To stop my RA treatment because of hair loss

I wouldn't stop the leuflutomide just for the hairless, and I am currently experiencing it.
I have cut my hair into a short bob and bleached it...the bleach makes it look much thicker and I use volume powder like its going out of fashion.

Methotrexate was HELL for the poster above, refuse to take anymore. I was on it for 5 years and it was just awful. Then I spoke to a friend of mine who was diagnosed long after me who was on and off Methotrexate in a few months including being put on injection. I asked how on earth did she get off it? She just said she refused to take it and would complain of she wasn't given another option. So I went in with a similar strategy and came out with a new DMARD (I can't remember which)

Anything that stops the RA is best.

I had to go off all treatment for a year as I was found to have TB so couldn't have any while it was being treated....I was an absolute mess by the end.

Keep up with the meds so you don't loose function. ... or ask for a different DMARD, I won't recommend Methotrexate lol

@Emmadaily I just wanted to add on to your post to say that you can be asked to be referred to a dermatologist regarding the hair loss, they can prescribe certain things that may help.

I would hang on until Tuesday and speak to the nurse and see if you can change to a different medication. Echoing others, you may think that you’re managing ok but you could be causing irreversible damage to your joints.

As an aside, I have never taken leflunomide but do take Sulfasalzine. Have failed hydroxychloroquine, methotrexate, humira, enbrel and am now on a jak inhibitor.

I have suffered from hair loss, however this was put down to being alopecia as you know once you get one auto immune disease the rest usually follow. Have had numerous treatments from the dermatology dept for this.

The charcoal washout is needed if they need to get the leflunomide out of your system in a hurry - as it can stay in your system for a long time when you stop taking it. I do not know anyone who has ever needed this.

I have had no side effects from leflunomide other than hair loss either. The danger for you is that untreated RA leads to permanent deterioration of the joints eg osteoarthritis which can then only.be fixed with surgery. My consultant basically told me that the alternative to taking an effective medication was multiple joint replacements. But if something does not work due to the side effects, trying an alternative was better than stopping altogether.

I hope you don't mind me jumping on your thread OP. Just a question. Leflunomide is where my consultant is pushing me to go, after mtx stopped working. I'm very very reluctant to take the Leflunomide due to the side effects, in particular the potential need for a charcoal washout. Has anyone ever had this? I've now had no DMARDs for 6ish months and my joints have deteriorated so rapidly that even a mega dose of steroids recently hasn't worked its normal miracle.

Edited as although you replied to me, I think you were actually posting to the OP (and rightly so. Sorry to derail your thread @Emmadaily )

So ignore me 😂

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Bloods are fine, arthritis is well controlled so they won't consider me as "failing" MTX. I need to fail two DMARD's (have already failed Sulfasalazine - this showed up in a blood test)

I've already reduced from 25mg to 15mg and I inject.

Apparently me feeling like utter shit for two days a week isn't enough to 'fail me'

[Big London hospital and my consultant - who I really like - has assured me the moment I flare / officially fail MTX I'll be moved to a biological]

I am currently on sulfasalazine and leflunomide. I have had hair thinning which resolved when I reduced the dosage of leflunomide, but unfortunately I have also had a corresponding flare up. It is hard to know what to do for the best - methotrexate worked for a while but then I had increased side effects and had to come off it.

If there are other options to try, it may be worth considering as you can always go back if it turns out to be the better option!

Can you reduce the dose rather than come off it altogether? A lot of the biologics work best in conjunction with mtx. I had horrible mtx side effects (as in WBC too low as well) and I was reduced to half the dose and a biologic, it's so much better.

Could you use topical minoxidil for the hair thinning ?

Must be used daily

I have RA also and my hair fell out also, had huge bald patches. I ended up having steroid injections into the scalp and it did grow back. I couldn't have stopped medications as I am so unwell without them. At the time I was on Sulfasalazine and methotrexate orally.

Now I'm on injection methotrexate and biological Amgevita injections. No further hairless and after the 6 month course of steroid injections into scalp it's grown back in. My only saving grace was that it was underneath my hair behind my ears and I have really long thick hair so I could cover it. But it's back now, and I just keep an eye on it

I wouldn’t stop my RA treatment because I couldn’t even dress myself or wash my own hair before I started it. Is you hair loss just cyclical or has it been happening over months? I use caffeine shampoo which I found helpful but my hair thinning was just now and again, it’s quite thick at the moment. I hope you find a solution.

I'll assume you mean natural treatments for hair loss and not natural treatments for RA?

RA patients need specialist treatment to protect their joints from further damage. There is no "natural treatment" for the condition.

(I have a different type of autoimmune arthritis and I'm 6 years on Methotrexate but having horrible side effects so desperate to come off it!)

It's so horrible isn't it, people I think don't realise what toxic medication so many have to take for chronic conditions

I don't have RA but have Myasthenia, and was prescribed steroids first and they were awful, I gained a huge amount of weight /water retention and became horribly unwell - thankfully that meant I came off them.

I'm now on mycophenolate and it has caused a lot of hair loss. Luckily I had thick hair to begin with but there are visible balding patches and my hair is a horrible texture.

I'm desperate to come off it, not so much because of that but because I think it generally makes me feel quite unwell and isn't really belong. Last time I spoke my neurologist urged me to stay on it but I am going to raise the question again.

It's not an easy balance and I don't think it's unreasonable to be pondering whether the side effects are worth the medical benefits. I certainly don't feel entirely sure I want to stay on these meds

I found, initally (with methotrexate) that I experienced hair loss. It settled down and my hair grew back. Now if I take a break for any reason it thins!
I take a biological, hydroxychloroquine and methotrexate.
Our meds don't cure RA, they make us function. Each one has side effects.
Many use watermans shampoo.
I hope you find a med that suits you. Take care.

Would it be worth asking your specialist nurse for an alternative DMARD? I don't know what you've already tried but I take mtx alongside my biologic. I don't experience hair loss with mtx but other side effects. Could sulfasalazine also be an option? Hope you can work it out, hair loss is horrible.

There may be treatments that suit you better, so it's worth asking. RA is a nasty thing (I'm sure you don't need me to tell you that) and you don't want to risk it running amok - it can do a lot of damage in a short period of time.

Follow your consultant's advice.

Worth having a chat about the side effects and maybe checking b12 and ferritin before announcing you are stopping in case there are some other options?