a long period as it definitely effected the quality of my life so I finally took the statins. After 4yrs on them, I had an assessment of my risk of experiencing a heart attack or stroke and it was very low, so my GP allowed me to come off them again. For a while I was ok but eventually it became increasingly more difficult for me to control my cholesterol level and finally at 12.5 and clearly dangerously high, I've been back on statins ever since. I'm not aware of having experienced any issues with Atorvastatin but of course they may have been the cause of my PMR! I currently eat a low carb (not NO carb) diet but cut out as much saturated fat as possible. I definitely include lots of healthy fats such as salmon, tuna, nuts, seeds, olive oil. These can actually increase your good HDL cholesterol which helps combat the bad LDL cholesterol and also provide a complimentary energy sauce to the proteins.

This is just my experience and you will have to decide what's best for you. If your cholesterol levels remain stable over time then it may be possible to maintain the status quo with diet alone, but if it clearly is progressively increasing then there may be an argument for considering the use of statins. Only you will know.

Thank you to everyone for you valuable advice. I have decided to go down the route of dietary management rather than add another pill to the mix . I was surprised actually that my cholesterol had risen much as I consider my diet to be healthy........although I am eating quite bit more Greek yoghurt each morning as breakfast ( with my Pred) and I simply do not like the 0% fat version.... At lunch I have a homemade vegetable soup and maybe some cottage cheese ( again the full fat version). My main meal consists of fish or chicken with loads of roasted Mediterranean vegetables and a large helping of greens .... and that’s it! I will sometimes have a large salad instead of the veg but I dont stray far from this mix. I do have 250ml kefir each day which I suppose adds to the dairy intake but to my mind this is actually a better diet than I was on prior to Prednisolone or am I being naive? I dont eat any refined sugars and starches . It has been mentioned that Prednisolone itself can cause a rise in cholesterol so am wondering if this has a bearing

PMRpro profile image
PMRproAmbassador in reply to jaycee444

It will almost certainly be due to the pred-effect.

I have very high cholesterol, at one point it was 8. I eventually agreed to take statins. I never felt really well while taking them and the 5mg dose did little to change the level. Then I changed to 10mg and within a few weeks I was diagnosed with PMR. No one will say it actually caused the PMR. My GP said it is known to cause muscle problems but there’s no proof of it causing PMR. Last year, I heard of the exact same thing happening to another woman I know.A doctor on radio recently said she would never prescribe statins for women who haven’t had a cardiac event. It messes up hormones too.

I’ll never take them again.

You have to do what’s right for you. Wishing you well.

PMRpro profile image
PMRproAmbassador in reply to GerriMc

At least one data sheet listed PMR as a possible adverse effect ...

And this

ncbi.nlm.nih.gov/pmc/articl...

does appear to admit statins may worsen PMR - and that was what happened to me.

I don’t think that diet changes will make much of a difference, however I see no upside to a high fat diet. The glucocorticoids are to blame here. You have a few choices. Statins do work, however, as a side effect, they can give you shingles or worsen them if you already have them. Then there are the PSK9 inhibitors. Then there are all the other lipid lowering drugs that act in the gut. Some of those have warnings about use with Pred.

I'm now trialling ezetimibe. Worth a thought? I had Cholesterol around 4.5 then up to 6 for I don't know without looking this up and I am too tired at present but maybe 20 years?..then just before PMR with CRP and ESR higher up to 8.5 despite trying a good low carb, low fat diet..high protein and vege (which I do realise is carb but very low sugar and salt even)..nothing processed for decades at all. Didn't budge much at all. I didn't worry at all as my heart was great according to a cardiologist (I had it checked as my Mum had a heart attack and was on statins before that I think, but definitely afterwards. My Dad had lost a huge amount of muscle with statins and suffered pain with them (chest pain that they suspected was heart damage..but probably wasn't..I give up here. )Anyway my HDL (like my Mum's was always super high even with high cholesterol giving me very good ratios so no docs were concerned. What happened was I had apparently some narrowing in my MCA's both but the left is now completely blocked, then moyamoya like vessels and disappearance of my blood vessels in my left lower brain..some are made up from the side artery branching out and making some new vessels but not enough I feel. They are now saying it is all caused by my high cholesterol and plaque and all my fault apparently as I hadn't taken statins or had gained weight..especially with the pred. I do have fat around my stomach and I am overweight ..now 65kg, started around 56kg before pred...reached 68kg at one stage.. but it's more from not moving as so tired and the past pain as well I think. I did keep active up till I couldn't roll over in bed anymore. The cardiologist has just checked me and said my heart and arteries are fine.. but an ultrasound shows my carotids in my neck , especially the left one is 2/3 blocked.(right about one third) I think of it like a hose where you get a narrowing the water slows and deposits the plaque..it fits anyway. I suspect I may have had some narrowing and then the plaque was deposited where the narrowing was but the top neurosurgeon has refused to operate stating this is not the case, it is solely plaque from cholesterol, and I am at too high a risk for an op. (risk /reward is poor).. Unfortunately, there is a simple urine test over 91% in the US at Boston hospital but it is still in research.. so no luck there to tell if I did have moyamoya or not..as that is a less risky op which I would go with..but can't get that test!!!...

anyway just saying maybe don't just consider your heart..maybe consider your cerebral blood vessels as well. I tried statins as soon as I found out (2018).I tried Lipitor and then Crestor at 20mg and 10mg... but I did feel like I was getting Alzheimer's and fatigued on the Crestor ..but who knows what caused that. My cholesterol only dropped from 8.5 to about 4.9, even with a very strict diet as I was scared...The cardiologist put me on ezetimibe as well as the Crestor 10mg (though I took up to 30mg on most days..and this reduced my cholesterol to 3.9 but I could not function I could not recall what I was saying, thinking or doing for more than a few seconds. So now I am on only ezetimibe(my own test) ..and forgot to go to the specialist to discuss all of this morning!..sigh (my hubbie, my lift as I can no longer drive was sick... , so we both forgot.. sigh, anyway maybe don't just ignore a cholesterol above 6 with great HDL like I did..maybe think about ezetimibe or something else to help??..only I can't find out that much about it. I also am back to ground flaxseeds on my oatmeal (I'd forgotten that one with my memory loss..it does make it difficult to take care of oneself!_..as well as some occasional slippery elm bark to try to help wash away cholesterol..and yes that was what my appointment was about I forget this morning..as I have no idea what I am doing. I can now pay for my own cholesterol tests.. this year I found out it is now allowed..so will retest in a couple of weeks and see where I am at just on ezetimibe, freshly ground flaxseeds on porridge for the omega 3, and slippery elm bark for some fibre. I do agree with everything everyone has said ..though just another thing to consider. The inflammation does cause a narrowing of blood vessels in the brain so it may happen to any of us with higher cholesterol more than to others without PMR or GCA or the inflammation which may be in our brain blood vessels as well..it's not just the heart and arteries that should be a concern..though PMRPro is correct about those studies for women, but they didn't consider the cerebral arteries... Please don't take what I am trying as advice and follow it..just something to discuss with your docs considering GCA is relevant here as well. Just wish I had thought of this instead of just considering the cardiac side.

angiogram lest side showing blockage at start of MCA with moyamoya like vessels. plaque?

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