RELUCTANT TO TAKE STATINS

[Lucy11]

Hello everyone,

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?

I know I have an added issue as CVD is 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?

Any insight is very welcome and thanks for reading.

Lucy.

[cb67]

If you have a doctor who says you don't need to take it, don't. In time, they all produce intense body/ muscle pain. My cardiologist said discontinue all sugar! Now I live by the glycemic index. Healthy fats, grass fed proteins and butter, lots of veggies and lots of prep/ cooking

[Lucy11 in reply to cb67]

Many thanks. Diet changes for RA Is a very hot topic. Paleo vs Vegan vs gluten free/dairy free/sugar free as well as the one recommended by NHS Mediterranean.

The two biggest are vegan and Paleo which couldn't be more opposite. The internet is full of people selling their particular diet with the hope that RA or other AI diseases can be reversed without needing to take immunosuppressants, etc.

I've since taken out most sugar and processed foods while sticking close to vegan. I may try a flip this winter and try a diet closer to the one you've suggested. It's all a bit overwhelming but I'm thankful for forums like this as it helps seeing how others are managing their health choices.

Anyway, thanks for your reply. I'm going to hold off on the statins and continue to try to eat heart healthy, RA healthy and continue my sport in hopes of managing some semblance of control over my life.

[Penel in reply to Lucy11]

Perhaps also have a look at the research on gut bacteria and the importance of what you eat. There is evidence that taking the probiotic Lactobacillus casei can help with RA painful joints.

cleverguts.com

[Lucy11 in reply to Penel]

Thanks Penel,

You may find this interesting. I had my gut microbiome tested and did not mention to the lab that I had RA.

The lab isn't meant to be diagnostic of any disease. It basically measures the diversity of bacteria in your gut and compares it to the broader population.

The results came back as 95% healthy. Obviously, I'm not but I bring this up as the only bacteria that was much lower than the general population was Lactobacillus. How about that?

I was actually asked to do it through work and it was paid for by my company but since the results were a comparison of a population I knew nothing about I didn't pay too much attention to it.

Perhaps I should look into adding Lactobacillus! If I'm correct this is found in fermented dairy products and or/ yogurt? Many of those who claim to have gone off RA meds through diet strongly believe that dairy should be eliminated 🤔. Nonetheless it's really interesting.

Thanks for your suggestion!

Lucy.

[Penel in reply to Lucy11]

Certainly very interesting. Although it's preferable to use food, perhaps it would be worth trying a probiotic supplement as it might eliminate the problems you could get with dairy?

[Flissie in reply to Lucy11]

Hi Lucy

Yes things can seem a bit overwhelming though my situation is a quite a bit different to yours. We seem born with a genetic profile which, coupled with how we are fed in our family, then how we feed ourselves together with our lifestyles/how we deal with stress eventually means there is a pattern of symptoms/markers that need attention or are indicative of a range of underlying situations that do not go away! The older one gets the more such situations get entrenched/get worse. I'm now 67. I had (and I'm pretty sure I still have) high homocysteine - which I neglected to deal with 3 years ago along with familial high cholesterol (was dealing then with endometrial cancer and resultant removal via a full hysterectomy).

I came into the "I need help" position approx 6 weeks ago with high blood pressure (160/120). I have been feeling so tired for a number of months, coupled with a smallish gardening wound on one leg that kept refusing to heal; and swollen ankles/feet. For starters I was given "water pills" Furosemide and yep, it stated on the packet that it can increase cholesterol and at the same time Ramipril to lower the BP. The ankle swelling went down in 5 days though it rears its ugly head if it's hot etc. I remain on Ramipril at 5mg ffor the present with the GP's "promise" to look into statins with me as a followup - that's next month.

I'm stuck with some tinnitus that I cd swear I didn't have before the above two medications. In the meantime, I've cleared up my diet A LOT, lost a bit of weight; am a bit more active - I know I can do more in that department and need to plan it out and keep away from the computer of course.

Looking around online I see that bread/wheat products together with sugar are the major no-nos along with salt, alcohol, junk foods. Surprisingly, I don't miss bread.

However, like you, Lucy, I don't want to be on statins. Whether good quality supplements eg plant sterols; coQ10, flax seeds etc etc etc with dietary revisions would bring the cholesterol down sufficiently I don't know - anyone? ie are statins the only effective way to deal with familial high cholesterol? In which case, which statins? I don't want to work my way through the cheapo drugs - I've read the horror stories.

BTW My current cholesterol which was taken in July 2017 was 9.24 mmol/L - it has slowly crept up over the years. There is no detail in the NHS report; triglycerides were 4.69 - way over. That's it

I have also had a thyroid problem for some years - diagnosed as a multinodular thyroid - I declined any medication. The latest blood results for the thyroid are fine (apparently) TSH 1.33 mu/L but I'm aware there is more specific testing that the NHS doesn't do;

B12 and folate (13ng/ml) are fine too (though the B12 looks on the low side at 302 pg/ml) or may be that's OK with the NHS? I haven't been checked for the MTHFR mutation (which I believe wd present me with more dietary restrictions) nor has my CoQ10 status been tested - I will ask next month and report back. I find the testing, and the numbers fascinating - just wish they weren't mine!

Good luck Lucy on your journey - as far as I can I will be in control of things - I have now entered a world with specific dietary needs and unknown/at risk health situations.

[cb67 in reply to cb67]

Lucy, I see people are suggesting a pro biotic. When buying look for one that contains acydophylis, bifudus and FOS

[tobytoby]

I t ook crestor for a week and my leg muscles started to collapse, very serious so stopped and do not take any stations. Sometimes you have to just forget this med and if necessary go to a natural doctor ...R Hart BC Canada

[Paul12]

I will reply the same as I have replied before.

There are some people who have minor side effects from statins.

There are a few who have totally ghastly side effects.

There are some - nocebo - who have side effects BECAUSE of what they have read about statins

There are some who have NO side effects

I therefore suggest you copy the post you have made and go to the following facebook groups - ALL of them not just one:

Statins silent killer

Side effects statins

Stopped our statins

See what they have to say

[ITYFIALMCTT]

Lucy11 - you have erosive RA so this is less relevant to you but there is some reported association of erosive OA and dyslipidemia: medpagetoday.com/rheumatolo...

The research paper: ard.bmj.com/content/early/2...

As for lactobacillus - it's not always dairy, it's part of the bacterial profile of brine fermentation for vegetables, fruits etc. E.g., sauerkraut, fermented carrots and dill, brined tomatoes etc.

[DakCB-UK]

"if it's genetic then statins are the only way to control it. Is this true?" In a word: no. Even ignoring the various contraversial and hard to study diet and lifestyle changes, there are other drugs, including absorption inhibitors, bile acid sequestrants (which make the body remove blood cholesterol to replace the acids) and now new, expensive PCSK-9 inhibitors.

There's also some suspicion that the physicaly active are more at risk of side-effects on statins, which is ironic given that physical activity reduces cholesterol levels wihtout drugs in many people.

[sos007 Ambassador]

The answer to your question is here:

healthunlocked.com/choleste....

[sandybrown]

Is the treatment of high cholesterol really that controversial?

May be you ewer looking for a simple answer!

Media and multi media has been giving out a lot of information on cholesterol and human health.

The vies of taking medication to control cholesterol is changing. Cholesterol medication (statin) can help some people depending up age, sex and few other factors!!

Some people say do not look at total cholesterol, blood test sample gives total cholesterol and other lipid numbers. Controlling food and drinks intake, watching out for free and hidden sugar with regular exercise can help towards healthy life. You may want to look at the side effect of the statin you are taking every other day.