lefluomide and the menopause: I am currently struggling... - NRAS

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lefluomide and the menopause

sallyeb profile image
28 Replies

I am currently struggling with menopausal symptoms. The night sweats are the worse. I don't remember the last time I had a full nights sleep. I am currently taking lefluomide for my RA, which is working very well, and now need to think of something to take for the menopause. According to my GP HRT is not an option with the lefluomide so she has started me with an anti depressant which has made no difference at all. Does anyone have any experience and other ideas about what I can possibly do?

Sally

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sallyeb
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28 Replies
helixhelix profile image
helixhelix

If I were you I would ask your doctor to be more specific about why HRT is not an option with Leflunomide. I have just looked at the patient information leaflet and on the British National Formulary website and there's no absolute contraindication listed.

For some things (such as methotrexate & Leflunomide combination) it does say use with caution and monitor - but no mention of any of the HRT drugs. There could well be some other reason why your GP won't prescribe it for you, but you need to be treated like an adult and given the facts. If she won't discuss then go see another GP.

ITYFIALMCTT profile image
ITYFIALMCTT

Just to second helix helix - unless you've had a stroke, cardiac incident or something that would otherwise prompt scrutiny of HRT for you (and that's just the HRT), I can't see that there are any specific warnings about Leflunomide +HRT.

I would pursue this further. I regret not exploring HRT for peri-menopause etc. I'm 12 years and counting with disrupted sleep, hot flushes, soaking perspiration etc.

sallyeb profile image
sallyeb

Thank you for getting back so quickly. I will get in touch with the rheumatology department and ask for their thoughts

Sally

Nettac profile image
Nettac

Night sweats are awful. There are other reasons why hrt can't be used. If memory serves me correctly, leflunomide comes with a warning of possible increase in risk of cancers. Hrt has a similar risk.

I personally haven't taken hrt because of that risk. I could be wrong of course (often am!):-)

helixhelix profile image
helixhelix in reply toNettac

It's a small risk, as are so many things. Probably equivalent to the risk of drinking alcohol in moderate amounts. So to me it's a personal choice about which risks you'll take and whether the improvement in quality of life is worth it.

in reply tohelixhelix

I took the risk , took HRT for 3 years. Got breast cancer, since then I've developed OA, Vasculitis and because that is treated with very high steroid doses, I now also have osteoporosis . Quality of life, what's that? :-(

ITYFIALMCTT profile image
ITYFIALMCTT in reply to

One of the reasons that I wish I'd considered HRT is because two of my siblings have early osteoporosis. In addition, altho' my sleep history was already poor following some head injuries, peri-menopause etc. worsened it - and with all the usual metabolic consequence of very poor sleep, I don't think this has done my muscle quality any favours and has its own set of chain-reactions.

It's always such a very individual set of risk:benefit isn't it - it would be so helpful if it were more straightforward.

Nettac profile image
Nettac in reply tohelixhelix

Yup.

sallyeb profile image
sallyeb

It's all just so complicated but the sweats and all the rest are all getting to me now. Thank you

ragurl profile image
ragurl

Hi! I am in leflunomide and HRT. I am take 100 mg of progesterone. I needed it to help me sleep through the night and those night sweets. It has helped immensely unless I eat a ton of sugar right before my cycle. So I am wake up about once a month now. My GP never mentioned an interaction between the medications.... I will have to ask the next time I see her.

sallyeb profile image
sallyeb in reply toragurl

Thank you for that. I was particularly looking for people who had been prescribed HRT. I will mention it to GP when I see her later in the month

ragurl profile image
ragurl in reply tosallyeb

Your welcome - I am 48 and been on leflunomide for 10 years and progesterone for a year. Keep me posted.

helixhelix profile image
helixhelix in reply tosallyeb

I'm on HRT, but with methotrexate, hydroxychloroquine & sulphasalazine rather than Lef. My rheumy knows and is ok about it, as is my gynaecologist.

sallyeb profile image
sallyeb

Thanks both . I'll keep you posted xx

Nettac profile image
Nettac

If there is a history of cancers in your family, that should be taken into consideration .

For me the risks far outweighed any benefits. I'm not keen on taking a vast amount of drugs, as the risk of a nasty reaction is increased. It's a personal decision.

It's important to do your own research. In my experience, doctors are often not clued up on the side effects of drugs. In fairness...how could they know all the possible side effects and contraindications! It makes sense to do your own research.

Hope all goes well.

helixhelix profile image
helixhelix in reply toNettac

Not sure I agree with you Nettac - doctors have access to far better databases of drug interactions than we do, and have training in interpreting these sorts of things. It's more that sometimes you have to 'encourage' them to think things through and look things up.

Nettac profile image
Nettac in reply tohelixhelix

I did say in my experience. :-)

On more than one occasion I have been given a drug that was contraindicated with another. Doctors are human beings, and as such capable of making mistakes. They are not God's.

I check everything. I could have died.

Often doctors focus on the disease and pay scant attention to the damage done by the drugs given out. If you are not careful you can end up with more problems than you started with.

Just my view...and experience.

helixhelix profile image
helixhelix in reply toNettac

Agree we should always check everything!

Witness2 profile image
Witness2

I decided that since I have opted to take a toxic drug (Enbrel) for my RA, I wasn't going to suffer the menopause. Enough suffering for one lifetime thanks! Fortunately my Gynae is enlightened and was one of the first to reassure that the risk using oestrogen-only HRT is neglible. (This might not be true for people with other cancer risks). I would not and could not be without it. Something is gonna get me one day so until then I am choosing quality of life.

helixhelix profile image
helixhelix in reply toWitness2

Absolutely! I had to come off it briefly recently for investigation of gynae problems, and I had forgotten how unpleasant it was. Sleeplessness, anxiety, sweats, loss of appetite, and to top it all my RA flared too...

Witness2 profile image
Witness2 in reply tohelixhelix

Glad I'm not alone! My Gynae also says taking oestrogen helps my connective tissue, protects my heart and other things I can't now remember - maybe it doesn't help memory particularly!!

girli1111 profile image
girli1111

Sorry to hear you're struggling. I have rheumatoid arthritis, on hydroxychloroquine and methotrexate. Now in surgical menopause at 48 as I had ovaries removed because of severe endometriosis. The gynae referred me to a specialist menopause clinic at the John Radcliffe in Oxford where a really detailed history was considered (including that I had a DVT caused by ruptured ovarian cyst), before a gel oestrogen and oral progesterone was prescribed. Early days for me still, but I'm hoping it will help as the sudden menopause seems to have caused massive ra flare. Might be worth asking for a referral to menopause clinic if available as the lady I saw really seemed to know her stuff!

Jules13 profile image
Jules13

I'm on hrt and it doesn't interfere with my RA medication. Has your doctor checked your fsh levels? It's a simple blood test for hormones and will show if you are definitely menopausal?

If you have a raised fsh then there are many options. I'm on a bioidentical oestrogen gel which has very low side effects and works well for me but it took a year for the right treatment to be found. It's trial and error I'm afraid but I would say your doctor has chosen a bit of a lazy option with antidepressants. It's good for stress and upset but doesn't necessarily cure the problem. I would chose a therapist over anti depressants any day. They get to the source of the angst rather than mask it with medication. But first step is make sure it's menopause. Ask for the blood test. X

sallyeb profile image
sallyeb in reply toJules13

She did the blood test before she would prescribe anything

S

Jules13 profile image
Jules13 in reply tosallyeb

So your fsh levels were normal?

Flash180 profile image
Flash180

I don’t take lefluomide but I have just been through the HRT decision. Just some stuff I learned in the process:

The antidepressant doesn’t work for everyone but it does some. Unfortunately with a host of other side effects and you can’t just stop taking it if you don’t like it. You have to taper it off. This is true for almost every antidepressant my doc discussed with me.

Some cancers feed on estrogen. So if there is family history they are reluctant to go that route. That was my case so I avoided it at first. BUT...I gave in recently because I couldn’t suffer the RA, the meds and the hot flashes. I was miserable. I first checked into bioidentical hormones. In the states they are available over the counter and sometimes through prescription from your doc that you can get from a compounder. I started with estriol, the weakest for of the estrogens and if my memory serves me correctly, the lowest risk. I also went with a bioidentical progesterone cream. That actually worked pretty well for a while. But it wasn’t consistent.

If your beginning menopause, the first horomone to decline is progesterone. It’s also the one that helps you sleep. If you get a script form your doctor, make sure it’s progesterone and not progestin. Progesterone is bioidentical, progestin is synthetic and actually somehow related to testosterone. I don’t know why it is even an option, it has such a negative effect on women, but....I’m not a doctor, just my opinion. Progesterone is necessary if you still have a uterus and it helps fight estrogen dominance. (Another nasty thing, don’t get me started haha)

I ended up with an estradiol patch and a progesterone pill. My doc wanted to give me a combination patch but it had progestin and I didn’t make it 4 days on it. I had horrible flushing and sweating on it. It took some calls but we worked it out, the doc was trying to keep it easy with one patch. I don’t care if I have to take a patch and a pill if it means keeping my hair. :) (and avoiding other issues)

Do your research. My experience was that doctors were happy to prescribe horomones but their in-depth knowledge of them seemed to be secondary (or worse) to their main practice. I feel so much better now! It did feel like I was being a pain to my doctor but I knew what was going on with my body and I am so happy that I spoke up and pushed for what I wanted.

You don’t have to suffer and there are pretty safe options out there. Just do some research before you talk to your doctor again. Good luck to you!

Nettac profile image
Nettac in reply toFlash180

Ah yes the issue for many people is that they often have several different disorders. For each disorder you get a specialist, who may well be brilliant at their own specialism.

Quite often each specialist does not communicate with other specialists. The patient is seen as a series of symptoms...or parts, and not as a whole. Medication is handed out by each specialist, so that many patients can be taking enough medication to start up their own pharmacy! Thus increasing the risk of side effects, and drug interactions.

dwsurquhart profile image
dwsurquhart

I would be more concerned about the night sweats. I woukd ask your gp or specialist for a CT scan. The cause of the night sweats I had was an enlarged spleen, and many enlarged lymphnodes in my abdomen. This was due to the leflunomide and mtx the dr had me on.

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