Leflunomide and cholesterol : Hello Had blood test... - NRAS

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Leflunomide and cholesterol

virginied profile image
26 Replies

Hello

Had blood test done last week and for the first time I have high cholesterol.

My cholesterol has always been 5 and now it is 7.6. I am the same weight as before and eat the same.

My Gp just told me she thinks it is leflunomide ( side effects).

Has anybody heard about that? Does leflunomide give you high cholesterol?

My doc will contact my rhumatolog asking to stop leflunomide.

Something else to worry about..

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virginied profile image
virginied
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26 Replies
nomoreheels profile image
nomoreheels

Maybe your GP isn't as aware as mine but the disease itself puts us in the higher risk category, has that ever been considered? The LDL (bad cholesterol) should be less than 3 in someone considered low risk & 2 in someone with higher risk. I'm on MTX not LEF so I don't know whether it can alter your cholesterol but & as I have heart disease in my family plus RD my cholesterol was always included in my blood tests when I lived abroad & always within limits. Since returning to the UK it wasn't checked until my Rheumy reinstated Arcoxia (etoricoxib) & asked my GP to perform a full cardiovascular check. I was surprised to learn that my LDL was above the limit for category so my GP suggested I try to reduce it by diet for 3 months, I posted about this about a year ago under the heading "How often is your cholesterol checked?". I was very careful with my intake of saturated fats, more careful than was necessary I was told but I really didn't want to go on statins & in spite of trying to reduce it by diet (with no cheating at all!) the LDL did not lower, it got higher in fact. So, simvastatin was prescribed but I had muscular pain from that so I changed to atorvastatin & been fine, my cholesterol is well within the limits.

As RD can affect the heart we need to do all we can to be heart healthy. I continue on my Mediterranean diet but do allow myself the odd treat at weekends, well, we've got to live happily otherwise there's little point! I now have annual CV checks which includes cholesterol. My vitamin D is checked annually too amongst others, all done at my Surgery.

Hope my experience helps, may be your Rheumy will explain in even more depth.

virginied profile image
virginied in reply to nomoreheels

Thank you for your reply. Nobody mentioned to me that my cholesterol might be high now. In fact nobody asked me to do this blood test as it was my idea and I asked the nurse and she did it. My Gp seems useless when it come to RA. This was my first cholesterol test since I have been diagnosed with RA

nomoreheels profile image
nomoreheels in reply to virginied

Well unless they have a special interest they only generalise & cannot be expected to know everything, that's why they refer to Specialists. Since I changed to the GP I see now she's quite clued up as she hadn't had a patient with RD before, only OA so I'm fortunate. She was a friend before I started working in the same Practice so I suppose I'm quite fortunate I already knew her. It might be worth asking your GP to have it flagged up on screen that you should have an annual check, mine's always booked in with one of my blood tests, other vitamin checks too. It would be even better if they did a more extensive blood check through Rheumatology, that's how I knew my cholesterol was always bob on but guess that's due to cost here.

nomoreheels profile image
nomoreheels in reply to nomoreheels

Just had a thought, have you thought about using oat bran? My h puts a dessertspoonful on his cereal in the mornings, it was recommended to him. There's a breakfast cereal advertised at the mo which says it helps lowering cholesterol, similar but I'm not recommending that, it's very expensive, £11 or thereabouts.

virginied profile image
virginied in reply to nomoreheels

That's something to try then; thanks

Kathyfitz12 profile image
Kathyfitz12 in reply to virginied

Can't resist saying this. I went to GP this week as I was sure the Arava I was taking was making me feel dreadful, ......he told me he didn't know about RA drugs, & that I had the flu!

Then spoke to rheumy nurse who said stop the Arava immediately.

Just when are GP's going to bone up on RA drugs?

virginied profile image
virginied in reply to Kathyfitz12

It's a shame GP don't know more about RA (my Gp doesn't know much about Ra as well and I seem to know more about it than her). I understand they can't know everything about medication and side effects and this is why we see specialists; but they are still the link between us and specialist.

I've been on Leflunomide for years now, but my cholesterol has always been in the normal range. My problem is high blood pressure, which I think is affected by Leflunomide. Please check this out though, don't just take my word for it.

helixhelix profile image
helixhelix

Have a look on your patient information leaflet - it probably states that increased fat in your blood (ie increased cholesterol levels) is an uncommon side effect that can affect 1 in 100 people taking Lef.

virginied profile image
virginied in reply to helixhelix

Ok thanks. Hopefully I will find out what cause the number to go from 5 to 7.6.

I eat well and couldn't change much more to my diet (vegetarian; don't like cakes, cream..the only bad point will be cheese)

earthwitch profile image
earthwitch

Cholesterol is dealt with in your liver and I know many of these meds can affect your liver function so I guess it is possible, however I always understood that cholesterol could rise when you have active inflammation, so I would think its also a possibility that the meds aren't controlling your RA well enough. I know my cholesterol levels are always higher when my AS isn't controlled, and are well within normal limits when it is controlled. For me, cholesterol levels are a much better indicator of inflammation than either CRP or ESR.

virginied profile image
virginied in reply to earthwitch

That makes sense in fact as I have been having hand and wrist problems and it is now so bad that I need to have my wrist fused. Maybe cholesterol is linked to that!!

Alboro profile image
Alboro

Be guided by the rheumatologist, yourself, they are more specialist in the subject, also the specialist nurses usually have a no. you can call, ask the clinic for the number if you don't have it. it's also worth a chat with your to the pharmacist, I have RA and I always look on the Nras site.

nras.org.uk

Alboro profile image
Alboro

Do you have an annual eye check, all on Lefl should have one along with monthly blood tests. Advise the Optitions you are on it.

nomoreheels profile image
nomoreheels in reply to Alboro

Hiya Alboro. Leflunomide is one of the options I've been given for double therapy alongside methotrexate so I've been reading up on it but I've not found any evidence to suggest it can affect the eyes. I understand why regular blood testing is necessary (possible liver toxicity) but nothing about regular eye testing. Are you prescribed LEF & been advised to have them?

Alboro profile image
Alboro in reply to nomoreheels

Regular eye test is because I am on hydroxy chloroquine, sorry I didn't make that clear

nomoreheels profile image
nomoreheels in reply to Alboro

Ah, that makes sense then, I understood your reply to mean you need one on Leflunomide. I've had hydroxychloroquine in the past & had eye trouble, one reason I won't go back on it & considering LEF.

medway-lady profile image
medway-lady in reply to Alboro

Once the Arava is stabilised you do not have monthly blood tests. My next one is end March since January.

Ellioteva profile image
Ellioteva

Hi

Yes I take 40ml Leflumanoide a day and although I've had problems with my cholesterol

every time they increase my statins it goes up I started off

7.9 now it's 12.5

virginied profile image
virginied in reply to Ellioteva

Ellioveta,

Such a shame; it doesn't make sense!!

Coastwalker profile image
Coastwalker

There is a relationship between Cholesterol and Low thyroid.

Years ago before thyroid bloods were around Doctors back then knew that having 'high cholesterol' was most likely down to Low thyroid (Hypothyroidism.)

If you treat the low thyroid with thyroid medication your low thyroid should return to normal and your high cholesterol should come back down to normal.

Do Google this all yourself virginied to check it out.

Statins are dangerous.

Also Heart Doctors are NOW reporting that people with high cholesterol are LESS likely to have a heart attack than people with LOW cholesterol and even normal cholesterol.

Do Google -

drmalcolmkendrick.org/books... great-cholesterol Con.

virginied profile image
virginied in reply to Coastwalker

Coastwalker,

That's interesting as I do have under active thyroid problem as well. I might ask doc to test thyroid again.

Thanks

Coastwalker profile image
Coastwalker in reply to virginied

Do ask for a printout of any bloods done virginied and pop them up on the Thyroid Uk forum, here on Health Unlocked, like many of us do daily for other members to help you learn to take control of your own optimal thyroid health.

(You may already be on Thyroid Uk ?)

Don't expect your Doctor to know the 'Low Thyroid and high Cholesterol' link. Doctors today rely on unreliable blood tests and do not go by symptoms alone like the Doctors years ago did.

Patient experience on Thyroid Uk is that Doctors haven't a clue on thyroid problems, miss many thyroid patients in the grey areas and if you are lucky to be diagnosed, don't expect to be on the correct medication.

If you have high cholesterol it might be that you are not optimally medicated, (not saying it is though.)

Keep off of statins.

My Hypothyroid Mum took statins for a long while, she ended up with Kidney failure and is now on a grueling dialysis 3 times a week, kidney failure is a side effect of statins.

Statins can actually cause heart problems and muscle weakness amongst many ills.

medway-lady profile image
medway-lady

I've had Hashimoto's Thyroiditis for over 20 years and my cholesterol is normal. no need for statins. Surely lots of things can make cholesterol high most commonly diet. My GP is great and I'm careful about what I eat. But to be honest the medication is good and works well. It is all part of the rich pattern of Auto Immune diseases.

sandybrown profile image
sandybrown

Please Google and you many find an answer.

Mazzy5067 profile image
Mazzy5067

I commenced leflunomide with chol 5.0 and trig 1.4. After 6 months on the drug my Chol is over 9 and trig almost 4. Iv been on the same diet for 2 years and slowly loose weight. My GP had no idea this drug could affect cholesterol and the Specialist does not agree with my suggesion. I may be wrong and as the drug has made a major improvement to my function and life style I am torn. However my trigs are way too high. We agreed to restrict the use of leflunamide for 3 months on the same diet and get more bloods done. my rheumatologist wants any data I can find on this. Where can I find this data?

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