High cholesterol , advice please: I have familial... - PMRGCAuk

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High cholesterol , advice please

Jancorb profile image
13 Replies

I have familial hypercholesterolemia, for years I've been able to control my reading at about 5.2, it's now gone to 7.3, too high. My doctor tells me my old statin can't be increased, so needs to change it to double my prescription to 20 mg.

Can you recommend a statin to be taken with prednisolone?

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Jancorb profile image
Jancorb
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PMRpro profile image
PMRproAmbassador

Don't think there is one that is better than another really - except one or two do have PMR listed as an adverse effect. Simvastatin is said to be bad in that respect and I had terrible problems with atorvastatin which I was given after a few years on pred though whether that was me or the pred is a mystery. However - the Johns Hopkins Lupus site mentions some of the second generation statins being implicated in causing autoimmune disorders and they include simvastatin and atorvastatin.

hopkinslupus.org/lupus-trea...

There is also some evidence that higher dose statins taken together with steroids may increase the risk of renal damage:

cardiovascularbusiness.com/...

but I can't find any more information about it. According to that the dose is crucial - whatever your doctor can use with the lowest dose it seems.

misha453 profile image
misha453

I take Crestor 5 mg daily to decrease my cholesterol. LDL is 69 and Cholesterol /HDL is 2.4. It wasn't high before my treatment for PMR/GCA with Prednisone / Actemra. I have had no side effects from it. I tried Lipitor for 6 weeks and that caused agonizing muscle pain so I stopped it.

Blearyeyed profile image
Blearyeyed

Have you been given any other medication or advice in terms of diet and supplements for your FHC ?

I know that the advice for dealing with it can be slightly different to the advice given for standard Cholesterol Control advice.

Do you have any other Health issues and Medications that you take, apart from PMR and FHC , that would also impact on your individual needs ?

nickm001 profile image
nickm001

Latest research shows that there is very weak, if any connection between cholesterol and heart attacks. Routine check of HDL and LDL is meaningless. Body makes as much cholesterol as it needs and cholesterol is necessary for EVERY cell in the body to survive. Statins block production of cholesterol, but do they really make any difference as far as reducing risk for heart attack? Probably not...

If you are concern about cholesterol level, request complete particle analysis including LDL-a and LDL-b , last one being somewhat better predictor for heart attack. Best correlation/predictor for heart attack would be Cardiac CT scan of calcium deposits within heart.

PMRpro profile image
PMRproAmbassador in reply to nickm001

Familial hypercholesterolaemia is a different kettle of fish unfortunately. Statins do make a massive difference there.

Jancorb profile image
Jancorb in reply to PMRpro

Thank you.

Turbert profile image
Turbert

Hi Jancorb

My GP wanted me to start Statins and I did not want to have them. We agreed that I should diet first and if that did not work I would take the statins. I read that oats was better than anything else for reducing cholesterol. I have four large tablespoons a day, sometimes as porridge and sometimes just as it is with yogurt. When I had my next test the GP said that even statins would not have reduced my cholesterol that much.

Perhaps worth a try!

Jancorb profile image
Jancorb in reply to Turbert

Hello, sadly I have a genetic problem where the body over produced cholesterol. No amount of special diets can alter that. But with statins we now of hope of living a fairly normal life. Sadly to late for my brother's, mother and father.

195094 profile image
195094

I take a big dose of fish oil as I could not tolerate the statins. Has made a huge difference in my overall cholesterol.

Ilovetotravel profile image
Ilovetotravel

Hi.just wondering if having familial hypercholesterolaemia puts us at risk with covid?

I take astorvastatin and also sulfasalazine for crohns and rheumatoid arthritis.also have osteo penia -1.9.

in reply to Ilovetotravel

This post is a few months old. You may get more responses with a new post if PMR GCA related.

I haven't read anything re hypercholesterolaemia and covid 19 as yet. I can't remember if sulfasalazine is on the list of meds that may increase risk or risk score. The pinned post re addenbrooks may help.

PMRpro profile image
PMRproAmbassador in reply to Ilovetotravel

This seems to be a disputed factor in Covid-19. A fairly early Chinese piece of work suggested patients with very low cholesterol levels might not do as well if they did contract Corona-19. On the other hand there are demands for a Phase III study using statins as an anti-inflammatory medication in Covid-19 patients.

This is the most recent I can find

academic.oup.com/ehjcvp/adv...

Your medications aren't a factor I dont think if that is all you take - but not sure about the Crohns and RA themselves.

AlexandriaT profile image
AlexandriaT

Hi did you manage to find a more appropriate statin to take with your other medication.

Have you had familial hypercholesterolemia all your life or has it been something that came on later, reason for asking is they are saying I could possibly have it.

I do have high cholesterol of 8 but it always used to be below 5 until I stopped smoking, I did take atorvastatin till 12 weeks ago and it was always about 4.3 then liver function was off so doc said to stop taking them.

Thank you for reading.

Regards Alexandria

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