Statins and APS

[Sevenstar]

Hi again guys , sorry I have another question! I have primary APS , touch wood as yet no clots etc and I had read statins are good for people with APS . My cholesterol is about 6 but typically I have some 'good ' cholesterol and a healthy diet ! I stopped taking statins , (tried 3 types) because they all gave me more muscle and leg pain than I already have .

My question is this , have any of you found one that doesn't cause this and also do many of you get leg pain with your APS?

Sorry about all the questions, still learning!

[KellyInTexas Administrator]

Hello sevenstar1,

Statins are recommended, yes.

The concern with the muscle pain is that it can actually be toxic to your muscles, including the heart, so you want to find one that suits you.

I’m not familiar with the manufactures in the UK, so I can’t help you there.

I do know that ( in Normal times) you could have your blood drawn to check for your response to a statin/ toxicity.

Do you know if you have the manufacturer Livalo in the UK?

It takes a different pathway in the liver, and tends to have no interaction with warfarin.

[Sevenstar in reply to KellyInTexas]

Thank you so much , I didn't know any of that, yes I will research that particular one to see if it has another name here in uk ! Appreciate 🥰

[KellyInTexas Administrator in reply to Sevenstar]

I’m very lucky I can take statins with no issues. I take pravastatin.

[jetjetjet in reply to KellyInTexas]

I also take that Kel. As you know i just went thru that MESS with my left leg BUT i have been on Prav. for 14 years or so . I wonder if after all that time if i could of developed an issue and if so would it be just one area of body ?? Thyroid has been checked along the way and as no issues there . { Thanks Ray } .going to continue in this line of info Thanks All.

[Sevenstar in reply to jetjetjet]

Thanks jetjet appreciate

[KellyInTexas Administrator in reply to jetjetjet]

My understanding, Jet, is if you are going to have an issue you have it pretty quickly.

Usually my doctor said he wants a blood draw in about a month, then again in three months.

( if no leg cramps, it’s usually a good indication you are not having a toxicity to it.)

That was the brief 15 second education I got from my Hematologist- and now you know as much as I do!)

It’s something you need to ask you internist about, or hematologist. ( internal medicine would be an excellent starting place.)

I think personally, just my personal opinion, is that the endothelial lining of you leg vessels are getting inflamed ( auto immune attacks on the phospholipids ) and setting you up for Inflammation/ swelling and clotting.

[Ray46]

Statins have theoretical benefits for us, see for example: ncbi.nlm.nih.gov/pubmed/221...

However, drug intolerances / side-effects are also common for us, statins included. I've tried more than one, at various doses: muscle and/or joint pain, severe enough to prevent sleep without painkillers, every time.

Worth checking thyroid levels first - hypothyroid is a big risk factor for statin induced myopathy, and hypothyroid also goes with the APS territory. At some point when I am confident my thyroid levels are finally right (they weren't before), and I can get to see doctors again, I may try statins once more.

[Sevenstar in reply to Ray46]

Thank you so much Ray46, another thing to think about , it's a minefield isn't it! Seems now I'm taking a pill for a pill ! Appreciate your help so much !

[KellyInTexas Administrator in reply to Ray46]

Good point, Ray. I’d forgotten about that! That’s right.

[Molliesmom in reply to Ray46]

my husband had open heart surgery he is on atorvistatin..same issue horrible muscle pain..Dr had him switch to might time and has made a huge differance

[MaryF Administrator]

HI, quite a lot of our members on here do take Statins, strictly under supervision of their GP and or Consultant, however they don't suit everybody, I hope you get to the bottom of it. Is your GP helping you? I have no personal experience of these, and not likely to try them due to my extreme drug allergies at times. MaryF

[Sevenstar in reply to MaryF]

Thanks MaryF , to be honest I was them before the APS was diagnosed (March2020) but stopped because of the side effects! So no I do really need to chat it through ! I had just read the data on statins and APS which sounded positive hence why I was keen to ask you guys on here with experience.

Thank you appreciate 🙏

[teresahunter in reply to MaryF]

I take pravastatin with no ill effects I live in the uk

[HollyHeski Administrator]

Hi, I was put on statins (pravastatin) and aspirin after my first stroke, it was explained to me as a good combination therapy, this was many years before I was diagnosed. My cholesterol was around 4.2 - 4.6, it is still in this range.

Once diagnosed with APS, was told to continue the statins. But various doctors have tried me on other brands, never been sure why? Probably cheaper! But tummy problems, pains in legs etc has always made me insist on the pravastatin. Now I won't even think of changing.

[Sevenstar in reply to HollyHeski]

Thank you hollyheski, I will take a look at that one , it's great to have other people with the same issues, I feel some comfort !

[rach1081985]

I take artovastatin no problems used take simvaststin xx good luck muscle ache is common side effects of statins... Ive been fairly lucky as normally have reactions and side effects to most drugs

[Sevenstar in reply to rach1081985]

Thanks so much Rach , all this is encouraging!

[diane1428]

Been diagnosed with aps and SLE so really REALLY don’t want more pain but been on atorstatins for a while with very little problem. Certainly worth a try. Good luck.

[Ageingfemale]

Hiya. I take Rosuvastatin. I used to be on this one, combined with Ezetimibe. Then was changed to a different one, mainly because of the cost. After my first tia the consultant insisted I went back to the combination and the gp was fine about it. I’ve never had any problems but I know plenty of people do.

[judes]

I gave up on statins any I tried made me feel awful.

Fortunately my cholesterol levels are actually ok around 3.9 despite the fact I love butter!

J

[Sevenstar in reply to judes]

Lucky you I wish mine was that low ! Yes I admit they make me feel rubbish too !

[DeanJ]

Hi,

I take Atorvastatin with my Warfarin and have not had any problems thankfully.

[Sevenstar in reply to DeanJ]

Thanks DeanJ this is all good news , although I accept not everyone gets along with Statins , me included

[Cinn987]

Hi, I tried 3 different statins and, like you, it gave me increased muscle pain. Im about 7 i think.. just watching my diet as im not sure theres anything else i can do. Good post

[Sevenstar in reply to Cinn987]

Thanks Cinn987 ... it's a tricky one alright, choices ! Stay well !