To stop my RA treatment because of hair loss

[Emmadaily]

Posting here for traffic
I have decided today to stop my treatment for RA called Leflunomode as my hair is visibly thinning
I will still have my infusions when needed
which are normally around 12 to 18 months max
My question is
Has anyone here stopped medication because of hair loss and how long before it stopped falling out and then growing back again properly
Thanks for reading .

I wouldn't risk the RA flaring up again. Would you be allowed to just dip in and out?

Hi toddlerteaplease
Thanks for replying

I'm ringing my specialist Tuesday morning to explain and I will suggest this
Didn't think of this idea so thanks for this .

@Emmadaily the problem with RA is that treatments nearly all come with secondary effects. Patients get to "choose " whether RA or the secondary effects are worse. Unfortunately only you know whether you can better manage the pain or the hair loss. Different patients make different choices.

Hi yes that's right and I'm going have this break from the Lef to see how things go

Have no side effects with Ritixumab just a bit of extra tiredness whilst waiting for it to kick in
This drug is an add on after my last infusion to help me out but my hair as now gone visibly thinner and feel quite distressed about this
Yes it's all choices x

I have RA. Mtx made my hair fall out horribly and it got me so down. It also didn’t control the RA well and I got a massive hangover from taking it. I’m on my second biologic and two years in my hair looks so much better.

Sympathies- it’s a shit side effect.

It’s worth phoning your specialist nurse and asking for an alternative. I couldn’t tolerate luflonomide. I’m on biological treatments - gave me my life back. Best of luck

Try and look into natural treatments

Thank you both for replying
So fellow sufferers experienced these side effects so sympathies to you both and any other sufferers out there
I do respond ever so well to the Rituxumab but this last time after 4 months I was still suffering hence the lef being added

I'm now for the moment feeling so much better but the hair loss is really getting me down so I'm going speak Tuesday with my nurse and will go for there
Good to know your hair came back nice thanks for telling me and great to hear you got your life back xx
This post for both of you that have responded to my thread xx

Yes that's something I will be doing

Thankyou x

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?

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.

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.

@UncharteredWaters
I do have regular blood tests as part of the monitoring

Tho not for what you say
so yes that's really worth asking my S nurse on Tuesday to see if she will order them for me thanks for your suggestion x

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.

@LyrasOxford
Yes I will do that thankyou x
I'm going write down everything you have all suggested for when i chat to my S Nurse
Thanks everyone I feel a bit better now and I'm so grateful for all suggestions
Just hope for now my hair loss slows down and things start to improve xx

@Wideskye
Thanks for your recommendation for watermans shampoo will be googling that and also your suggestions of different meds and your kind words xx

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'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!)

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 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

Could you use topical minoxidil for the hair thinning ?

Must be used daily

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.

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!

Hi pps
Thanks for responding to my thread lots of lovely people here

I'm.sorry to hear that you have all suffered terrible side effects and I wish you all the best to stay well
Some very good suggestions here and will be looking into everything
I had MTX years ago and sulphur salazine both times were taken off them after bloods showed elevated liver counts
So was suggested Rituxumab which has been really good( no problems with blood results no hair loss) apart from the last infusions didnt work so well so was suggested i try the lef to go alongside the Rit then hair started thinning falling out terrible
So obviously i will speak with my S nurse and see if I can just have my infusions when need them as before tho still willing to try another Dmard once things settle down again
Take care everyone you have all be so understanding

Thankyou xx

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 😂

‐--‐---------

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]