Statins and Lupus: I'd like to pick your brains if... - LUPUS UK

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Statins and Lupus

CSLO profile image
CSLO
23 Replies

I'd like to pick your brains if I may?

Since menopause and the onset of these connective tissue diseases, my cholesterol level has risen. I get the feeling of tight compression and a heavy ache in my chest with my flares so the docs are going to do some more heart investigations but want to give me some statins.

I am very open minded about treatment, my feeling is that we can but try, but I remembered reading an article about this. I've found it and posted it below.

It's one small study, but has anyone else read anything about this anywhere? Are any of you taking statins with your lupus and if so, have they reduced your cholesterol levels?

I don't drink or smoke and I eat a truly healthy diet. Sadly my exercise is restricted now though I try to walk as much as possible.

The cardiologists are forwarding the statins request to my rheumy so I will discuss with her but would appreciate any feedback anyone can give me.

Many thanks all.

nyulangone.org/news/statins...

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CSLO
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23 Replies
CSLO profile image
CSLO

Thanks for your response Betty.

I probably didn't express myself too well. I fully understand the subject of the cholesterol tests and the way that statins work, I was wondering whether anyone had heard about the subject matter of the article I posted or whether they had had success with taking statins (lowering their cholesterol) with Lupus.

Are you taking statins Betty, have they been successful?

svfarmer profile image
svfarmer

Hi yes I have my cholesterol checked yearly and in May blood test came back very high cholesterol - I eat well, don’t drink or smoke etc etc so I have been on statins since May - in August I was retested and pleased to say my cholesterol is now normal so I’m to stay on them , I’ve had no side effects what so ever from them x

CSLO profile image
CSLO

Great stuff, I'm really pleased for you, thanks svfarmer!

Mine's always been very low and despite knowing that oestrogen can affect cholesterol, the surge immediately after menopause was a bit of a shock and it's gone up again recently. Something needs doing so I'll definitely have to give them a try. My diet is really very good, I can't see that tweaking that could help, so needs must!

I've searched to see if I can find any other published literature on the subject of statins not helping those with Lupus but can't find anything. It's encouraging to read your post.

Many thanks to you.

svfarmer profile image
svfarmer in reply to CSLO

Glad to help xx

Bobbydoodle profile image
Bobbydoodle

I had high cholesterol before starting on Hydroxychloroquine for my lupus and since then my cholesterol is in the normal range.

Are you taking hydroxychloroquine? I’m sure Ive read other people say the same re reducing cholesterol which is a secondary benefit when taking it and obviously not guaranteed for everyone.

CSLO profile image
CSLO in reply to Bobbydoodle

Hi Bobbydoodle

Thanks for your response. Yes I'm on 400mg Hydroxychloroquine daily and also on MMF and Levothyroxine.

It's great that the hydroxy has helped lower your cholesterol, it's good to hear of an unexpected perk from these meds! Sadly it's clearly not doing the same for me in this instance!

Did you make an other changes to your diet etc?

CSLO profile image
CSLO

Hi Betty

Yes it's a very small study, I'm going to do some searching again today to see if I can find anything else.

I'm not a veggie but eat really well and feel sure that this is not a dietary issue. I'll do what has to be done though and will give the statins a go. I feel as if I'm going to be rattling soon with all of these meds!

Just a thought, if your cholesterol has come down, do they not reduce the statin with a view to coming off of it?

HazelW profile image
HazelW

Yes, I have Lupus & take statins, and they do control my cholesterol . It was VERY high before I was prescribed statins but is now at an acceptable level.

CSLO profile image
CSLO in reply to HazelW

Hi HazelW,

Thanks for your reply.

I'm really pleased they've helped you. It's encouraging that those responding have had a positive response.

I use flax and chia seeds to help reduce cholesterol which seems to be working x

in reply to

Eaten raw? Where can I get these please?

in reply to

Aldis is cheapest they are amongst the cereals I add them to cereals or yogurts x

CSLO profile image
CSLO in reply to

Hi Pisces16.

I use them too. Linwoods do a really 'healthy' and tasty mix which is a mix of milled flaxseed, pumpkin and chia seeds and goji berries. We keep a separate tub of this mix next to the cereals, and also tubs of chia and mixed whole nuts that we pile onto cereal, porridge and into yoghurt and berries. Tasty and no doubt good for me as it's filled with soluble fibre but sadly it doesn't seem to be helping this rising cholesterol! Still, maybe if I didn't eat healthily it would all be much worse!!

Thanks for replying.

I also use mixed seeds and have gone veggie it has also helped IBS so overall feel better, at least we know it won't have side effects like drugs x

CSLO profile image
CSLO

Mmm it's a tricky one Betty. That's certainly a question that I'd wish to discuss; why is it necessary to stay on them forever if they work quickly? I wonder whether this is really the case universally?

More research!!

Pumpkin2009 profile image
Pumpkin2009

Thank you for the article. It definitely made me think. I have had high cholesterol and high triglycerides for a long while. My new GP went over all my risk factors that I already have and felt it was time to take statins. My cardiologist and rheumatologist agreed. I just started. I know it is not a diet issues for me. Not really thrilled about adding another pill, but, oh, well. I do think it is lupus that may cause our bodies to not process this well. I have been on Plaquenil forever so in my case it was not helpful for cholesterol.

Healing hugs.

CSLO profile image
CSLO in reply to Pumpkin2009

Hi Pumpkin,

I think it's clear that diet and exercise are not the only factors involved here, some of us will need extra meds to help us along.

I'm going to be having various cardiac tests done so hopefully any statin decision will take the results into consideration.

Good luck with the statins, here's hoping your readings come down really quickly.

Pumpkin2009 profile image
Pumpkin2009

CSLO, I agree with what you say. Good luck with your tests. Let us know what you find out.

Healing hugs.

Tkt3699 profile image
Tkt3699

I'm on atorvastatin, used to be 20mg but with this last blood workup my dose changed to 40mg. I NEED it & trust the doctors (a BUNCH OF DOC'S)

marypw profile image
marypw

I have lupus and take simvastatin, and my cholesterol levels are now fine. I did start off on atorvastatin but that raised my liver function tests pretty quickly so switched to simvastatin. If you find one doesn't agree with you, there are quite a few others to try.

CSLO profile image
CSLO

Thank you both, I'm glad you've both found ones that agree with you. That's obviously the next step, considering the different types!

Paprika60 profile image
Paprika60

Hi, I had a stroke and was put on statin immediately with a strong statement by the doctors saying I should be on it for the rest of my life! Well, to cut a long story very short, I lowered it over the months and a year later came off it completely. My cholesterol level is relatively good. My doctor checks my blood every month and hasn't said anything. I am on hydroxy. 300 mg daily and currently getting monthly Belimumab. I too experience tight chest occasionally but I actually think it may be due to a build up of anxiety that life brings. I strongly believe we must do everything with diet and healthy living (including slow breathing) on top of essential medicine. If you are very worried, I think it is ok to try statin as a solution for the time being and then slowly find a more long term solution that will help you discontinue. All best wishes!

CSLO profile image
CSLO

Thank you both for your responses. I shall have 'the conversation' with the docs re life time use or gradual reduction. Firstly we have to see what I'm dealing with and then decisions will be made.

Thanks all for your advice.

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