New medication - side effect worry

Hairdresserwithra

hi, I’m 36 with 3 young kids and my dr has recently started me on leflunomide along side methotrexate and hydroxychlorquin. I’m a little worried about the side effects, I’m already on anti sickness for constant nausea, I suffer migraines before and these meds have only made them worse and I also suffer with hair loss. I also have Hashimoto’s which affects my hair also. My methotrexate is controlling 60% of my symptoms but I’m still get flares and nodules in my hands, shoulder and toe joints. I’ve read polar opposite things about this medication and I’m worried, reviews are pretty much split down the middle with some saying it’s the worst thing they’ve had and others have called it a game changer. My consultant also wants to start on TNF blockers which I’m wary of.

I’m worried about causing more problems now than it’s solving. The pain that I’m suffering with is bearable… but obviously I know we don’t want it to get worse. I’m also worried about the long term effects on my internal organs starting from a relatively youngish age

I want to live a relatively normal life, I work with children also so is dampening my immune system with three immune suppressants going to put me at a much higher risk. Consultant has said I am eligible for biologics but wants to try this first. I feel lost.

Feel like the pain I’m in is potentially better than living with some of these side effects. I’ve had enough of feeling sick constantly, stomach issues and pain from meds. I love my job and I’m trying to earn my degree so more “sick leave” isn’t the answer.

Yet I’m just being given more tablets, more injections. Does this sound right? I’m interested to hear your thoughts, encounters with this drug etc.

Eeyore

It does seem to be the system - try this, OK take this to deal with the side effects, now try this as well. Not working, we'll add this to the mix…… I am NOT a fan of taking yet more drugs to counteract side effects of other drugs. Every drug has some sort of side effect but I prefer to keep the amount of poison going into my body to a lower level!

I am retired and last year suddenly developed R.A. I tolerate a low (15mg) dose of Methotrexate but any higher and a) there is no change to my symptoms and b) I get awful nausea all week. So I refuse to take more than 15mg. I was then given Hydroxychloroquine which exacerbated my tinnitus and also gave me even worse nausea so I am refusing to take that….the tinnitus has not yet receded back to it's "normal" level, I hope it will in time. I suffer considerable pain, constant flares and am pretty miserable but I have to wait (and wait, and wait) for my next (telephone) consultation with a rheumatoid nurse to see what action they suggest next. It would be lovely to see a consultant but there's more chance of me flying to the moon.

It's a toss-up between bearing with one type of pain or another, isn't it? Personally, I cannot tolerate constant nausea but we're all different. Good luck with your ongoing meds!

nanny2507

I have just started on leflunomide. I have been on so many arthritis meds and not one of them changed/stopped or eased my pain! I have been off all meds for 2 years and I've felt so good and even had less flares. I have agreed to give leflunomide 3 months and if I feel rubbish I will stop it. So far 4 days in, I feel mildly sick and I'm having minor headaches

annabanana

hi @Hairdresserwithra , I'm so sorry to hear that you're going through this. My hair was also very badly affected by starting MTX but almost completely resolved itself when I started taking Biotin and Folic Acid every day, have you already tried this?

Obviously each rheumatologist is different but I have had similar happen to me - my rheumatologist also just keeps on adding new medications in with the old ones, hoping to find some secret combination that cures my RA, but like you I haven't had my symptoms fully resolved. The good news is that your consultant is considering biologics, I haven't personally been on biologics but I know that they've been revolutionary for most people that take it (hoping the same happens for you!)

I'm currently on a mix of methotrexate, sulfasalazine and hydroxychloroquine and I completely understand how the side effects seem so much worse than just suffering with the pain but it is better to trust your rheumatologist whilst also advocating for yourself. Since most medications don't start to work until months of taking them consistently we can't always notice the difference that they are making, other than the negatives.

I really hope things improve for you.