Currently on long term Pred 5mg for PMR (Started with GCA in 2015) In November I had lower leg dopplers after complaining of intermittent claudication. Results were no major vessel involvement but both calves affected. My LDL was 2.6. It was recommended I start statins and Clopidigrel (instead of my Aspirin) which meant I also had to swap from Omeprazole to Lansoprazole. The surgery pharmacist rang and prescribed 80mg of Atorvastatin!!! I was so stunned I agreed to take it but after 2 weeks I decided to cut them in half!! Felt like I could be having a flare...very achey shoulders and upper arms. Also increased reflux problems and other digestive issues!! Oh and extremely tired! All this not helped over New Year by the horrible virus going around!! I have finally managed to get a GP appt next week but I wondered about the advice from here. Do I ask to officially reduce my dose or try a different one? I never really wanted to start them but if I am a high cardiovascular risk I suppose I should persevere. Sorry for the long post and TIA.
Another Statin question!: Currently on long term... - PMRGCAuk
Another Statin question!
That seems a large starting dose…. And Avorstatin is usually first choice, think it the cheapest… but many do have to try that, and Simvastatin which sometimes isn’t particularly good either and then Rosuvastatin- which suits many …
But you probably get a variety of responses - you have to find one that suits you…
Apparently it's the recommended dose for high risk. I'm not sure I'm that high risk and the more I think about it the more I think I should have asked to start low and build it up!
That sounds more sensible .. bit OTT is not high risk..
I started on Atorvastatin but it affected my liver so came off it. I didn't go back on it because of other health reasons but I did have a phone call from the pharmacist of the practise and he tried to get me to go back on them. I told him I wasn't going to take Atorvastatin again and was taking Plant Sterols. He told me they wouldn't stop heart attacks or strokes and what would I like to do? He said there were other statins and there is an alternative to statins that work in another way. I didn't actually decide to take anything, I should but I am trying to get my sodium right, so reducing anything I don't have to take and having blood tests for sodium levels. I hope that helps, it seemed that the pharmacist was suggesting anything to get me to take something.
The pharmacist did ask me if I was happy to take them and followed up with a phone call 2 weeks later. I had mostly GI side effects then so she recommended I try and persevere through them as they may get easier!! I'm to have bloods done in March but I asked for them earlier as I have had very raised liver enzymes with a couple of other drugs, but she couldn't do that for me. Hence my doctors appointment next week.....3 weeks after I asked for it!!! I'm happy to take something but I need reassurance about the dose and the blood results I suppose.
I had asked for my blood test a bit earlier but couldn't have it. I sensed something wasn't right. I hope whatever you decide works. I was more confused when I had to go to A&E in the summer and when asked the drugs I was on I almost apologised that I wasn't taking statins at that moment and the Dr said " You don't want to take them. I asked if she had just said what I thought and she had. Then she asked what I had for breakfast. When I said branflakes she told me I should have eggs and bacon and that everyone had it wrong about statins. I was given a website to look up all about eating fat and the real problem I went there with wasn't taken as seriously as I thought. I left there very very confused.
Atorvastatin was the first to cause me problems and that was on a half dose - and has a track record as one of the worst in PMR, along with Simvastatin.
I also don't get why you are thrown in at the deep end with dose - why not titrate up?
goodrx.com/classes/statins/...
It is rhabdomyolysis that is the major risk - but you can have increased muscle pain with statins without developing that or being anywhere near it. I think doctors have fallen into the belief that patients expect to have problems so dismiss PMR patients who complain of worse pain. My view is that PMR on its own is bad enough - I have no desire to take ANYTHING that makes it any worse!! For me Ezetimibe and bempedoic acid does the cholesterol job and I can't identify a problem.
I think I was so stunned about being thrown in the deep end, as you say, that I agreed to take them!! But....as I said, I've been cutting them in half!! Rightly or wrongly. I've a mind to stop them until I see the doctor next week, to see if I feel better. It will be a new doctor for me as my old practice (which was excellent) had to close. So I've no idea whether this new doctor will be well informed about PMR/GCA.
I can never see why taking a holiday to see if it is them making you feel utterly rubboish is a problem. Hopefully you now have an enlightened practice and not a lot of insecure precious flowers who can't discuss problems with the patient and see their point!!
You could consider avorstatin at 20mg and ezeterol at 10mg as an alternative to reduce high level statin side effects if your doctor will prescribe them.
I had a health check at my Doctors and then was sent via text a message to say that my risk level was 13.3% (apparently should be under 10%) so I needed to be on statins to avoid a heart attack. That was a bit of a joke as I had just spent £3,000 privately at The Nuffield Newcastle with a Cardiologist to assess my shortness of breath. ECG, Echo and two CT scans!! His results said I was not at risk of a heart attack!! No medical reason for the shortness of breath could be found (possibly steroid induced or deconditioning). His letter to me was also copied in to the surgery. I have been told by people in the know that medical practices receive income for every person put on statins so are extremely keen for ALL of us in a certain age group to be on statins. It is quite disgraceful. Obviously I have not started them.
My QRISK2 score is 13%, up from 9% last time. For that reason, plus the intermittent claudication, I am happy to try statins....just not at 80mg. I have some ex colleagues (cardiac surgeons) who recommend everyone over 55 should be on a statin....so who knows?
In your circumstances with intermittent claudication you are probably correct to take statins. For me, as I know for certain I am not at risk of a heart attack it just seemed crazy to encourage me to take them, especially as I am down to 1mg of pred. and statins can cause PMR in some people. For me I won’t take the chance of a recurrence.
It seems a high starting dose, I started on 40mg and then it was increased to 60 mg. I have had a discussion with pharmacist about this medication and she indicated that it would not be increased to a higher dose and that I needed to reduce my cholesterol through exercise and diet. I have been on the PMR journey for 21 months and I have been lucky I started on 15mg and it had to be increased to 20mg, I am now down to 3mg a day, slowly lowering the dosage by 1mg every 8 weeks. Feeling positive.
Hi, I'm really glad your PMR seems to be under control...you actually might be one of the 'lucky' 2 year ones. I hope you continue 😊 I started with GCA in 2015, PMR came along later and it appears I can't reduce lower than 5mg of pred so you could say I'm one of the unlucky ones....but I am stable, I think...just need to work out if these aches and pains are the statins or not. I feel they are, I don't think I'm having a flare. So...onwards we go. I have actually stopped them for now and already the GI issues are improving. 😊
Good luck I really hope things go well for you
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