Two years ago I was diagnosed with erosive RA. I was a competitive elite endurance athlete most of my life. I've never smoked and was never overweight and my diet was always really clean.
My first Rheumatologist two years gave these blood results to me and never mentioned the need for statins:
Triglycerides 0.32
HDL 2.35
LDL- 4.4
I've since changed Rheumatologists and asked the new one if he would check my cholesterol again. This was prompted by me, not him.
The results were very close to the ones taken 2 years prior with only a slight increase in LDL. 4.5
This doctor wanted me to go on 10 mg of Crestor.
I said I would try 5mg and it brought my LDL down to just under 3 which he was happy with. I am very reluctant to take statins as I have enough with my RA meds. I decided to take 5 mg Monday, Wednesday and Friday. We took bloods after one month and my LDL went back up to 3.79
My doctor was on vacation and I spoke to his colleague who said that I obviously have familial high cholesterol but not to worry as my sport will help protect my heart and his suggestion is not to take statins.
It's really confusing as I get mixed messages from three different doctors and I really don't want to take statins. There is nothing more I can do with diet and exercise and I understand if it's genetic then statins are the only way to control it. Is this true? My RA is very well controlled at the moment and was able to partake in a bike race this past weekend that was 4 hours long in the mountains so as far as helping to lower the cholesterol with diet and exercise seems to be lost on me.
I know there is an added issue as CVD is at a higher risk if you have RA but why would two Rheumatologists not be concerned and one is who didn't call for the cholesterol test until I asked?
Is the treatment of high cholesterol really that controversial? Does anyone else have high cholesterol and decided to forgo statins?
Any insight on what others doctors have suggested whether for or against statins is very welcome and thanks for reading.
Lucy.
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Lucy11
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Yes there is a lot of controversy. Not easy for the patient Here is what science says about cholesterol and why it is so important for us. Why statins may do more harm than good.
Thanks for this Simba. Interestingly, I don't have hypothyroidism and have since had my hormones checked and don't have estrogen dominance which was a bit of a surprise to my endocrinologist. hmmm. Not sure what other investigations I can do.
Since RA most probably seems to be a metabolic disease where hormonal dysfunction is central, it only stands to reason that getting your metabolism to function optimally does correct many underlying dysfunctions like too high or too low cortisol, cholesterol, thyroxin and progesterone. Optimal metabolic rate as seen in temperature and pulse rate through the day. Before starting the diet Dr. Ray Peat recommends for reaching this optimal basal rate I had all the symptoms of hypothyroidism without being aware of it. One month on the diet I have normal body temperature, less symptoms and more energy. In other words this is really helping with my RA. High cholesterol and thyroid problems often go hand in hand.
Have been on Statins for 30 years. Each time I see a new doctor they check my cholesterol levels ...both fine on 10mg per day. So ever eager to prove they know more than the previous doctor....they say I don't need them. Then six weeks later my cholesterol levels have risen through the roof....LDL WAS 6+. Back to 10mg per day....all levels within normal limits.
I have familial high cholesterol...mother & aunts all had either heart attack or stroke ...so I stay on them as there doesn't seem to be any definitive evidence either way, I'd rather not risk not taking them.
Although there are different types & you need to find the one that suits you.The first one I took gave me such muscle pain I just stopped taking statins until a different doctor explained the different types. That was before I was diagnosed with RA....I have no other health issues.
Have levels tested regularly now & all seems fine.
This could well be opening another huge can of worms.....cholesterol and statins do stimulate debate/argument.
If your levels are in mmol/l then you are not in the horrendously high category so it's perhaps something to reflect on slowly rather than instant reaction, and maybe try upping your oat intake specifically to see if that has an effect? I imagine that the levels plus your young age meant that the red flags weren't waving furiously as far as your rheumies were concerned.
Yes, RA is said to increase CV risk but it's not entirely clear whether well controlled RA can have an effect on reducing that risk. Especially if all your other risk factors are ok as you exercise, are normal weight etc etc. Have you checked your Qrisk2 score to give you a better feel for your personal probabilities? It could well be that you can wait many years before you need to fret.
My original rheumatologist wanted her patients to stick to a level under 4, and I was hovering just above that. So she basically said if I take daily exercise then really it was up to me so I decided not to take statins. I personal believe that cholesterol does serve a useful metabolic function and I wanted to avoid more drugs that my liver would have to process. So I felt that a little bit high was ok for me.
Roll forward several years and I developed a heart valve problem (nothing to do with cholesterol) my BP rocketed and my cholesterol levels started climbing. Ok for a normal person, but edging into risky for a person with RA and heart issues (plus family history of heart issues). So somewhat reluctantly I decided to accept BP meds and statins. Well basically I have zero side-effects from either of them soI'm not quite sure what I was fussing over! Yes some people do struggle with statins but it does seem to be yet another drug where individual reactions are variable.
As an aside, isn't Crestor a statin? And I hope you did well in your bike race....
Thanks Helix. Yes, levels are in mmol/l. It's been as high as 4.99 Interestingly that's when my RA was really not controlled.
Indeed, Crestor is a statin but I begrudgingly agreed to take 5mg for one month rather than the 10mg he initially wanted me to take and it was enough to bring my LDL just under 3. It's when I went a step further and started to take 5mg M-W-F (so three times a week) for one month but within that month it went back up to 3.9 and I've since stopped altogether (it's been one month off).
I think I'll hold off completely for now and wait and see if your suggestion of upping my oats helps at all but if it climbs back up to 5 then I suppose I would consider taking 5 mg of Crestor again.
The bike race went very well. I was third overall and 1st in my age group. These days I don't take any risks on the descents--some of them are 20-30 minutes long. Being on a Biologic I can't even imagine how long it would take road rash to heal so I make sure to keep the rubber side down as much as possible! Thanks again!
It doesn't make sense to me that age is a risk factor that makes doctors want to put people on statins. Age is a risk factor for death, OK, and that has to be from something. But it doesn't make sense to me to start medication which is intended to be a long term protective in reducing plaque formation in people with raised LDL.
And the numbers needed to treat mean that most of us won't benefit either. As you can tell, I'm not a fan.
I feel sure that in a few years time someone will discover that heart attacks are caused by an infection (or something) rupturing the plaque, or that something else causes plaque to be deposited after minute damage to the wall of the blood vessel. There are so many unknowns and so many surrogate end points to trials (and they are mostly on men, too!) that I feel the whole thing has been a big con by the drug companies.
Apparently your CV risk increases with age...so doctors start to get alarmed with risk starts creeping over X%. If you look at Qrisk2 you see it factors in age, sex, weight, cholesterol levels and various diseases so you can then make decisions for yourself. Which is what I prefer doing than taking things just because the doctor says so. And maybe the data is not perfect, but it's enough to help me decide things.
But yes the Ben goldacre piece is, as ever, well put together. If I didn't have so many risk factors now I would have made a different decision.
Thanks, but I've read quite enough previously on both sides of the debate and am happy with my decision. If new information comes along that makes things more conclusive then it's a different matter, but right now all the information is basically the same.
I thought this thorough article on diagnosis and treatment of high colesterol from a scientific view point may be of help since I do know that everything that helps us understand the root causes of our dysfunctions gives us better ways to tackle the situation and puts in a more objective perspective the different treatment options, which I feel you have seen as very important.
My husbands GP tried to get him to take statins for years because his cholesterol was always high but my husband refused. Now he has a leaky heart valve , nothing to do with cholesterol , but he had to have an angiogram just to check , guess what, all his arteries are completely clear . Just goes to show high cholesterol does not cause blocked arteries .
I have seropositive RA and Sjogrens with a high cholesterol but I won't be taking statins that's for sure!!!!
Rosemary
From my knowledge as an ex nurse, it is the LDL that is the problem that would make him suggest the Statins.
Get that down and you are good. Have you tried liquid fish oil, excellent on cholesterol as well as your joints. Good luck.
Hi Lucy. My cholesterol has always been high (6.8) and the nurse always refers me to the GP and the GP always ignores it. He says I have familial high cholesterol. I exercise and try to eat well. My mother is always taken to task as she has high cholesterol and the nurses tell her to stop drinking - but she is teatotal. My lecturer who is slim and has been an elite athlete for her entire life has the same high cholesterol level as me.
My brother who is obese and does no exercise what so ever has a cholesterol level of 3. The girls he works with who are slim, exercise and eat a low fat diet all have high cholesterol.
I think the consensus is the link between high cholesterol and heart disease is not fully understood even if in fact there is one which seems to be in doubt. My mother had serious complications on statins and so did my father.
As with anything it is more about waying up the likelihood against the risk of the drugs.
I believe personally that there is a link between high cholesterol and sugar but apart from that worrying about will probably cause you more issues xxxxx
Thanks for this. My sugar intake is quite low. I do have some sugar if my race is longer than 3 hours. I just can't seem to get around it and I've tried. I've really tried but half Coca Cola mixed with half water gets me over a mountain like nothing else.
I'm convinced the genetic factor for high cholesterol is such that for me changing my food choices won't be enough to control it as four of my aunts have very high cholesterol and one of them has CVD.
I'm going to hold off on statins for the time being and revisit if my LDL goes above 5. I've taken the test that Helix above mentioned and my risk at the moment is 3% for stroke and heart attack. Both of my parents have not had a heart attack or stroke.
I really appreciate you taking the time to answer. Thank you. I hope all is going well for you.
I was told back on July 17, 2018 my cholesterol was high and was put on 20mg Lipitor. I hit a huge diet back then keeping candy and ice cream out of the diet totally. Have only eaten 4 servings of meat. Have replaced meats mainly by nuts for protein. I've lost 13 pounds and have dealt with some swelling of body parts that have been quite painful.
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