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 .

@Crunchymum
No need apologies crunchymum ☺
Yes it's always good to have a great consultant who is lovely and understanding so pleased for you
My consultant also is very good and my S nurse is to

It really does make a difference as you do feel listened to

Good luck to you and hopefully you stay well xx

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.

@Justonedayatatime11
I am sorry hear that you are having a bad time at the moment

In my experience lefflunomide as been ok for me apart from a little nausea around 15 mins after taken it and a bit of upset stomach which wasn't much either
Blood pressure good all blood tests good it's the loss of hair which as been my main side effect which is why I stopped taking it
I have never heard of a charcoal washout will have a look at that
Good luck and i hope all works out for you xx

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.

Hi

Thanks for explaining about the charcoal.washout I was going Google it later on
I do have treatment for my RA Called rituxumab and have this around once a year it all depends on how I'm doing
Lef was prescribed to me as last infusion didn't work as well
For now I'm feeling and doing quite well aa rituxumab still in my system when things start to flare up again I will recieve the rituxumab and hopefully this time works better
I hope you are staying well to xx

@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.

Thanks @Georgieporgie29 for your advice about seeing a dermatologist that sounds promising
Everything will be discussed tomorrow
Seems you have tried lots of medication and would like to wish you all the best with the Jak inhibitor ( I'm unaware of this one) tho know all your other tried treatments

And hopefully no more hair loss for you to
Xx

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

Hi
Just to give an update after speaking with S nurse
I explained everything and she as recommended I carry on with the lef and take one every other day for now to see if it calms things down.
So I'm taking the advice off her and many of the PPs here and also I have ordered Watermans s shampoo which a PP as kindly recommended to me

Xx