SLE/STATIN: Hi everyone, My cholesterol has been... - LUPUS UK

LUPUS UK

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SLE/STATIN

Squrriel88 profile image

Hi everyone,

My cholesterol has been consistently high for few years now , my previous GP was worried about the side effects and refused to put me on it. Now a locum GP has decided to prescribe statin for me. I have read some studies that statin is ineffective in SLE patients, and could do more damage than good.

Any comment and thought on this is much appreciated. Thank you.

29 Replies

I have SLE and I've been on simvastatin for years. It has been effective and I've had no problems with it. I did start out on atorvastatin but that raised my liver function tests. My surgery does a routine blood test about a month after starting a statin, so it was picked up then.

Squrriel88 profile image
Squrriel88 in reply to marypw

Thank you so much, it is certainly reassuring. My cholesterol level was around 5.6 or 5.7 for the last couples of years . It is unfortunate that both of my GP and rheumatologist left more or less at the same time. They had looked after me over 20 years. I probably leave it till I discuss with the new rheumatologist.Thank you again.

marypw profile image
marypw in reply to Squrriel88

You are welcome and yes I agree, its really important to see doctors you trust.

I hadn’t heard that but maybe with the medications patients are on, they worry about the liver. That would be a good question to ask.

I take statins but have undifferentiated connective tissue disease, not lupus. I am not on immunosuppressants, which may make it safer.

Let us know. Such an important issue.

K

Squrriel88 -

I just read of a similar study out of NYU. If I were you, I wouldn’t do anything before contacting your rheumatologist. It is pretty significant.

You may be eligible for a new type of medication.

Best of luck

K

Squrriel88 profile image
Squrriel88 in reply to KayHimm

Thank you for your reply. My old GP was worried about the possible side effects such as muscle pain and fatigue. I am due to see the rheumatologist next month. I will wait till I discuss with her. Will certainly let you know the outcome. Thanks again.

Hi I have SLE and I did have high cholesterol but when I was put on hydroxychloroquine a side effect was that it lowered my cholesterol 🤷🏻‍♀️

Are you already taking hydroxychloroquine?

Hi, I was on Hydroxychloroquine for 14 years, had to stop due to the changes of my eyes. The only medicine I am on now is Mepacrine, not sure it is as good as the Hydroxychloroquine. Thank you so much for your reply.

My rheumatologist put me on Ezetrol ( Ezetimibe ) for high cholesterol which seems to have worked without side effects. I’ve been on Prednisolone for over 40 years !!

Squrriel88 profile image
Squrriel88 in reply to HappyNan

Thank you. I will discuss it with my rheumatologist when I see her next month. Thanks for the info.

KayHimm profile image
KayHimm in reply to HappyNan

Very interesting you were put on Esetrol and not a statin. And it’s prescribed by your rheumatologist who would be more likely to have seen these studies about statins in lupus patients.

Would you mind asking your doctor about this?

Glad it’s working. I am on Zetia and Lipitor. A bit concerned now.

Xx K

HappyNan profile image
HappyNan in reply to KayHimm

My doctor has very little to do with my treatment and in fact my rheumatologist has just decided that I don’t have Lupus anymore , “just” Secondary Adrenal Insufficiency as a result of being on steroids for so long. Because I was diagnosed so long ago , I’ve steered clear of all the various other medications and stuck with Prednisolone which has suited me although it has of course backfired because of the A.I.My Lupus treatment has always been governed by rheumatologists and I have preferred it that way. Not much more help to you I’m afraid !

xx

Hi.

My experience with statins.

About 10 - 12 years ago my GP recommend that I go on statins, so I did ( simvastatin). Also around this time I must have started early stage RA and was having aches and pains, which also coincided with muscle aches from the statin, so I stopped taking them. The aches and pains stopped, no problem.

However about 8 weeks ago I had a heart attack caused by cholesterol build up and taking nsaids ( naproxen) - this was according to the cardiac people at the hospital I attended ( ended up with having a stent fitted ).

I’m now on statins again but this time it’s rosuvastatin and no aches and pains.

So if you decide to take statins ( it’s probably a good idea ) make sure that you are prescribed a type that doesn’t cause you problems, there is lots of choice, just don’t let your GP fob you off with the cheapest one that make cause problems.

PS - my cholesterol readings shot down after being on statins for a short time.

Chris_0

Squrriel88 profile image
Squrriel88 in reply to Chris_O

Hi , Thank you for your advice.I will bear in mind when I see the rheumatologist next month. I don’t know what medicine he (locum GP)has prescribed, a bit concerned that he doesn’t know about my health history. It was all discussed over the phone. My local chemist hasn’t received the script yet according to them. Very disorganised. Thanks for your reply, much appreciated.

Chris_O profile image
Chris_O in reply to Squrriel88

Hi.

Glad I could help.

Chris_0

Squrriel88 profile image
Squrriel88 in reply to Chris_O

Hi Chris, hope you are recovering well from your heart attack. Best wishes.

KayHimm profile image
KayHimm in reply to Squrriel88

Squirrel -

It sounds like sort of recent research about statins and lupus. All doctors may not even be informed. They cannot possibly know everything that comes out. And the NHS wound publish guidelines and it may still be a question mark.

What one study seemed to show that the way lupus patients process statins makes it actually cause more plaque in the arteries. This has me concerned too. There is no way they know yet if this is all lupus patients and whether it pertains to those with lupus-like disease.

Your question is hugely important.

Note one member was put on a drug that is not a statin. Did her doctor know about these studies and that is why he chose it instead of the more typical first line statin?

I am completely in the dark think but think this is something all of us with high cholesterol should be concerned about. The studies are coming out of John’s Hopkins (Pétri is a leading lupus expert) and NYU. Maybe there are many more.

Thanks again for this alert.

xx K

Squrriel88 profile image
Squrriel88 in reply to KayHimm

Thanks for your info. I agreed that our doctors are not fully up to date with the current research. Very often, from my experiences , it is a case of trial and error. I guess it comes down to the cost to your health and the benefit from taking the drug. Thanks again. Best wishes.

Have they actually checked your thyroid function fully, before you get started on a statin? Hope so and would be worth asking. Cheers

Squrriel88 profile image
Squrriel88 in reply to bookish

They haven’t offered the thyroid function test, it was decided purely on my cholesterol level. Will definitely ask. So grateful for everyone’s advice. Thank you.

bookish profile image
bookish in reply to Squrriel88

No problem. If possible, TSH, FT4, FT3, and antibodies TPO Ab and Tg Ab. Medichecks do at ok cost if you struggle. Best wishes

Squrriel88 profile image
Squrriel88 in reply to bookish

Thanks again for your advice. Best wishes

bookish profile image
bookish in reply to Squrriel88

My pleasure! From the NHS Statins page, just in case you need it:

"If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid."

Squrriel88 profile image
Squrriel88 in reply to bookish

Will definitely check this out. Thank you . I am grateful to everyone who responded to my question. Best wishes. Take care.

Statins are very popular amongst doctors for lowering blood cholesterol but there are common side effects eg muscular pain: simvastatin, atorvastatin and rosuvastatin are the common ones.

Simvastatin is the cheapest and is most often prescribed but it has the greatest muscular pain side effects. I asked for rosuvastatin which is supposed to have fewer side effects and GP prescribed this for me.

They are generally prescribed for life but a little known serious side effect is that you may be more at RISK of developing cataracts in your eyes. Prednisolone also makes one at risk of cataracts.

So one has got to continually weigh up risk/benefits. With blood cholesterol blood tests there are HDL, LDL and VLD cholesterol concentrations. Doctors usually give also your total blood cholesterol figure. [HDL=high density lipoprotein cholesterol].

I’m vegetarian so my fat intake is low, have got cataracts in both eyes so have stopped taking statins.

They have no effect on my SLE, SCLE, DLE and other autoimmune diseases. Statins are never prescribed for lupus. Many lupus patients do not necessarily have high blood cholesterol but some may have cardiovascular involvement.

Thank you. Atorvastatin has been prescribed for my high cholesterol. I am still undecided whether to take it or not. Having read the recent studies, I will wait till I have a full discussion with the Rheumatologist. If Statin caused more harm than good in Lupus patients, I would rather not taking them.Thank you for your info and advice.

Yes.

Get an expert doc to check your blood cholesterol levels properly. Get him/her to sort out the right meds for lowering your cholesterol if you definitely only have it?

My statins were prescribed years before my lupus.

And now I have cataracts so I’m like🧐🤔

Both my nephrologist and rheumatologist never told me to come off statins.

It seems to be a drug one stays on for life but??

So sorry to hear about your cataracts, hope the doctors were able to do something to improve your vision. We put our lives into the doctor’s hands and just hope that they do the best for us. The trouble is face to face appointment isn’t available liked it used to be. Phone consultation isn’t the same.Take care .

Thanks.

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