statins and prednisone dilemma : I’m 62yrs ,13... - PMRGCAuk

PMRGCAuk

11,775 members21,486 posts

statins and prednisone dilemma

Denis61
Denis61

I’m 62yrs ,130 pounds, female .I’m following a keto diet and walk or swim most days.

I was diagnosed with PMR November 2019 and have tapered to 15mg of prednisone from 30 mg .

But in March 2020, my cholesterol result came back as 378, which is off the charts high. So I eliminated cholesterol from my diet.

Yesterday, I had another cholesterol test and it was still extremely high at 332

CHOLESTEROL

Your Value

332.0 MG/DL

Standard Range

<=200.0 MG/DL

OPTIMAL < 200 MG/DL

BORDERLINE HIGH 200-239 MG/DL

HIGH 240 MG/DL OR GREATER

ATP III GUIDELINES (NATIONAL CH

My doctor says it is due to the prednisone and advises me to take 20 mgs daily of Rosuvastatin.

But honestly, I’m having second thoughts about taking statins.I’ve heard so many horror stories.But I don’t want to suffer a heart attack or stroke either.

I’ve cataract surgery booked next month which I acquired from the prednisone and now this!

What should I do? I’m in a dilemma.

I would very much appreciate some honest advice.

30 Replies
oldestnewest

I am not sure what I would do in your case in taking statins. They recommend you should take a statin if you have a hereditary condition called familial hypercholesterolemia or if you have had a heart attack or stroke, but I assume that is not true in your case. A huge number if people do take statins.

Out of interest how have you been able to swim over lockdown? Even now my swimming pool is difficult to use, I have to book and the changing rooms are closed.

Denis61
Denis61 in reply to piglette

My neighbor has a pool in her backyard!

I live in Charleston SC and it’s very hot and thundery at the moment.

piglette
piglette in reply to Denis61

You were lucky, in UK we were not allowed to use friends’ pools, although we can now.

PMRpro
PMRproAmbassador

Diet was never going to make much difference though you have done very well - the pred is making the liver make extra cholesterol which is where most cholesterol comes from.

What is your HDL level? That is significant too. And do you have any history of cardiovascular problems?

There is considerable evidence that in women who have had no history of a CV event, taking statins prophylactically doesn't make a difference. It DOES help prevent a second event once you have had one. Different story for men - taking a statin will reduce the chances of a first event as well.

I see you use a keto diet - maybe adjusting that might help? It can caused raised cholesterol in some people. You could try adding some carbs to your diet - not too many though

medicalnewstoday.com/articl...

Denis61
Denis61 in reply to PMRpro

Thank you for your reply.

My HDL level is 112 MG/DL

And I have no history of cardiovascular problems.

I like the idea of more carbs😁

PMRpro
PMRproAmbassador in reply to Denis61

No wonder your total is astronomic!!! Above 60 is good high!

I'd give it a few weeks of non-keto and see what happens!

nickm001
nickm001 in reply to Denis61

If you are going to add carbs, add "slow" carbs like cabbage, and vegs... skip bread, potato, rice or fruits.

Denis61
Denis61 in reply to nickm001

Great advice . Thank you.

Kulots
Kulots in reply to Denis61

Here are some of the links that might help your cholesterol concern... Dr. Nadir Nali youtube.com/watch?v=qXtdp4B... and Dave Feldman Cholesterolcode.com

Denis61
Denis61 in reply to Kulots

Thank you !

Yes I understand your kind of dilemma. By another example - recently after realising I am probably eating far too many fats - ostensibly to counteract not eating many carbs at all - my gallbladder has started to feel inflamed. A few years ago prior to PMR/GCA I tried a very low fat diet for a few months and developed gallstones then and now I am at the opposite end of the spectrum of 'too much and/or not enough'. I am about to get my cholesterol checked as I have refused such tests in the last few months with no intention anyway of ever taking statins for the kinds of reasons you mentioned. I am about to see a specialist to maybe get on a course of Actemra after more than 3 years on Pred and unable following another recent flare to reduce below 22mg and hoping this may help reduce the longevity of PMR/GCA and therefore some of the side effects of Pred .

Sometimes this disease presents real conundrums and we are all individuals who must steer complex and at always somewhat unique courses through such contradictions - the side effects of drugs obviously being central to all this. So hope you manage to find your best way through soon - life is nothing if not complicated !!

Best wishes

Rimmy

Denis61
Denis61 in reply to Rimmy

Best wishes to you too.

Hi Denis61. I'm 62 and had raised cholesterol picked up 7years ago. I managed to bring this down myself with diet and exercise but eventually I was prescribed Simvastatin and remained on this for several years. I'm 15mths into PMR and now take Atorvastatin 40mg daily and have been fine on this (as I was on Simvastatin) You of course do indeed hear of people who have a 'horror story' to tell but it's like the news......good news is no news!! There are truly many more people who live very comfortably on statins with few or no side effects. I'm a person who wouldn't even take a paracetamol unless absolutely necessary so I was hugely reluctant to begin statins. However, when it became foolhardy to continue to not take them, I did. My cholesterol is now well maintained at a very low and safe level with no adverse effects, despite taking steroids, beta blockers and medication for osteoporosis!!

If you go online to research negative aspects of a medication (or condition) then you'll find it in abundance, because there will always be people who want to share that kind of commentary, but it really doesn't mean something is always bad! We're all different and respond differently and if you found you were reacting to the statins adversely, there's nothing to stop you discussing it further with your GP or specialist. You are in control. High cholesterol (I eventually was diagnosed with hypercholesteralemia) most definitely increases your risk of heart and circulatory issues, and don't let anyone tell you otherwise so it's important to make the right decision, but it has to be the right for you when you've weighed up the risk. My levels went from 12mmol/L (dangerously high) down to 4.2mmol/L (very low) within 12wks. It's now well maintained at that level with the Atorvastatin, a healthy low fat diet (cutting out saturated fat, but NOT healthy fats!) and some exercise (within my current and changing capabilities) All these things in combination work to lower cholesterol levels.

Don't forget that we need 'good' cholesterol (HDL cholesterol) but not the bad (LDL cholesterol) I hope that has been helpful. Please don't worry. It'll be ok.

PMRpro
PMRproAmbassador in reply to Kendrew

"at a very low and safe level " - there is no very low safe level, particularly for the elderly where low cholesterol is associated with a higher rate of death from all causes. There is a U-shaped relationship - very low and very high are both undesirable.

Having familial hypercholesterolaemia puts you in a different category.

Kendrew
Kendrew in reply to PMRpro

With the greatest of respect, this is one issue I'm pretty clued up about, and there is far more research and evidence to support cholesterol levels of lower than 5mmol/L lowering the risk of coronary and circulatory events than otherwise. I am aware though that there is also some research supporting your comment but it always refers to excessively low levels being harmful and certainly doesn't advocate that high levels are ok. High levels of LDL cholesterol cause plaques to form on the linings of the blood vessels which in turn can form clots, and I nursed many patients for who this sadly had happened. Until there is more extensive evidence though, I for one would not want to put this to the test!! Particularly as my mum died at 48yrs from an unexpected heart attack and the report revealed a very high blood cholesterol level. Because my most concerning level had been 12mmol/L......a reading of 4.2mmol/L is very low compared to that, and quite safe according to my cardiologist. I apologise to anyone if I mislead you on that. That would not ever be my intention

PMRpro
PMRproAmbassador in reply to Kendrew

I did say that having familial hypercholesterolaemia does move the goal posts. But most of us don;t have that,

Kendrew
Kendrew in reply to PMRpro

That being said, it would still be highly unusual for any cardiologist to not recommend that cholesterol levels should not exceed 5mmol/L for anyone. I hear what you were saying though.

PMRpro
PMRproAmbassador in reply to Kendrew

Mine agrees with me about my use of a statin - there is a large note listing the drugs I must not be given. Including statins. My cholesterol is rather above that but my experience of a statin took several months to recover from - I only took a half dose for a week!

Kendrew
Kendrew in reply to PMRpro

I understand completely why they then would not be acceptable for you to take. If they have an adverse effect, then of course it would not be sensible to continue. Thankfully, the majority of people will be mostly ok. It won't ever be 'one size fits all'. I'm sorry you had such an unpleasant time whllst on them......there's more than enough to deal with from the PMR/GCA alone. Must have been a challenging time for you.

Denis61
Denis61 in reply to PMRpro

Oh dear !

Denis61
Denis61 in reply to Kendrew

Thank you for all your helpful knowledge and reassurance.

Good morning I don't have the technical knowledge, of many the fantastic contributors to this site, so I can only describe my own situation. I am on the way down from 30mg of Pred., 20mg at the moment and hopefully, starting to taper down towards 15mg from Friday, over many weeks. I have been on Rosuvastatin for a few years now but only at 5mg/day. I was started by the docs because my cholesterol was slightly high and that plus age made it seem a sensible thing to do. The first statins I was prescribed were dire and gave me more aches and pains than my OE and the Rosuvastatin was the only one that had no obvious side effects. My cholesterol levels have been absolutely fine since I started on Pred in July ( had two blood tests since then and another one in a couple of weeks). I'm on no particular diet but try to eat/drink sensibly, plenty of fruit, veg etc. Haven't got back to swimming yet, but that was never a favourite as for some strange reason, swimming plays havoc with my OE, always did right from physiotherapy back in the 90's, but I do manage to walk the dogs 3 times a day, not long as in past times, but enough to keep them and me fairly happy ( relative term). I probably need to get another eye test in the near future as on my last visit the optician did mention that there was evidence that cataracts were starting to form, although nothing to worry about. Hope you manage to everything sorted to your satisfaction. It is amazing how one disease becomes so personal, with us all, generally, being affected in very different ways.

Denis61
Denis61 in reply to Bcol

Thank you for your reply. You have been very helpful. All the best to you too.

Would just also like to add that what PMRPro said about diet not making a difference is generally true as your body controls to a greater extent what your body cholesterol level is set at, but in actual fact, it can make a difference as I proved myself. When I was initially diagnosed, I asked for an opportunity to try and control it myself, I went from 7.5mmol/L, down to 4.3mmol/L, through changing my diet and including more exercise. Whenever I began to 'slip up' on continuity of either one of those things, my levels would be raised again. My specialist was so sure that that lower reading couldn't be right that he repeated the blood test. The result was 4.3mmol/L again! Happy days. So, never say never!

I have been on statins for more than 15 years now - simvastatin, atorvastatin and rosuvastatin. None of them caused any of the side-effects you hear about. I did try very hard to reduce my cholesterol levels by diet and exercise and after 5 months, only managed a 0.5 drop. Cholesterol is mainly made in the liver and diet has little effect on the numbers. I firmly believe that pred has a major effect though - along with family disposition.

Denis61
Denis61 in reply to Odosmum

Yes that’s what I think too.

I can't help you decide but I am 85% sure that statins caused my PMR and 99% sure they caused other problems that ruined my quality of life. Specifically frequent cramps in unprecedented places even when I hadn't exercised or exerted myself. Also numbness and pins and needles in fingers toes right arm and occasional lightning shafts of pain in calf and stomach wall.

I've kept in shape all my life, I know my body.

Since I stopped statins 12 weeks ago, all the new problems have gone except still a little numbness in right thumb and index finger.

You have a big decision. To strike a balance between quality of life and risk.

I have milder condition than you -AF and chose quality.

I wish you the best.

David

Denis61
Denis61 in reply to Legsy0714

Thank you for input. I’m glad you made it through . Your experience is very helpful to me.

I wish you the best too.

I’m no doctor but 5mg brought my cholesterol down. Such a big dose to start. A lot of people have muscle aches. Take it slow.

Denis61
Denis61 in reply to Lejazzhot

Thank you for your help. I appreciate hearing this.

You may also like...