Statins and pred

[Lclmlbls]

is there anything I should be aware of when taking both? I suspect my doctor will be suggesting I take statins this afternoon in our telephone appointment due to blood test results.

[DorsetLady PMRGCAuk volunteer]

Not as such for most people,

Many are or have been on both... now you've asked the question, you'll see related posts...but it sometimes takes a couple of goes to find the right one for you.. some cause more issues than others.

[Lclmlbls in reply to DorsetLady]

Thanks for your reply. My Dad had big problems with statins and found the ones he took gave him muscle aches and badly affected his walking. Also I am mid way tapering to 9mg. Not sure what to do at the end of this taper.. Should I carry on with tapering to 8 or wait?

[DorsetLady PMRGCAuk volunteer in reply to Lclmlbls]

I’d stay at 9mg for a month and see if you have any issues with the statins -if you are prescribed them.

I was on the them long time before GCA -and had to try 3 different ones before I found one that was okay…also on them through GCA/Pred years no issue

I came off them after I’d finished Pred, and when I tried again a couple of years ago found they made me very dizzy (not good when you life on own and need to drive) -so have declined. Cholesterol is a bit high, but not horrendous so GP has put on records am intolerant to them .

[Lclmlbls in reply to DorsetLady]

Thanks, you have confirmed what I was thinking, about not tapering any lower for a while. I really don’t want the statins but my results are quite high - will see what the gp says later.

[PMRpro Ambassador in reply to Lclmlbls]

Don't add statins AND taper - and I wouldn't add the statin until you have been at the current dose a couple of months to be sure IT is enough. Never change 2 things at the same time or you have no idea which is causing any problem that may arise.

[Lclmlbls in reply to PMRpro]

Thanks for the advice. I thought it might complicate things adding statins to the mix.

[PMRpro Ambassador in reply to Lclmlbls]

I would apply it to adding anything - I object to doctors starting a load of medications all at the same time if they don't have to! Give it a week between adding each new dollop

[Flivoless in reply to PMRpro]

Yes just happened to me due to my newly acquired atrial fibrillation. I was give both Bisoprolol and Digoxin but there was something about the Digoxin that I didn't fancy (I think the lurid green box and the name sounds like a chemical weapon) so I started with just the Bisoprolol for a few days, which was fine, before also starting the Digoxin and I was right to do so as it disagreed with me completely.

[PMRpro Ambassador in reply to Flivoless]

Generally horrible stuff digoxin!! Many years ago a very bad GP nearly killed my MIL by putting her on it "for her heart". She was breathless and had a bit of a cough - he diagnosed heart failure with no further ado and digoxin was handed out without any tests or monitoring. She visited us in Germany and was so unwell we took her to a friendly colleague - who was horrified to find her Hb was under 7 - about half what it should be! All that was wrong with her was severe anaemia. That surprised the GP when blood tests came back - "but you don't LOOK anaemic"!

[Bluey-1 in reply to PMRpro]

In my case I was put on anticoagulants /beta blockers immediately TIA/Afib was diagnosed. I was relieved to be on them and actually felt better. The statins followed on a week later. As you say, definitely hold off the tapering. I had been on 6mg pred for 3-4 weeks at this point and will stay on this until end Sept at least. Will get bloods checked. It’s a full time job, not least managing prescriptions with staff / product shortages in pharmacies. Feels like we’re just hanging on in there in the U.K. at the moment.

[PMRpro Ambassador in reply to Bluey-1]

Yes - that is different, But with PMR they dish out about 6 different things, half of which aren't immediately required if at all. Pred is essential. Then add the calcium/vit D a week or so later. And so on, with the bisphosphonate definitely last.

[Bluey-1 in reply to PMRpro]

…so you’ve no idea what drugs are having what effects!

[PMRpro Ambassador in reply to Bluey-1]

Exactly

[Doublef in reply to DorsetLady]

In the early 2000 statins put me in a wheel chair, now on rosovastatin but my doctor still continues to try and up the strength but I am very wary so for me it is the statins not the pred that causes problems.

[PMRpro Ambassador in reply to Doublef]

I ditched the statin before I got to the wheelchair but it was a close thing first time round! The second time coincided with a big PMR flare - might have been coincidence, I'm not risking it again!

[Doublef in reply to PMRpro]

I don't blame you

[PMRpro Ambassador]

No problem I know of with pred but PMR may be another thing, I have tried 2 statins, both made my PMR go beserk both times but not in the same way.

[Lclmlbls in reply to PMRpro]

Thanks for your reply. So what did you do? Did you find a statin that suited you?

[PMRpro Ambassador in reply to Lclmlbls]

No, says on my notes statin intolerant. I'm on Ezetimibe since being on tocilizumab sent the cholesterol up even higher. But I'm not in the UK - if I were to come back, I would lose all the medication that works for me.

[Lclmlbls in reply to PMRpro]

Is your cholesterol under control now with the drugs you’re taking?

[PMRpro Ambassador in reply to Lclmlbls]

What is under control? It is lower than it was

[Lclmlbls in reply to PMRpro]

I meant an acceptable level really.

My GP did the calculation and came up with a 15% chance of heart attack or stroke. An acceptable level not requiring medication is 10% she said. She also said it is my decision, no rush, just think about it.

[PMRpro Ambassador in reply to Lclmlbls]

I can't remember what it is down to - it is a lot less but still high. They work a bit differently here!

[bonio in reply to PMRpro]

Thanks for all the information here. I'm 72 and my last cholesterol test was 4.9 with higher HDML than LDL. The pharacist at my GP surgery has asked me to consider statins, i've declined but they want to run 6 monthly blood tests. I've explained that I don't want to confuse any statin side effects, ie: muscle aches with PMR i'm finding it hard enough to taper without that. I do take 5mg of amlodipine for blood pressure started this before PMR but wonder should I consider statins at 4.9 which is below the 5 normal level.

[PMRpro Ambassador in reply to bonio]

Well I'm pretty sure my cholesterol is higher than that, also partly due to a very high HDML, and I wouldn't agree to statins! It isn't all the total that matters!

[Doublef in reply to bonio]

To me that is ridiculous they just keep dropping the accepted level

[Bluey-1]

I take statins before bed. I had slight headaches for a few days after starting them and the pharmacist suggested switching to taking them later. Things have settled down. I too have held off tapering to work out what is what re any body reactions as I’ve had to add anti coagulants / beta blockers following a TIA. It’s all got suddenly more complicated…

[Lclmlbls in reply to Bluey-1]

many thanks for your reply. As you say things get more complicated the more drugs we have to take. This time last year I took nothing at all!

[Bluey-1]

I know. A friend and I were boasting over a year ago about not being on tablets. We’re not now! She’s on statins. At times I haven’t known what’s hit me. GCA is a difficult one to get your head around. Now I’m on so many drugs following the TIA/Afib as well I give up trying to understand any of it! Good luck

[piglette]

I am reading a book at the moment called ‘Food is better medicine than drugs’. The author is totally against statins unless you have had a heart attack when he is all for them. He maintains statins are what the drug industry call a blockbuster. You can get people on them for life as they do not cure. He is also sceptical at how many heart attacks they actually stop based on research. Quite an interesting book.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

..does he also say that they are less useful for females as well? Something often touted.

[piglette in reply to DorsetLady]

He just mentions the different research groups and what they found, so it is variable. It is quite an old book so new research has been done since too. There are quite a few doctors (and books) who seem to be rather scathing about statins being scattered about like Smarties.

[bonio in reply to piglette]

Have a read of Prof Tim Spector The Diet Myth and Spoon Fed, both books explain his 'take' on medicines and supplements. He does not advocate Statins unless 100% necessary. Both are recently published based on current research.

[piglette in reply to bonio]

I think I have read all of Tim Spector’s food books. I like the way he changes his mind from book to book! He does admit it. The book to read on statins is Dr Malcolm Kendrick’s The Great Cholestoral Con.

[bonio in reply to piglette]

thanks, will do!

[Lclmlbls in reply to piglette]

I’ve just ordered the Malcolm Kendrick’s book!

[piglette in reply to Lclmlbls]

I hope you enjoy it.

[PMRpro Ambassador in reply to piglette]

No evidence they prevent a first episode in women - they do help protect against a second episode in women and first in men.

[Meggsy in reply to piglette]

I remember reading some time ago that Lipitor was the most prescribed drug in the world. There is an Australian cardiologist who will not prescribe statins unless absolutely necessary , and he prefers the water soluble ones that pass through the body rather than the fat soluble ones that get stored in the liver. He also won’t prescribe them if they have a low coronary calcium score.

[piglette in reply to Meggsy]

Lipitor still is. It makes two billion dollars a year for Pfizer even though its patent ended eight years ago.

[Meggsy in reply to piglette]

Unbelievable! On second thought - believable!

[piglette in reply to Meggsy]

😁😁😁

[Bcol]

Like DL, it took me three goes to get the right one, but have been on them for years, only 5mg, with no problems.

[Sillydogsmum]

I tried to take statins several times over the years but they always upset my tum and gave me muscle cramps. However about 18mo ago i took fright at my cholesterol going to 8 and so resolved to give them another go. Cut up 10mg simvasatin into quarters with a bit of nifty work with a pill cutter and increased by 1/4 per month........sounds familiar to this audience?? 🤔😉. Happily I am now on 10mgs and cholesterol is only 5. I do have thumb and big toe cramps since starting the Pred and am due a CK and K level next week. Dad had a severe stroke at only 62, and survived 15yrs afterwards hence my decision.

[PMRpro Ambassador in reply to Sillydogsmum]

I do wonder if part of the problem is chucking everyone in at the deep end!!!

[Sillydogsmum]

🧜‍♀️🏊🚣

[Viveka]

Have you tried all the diet/exercise/supplement approaches that reduce cholesterol?

[Sillydogsmum]

Yup, I just make too much.

[Zebedee44]

Statins are still the first line of attack for high cholesterol but I am sticking it out and waiting to attend the Lipid Clinic after brief attempts to introduce two types of statin made me feel quite unwell. My doctors turn a deaf ear to my request for Ezetimibe but there are other alternatives, I’m told.

Meanwhile I take a whey protein smoothie for breakfast having read on the glorious www that it reduces cholesterol. My bloods haven’t been tested since I started it but I honestly believe it supported me through a quick taper from 7mg to 5mg this year (although I’ve found I’m happier at 6mg). It’s chocolatey and organic and I mix it with Oat milk so I feel it must be doing me good, rather that than more pills.

[Nominem]

I tried statins but my GP told me to stop after some adverse liver function tests. I have been referred to a lipid clinic for possible use of inclisiran but there is along wait to be seen. I am hopefully stopping prednisolone at the end of this month after tapering off it. At this point a fresh reading of cholesterol levels may useful .At the moment I take nothing to reduce cholesterol levels .

[Lclmlbls in reply to Nominem]

Oh dear PMR, cholesterol, diabetes along with everything else, it’s a drugs minefield isn’t it? And everyone reacts differently to all those things. It all seems a bit too much sometimes 😵‍💫

[Nominem]

I agree it's a real balancing act trying to get it all together

[Polygolfer]

Hello, I take both with no restrictions or downsides…

[Molly555]

some interesting replies, I’ve been asked to take statins by my go but have declined for now as I’d like to get off pred first, currently on 3mg and have awful fatigue every time I drop, gp was ok with me delaying as I am 61 with no other risk factors so even with a cholesterol of 7.3. I just said I came only cope with one thing at a time!

[pmac22]

My cholesterol was normal before I started this GCA journey. The prednisone quickly changed that and we tried a couple different statins which gave me severe muscle cramps and spasms and my cholesterol levels kept climbing. Then they added Actemra and my cholesterol levels went into the danger zone. My cardiologist started me on a biologic, Repatha, I inject it every two weeks. That was earlier this year and now I am in the normal range. I also think this was one of the few drugs I didn’t have any adverse reactions to or even had to get “use” to it.

Peggy

[PMRpro Ambassador in reply to pmac22]

It is available on the NHS - but 5 years ago cost well over £4K a year!!

[pmac22 in reply to PMRpro]

I am fortunate that my doctor worked hard to get my insurance to cover it with only a $30 month copay.

[CathieS]

I had some leg aches when I started stating and my Dr recommended I take CoQ10, which I did and for me it helped.

[Hosers2]

Five years before getting PMR, I experienced the exact same PMR symptoms after taking Simvastatin. Over a three year period, I had rotator cuff pain in both shoulders, carpal tunnel in both hands, bad hips to the point I could not get up off the ground. I quit taking Simvastatin, cold turkey, and all of those pains disappeared within the month. Five years later: PMR. I believe statins are a direct cause of PMR and no one will convince me otherwise.

My own PERSONAL OPINION and advice would be to never take any statin. I tell anyone and everyone that statins are a dangerous drug. I am not a doctor, however, so I have not been indoctrinated by the pharmaceutical gurus to take their miracle drug.

[muddledme]

I have Glaucoma and there is some on going research suggesting that Vitamin B3 tablets may help. After taking these for 3 months my total cholesterol dropped from near 8 to 5. Despite a good diet I have had raised cholesterol since my thirties (now 75years) I did have a small retinal bleed with the 500 mg dose ?? the cause , so I stopped for about a year and the cholesterol crept up.

Now I am on 250mg Vit B 3 daily and all seems well. I am unable to take Statins as they are contra- indicated after a history of drug induced Lupus.

Both my husband and I used to get occaisonal leg cramps at night. After several months of 2 desert spoons daily of Buckwheat flakes these cramps have almost completly disappeard. The flakes are tasty and mix in well with homemade muesli.

Best wishes from a once suspected GCA patient ..(luckily only due to grinding my teeth and a mouth guard at night has fixed that).