Methotrexate use and side effects

[Specialised]

Hi All,

I would be interested to hear members experience with methotrexate.

I have been on a weekly dose of 20 mg for approx the last 6 months, along with prednisone (currently at 11 mg tapering 1 mg every 3 weeks). Up until the last month I had experienced no side effects of the methotrexate, however recently I have noticed my hair shedding more than usual. This was concerning me, despite the fact that my family said they couldn’t notice the loss.

My dose was dropped to 15mg but I feel it didn’t make much difference. Perhaps I was becoming paranoid!!!

I have an appointment in a few days with my doctor. She has advised me to stop the methotrexate. I know she is keen to wean the prednisone and will probably suggest another DMAID. My doctor also holds a Bachelor of Pharmacy so I feel she is knowledgeable on the drugs and their actions.

I would be interested in any thoughts and experiences that people have around the use of DMAID’s. I am thinking I’d like to just stick to prednisone and see if that is sufficient. I struggled initially to reduce prednisone but have been travelling ok now. Slow is best for me I feel.

I welcome your thoughts. I am about to head to work but will read any comments tonight.

Thank you in advance,

Specialised.

[Cfmad298601]

are you taking folic acid on the days you don’t take MTX? It’s usually at 5mg for the other 6 days. I experienced hair shedding for a while but it wasn’t clear whether the pred (as it can cause this after a few months) or the MTX. I was originally on a lower dose folic, that was increased and things improved after a while.

[Specialised in reply to Cfmad298601]

Yes I am on folic acid 5mg. It has only been in the last month or so that I’ve noticed an increase in shedding. I did wonder if I held my nerve whether it would improve.

I would really just like to deal with one drug (Pred) rather than 2. I will see what my doctor says in a few days time.

Thanks for replying.

[Noni71]

My rheumatologist tried me on Tocilizumab and Methotrexate alongside Prednisolone as I developed Large Vessel Vasculitis as well as GCA. The Tocilizumab worked really well but here in UK you can only have it funded for a year. Methotrexate was not successful as it messed with my liver function so I had to stop taking it. Now my year is up, I’ve started with Leflunomide. Early days but something just doesn’t feel right. Can’t quite pinpoint what it is but we’ll see what happens with my blood test results. Hope you get sorted.

[Specialised in reply to Noni71]

Thanks for sharing your experience. It adds to to your worry when everything is so uncertain and these drugs are powerful and not without possible unwanted side effects.😣

[Oxfordboy2]

My journey with methotrexate has been similar to your own.I must point out that this is the only med I am on other than folic.Like you the first 6 months were fine before the side effects kicked in.As you are asking about hair loss and thinning yes that has happened to me and the texture is much finer.I am male so to lose my under arm,arm and leg hair just doesn’t feel right.I was offered another DMARD but upon research they nearly all have the same side effects so I decided to stay with the devil I know.I started on 20mg and reduced to 15mg and it didn’t make any difference as still plenty of hair in shower tray.Good luck and hope you find something better.

[PMRpro Ambassador in reply to Oxfordboy2]

I'm female but I have lost underarm and other body hair on pred alone!! Obviously I find it quite acceptable - but it isn't only MTX that does it!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

No it isn’t only MTX

I was on Pred only -and even after 8 years off it, underarm hasn’t returned -and not as much on legs. Not that I’m complaining.. 😊

[PMRpro Ambassador in reply to DorsetLady]

Me neither - though I note it is returning on my shins at lower pred. It needn't have bothered ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

😊

[Specialised in reply to Oxfordboy2]

Thanks for your reply. My brief reading about other DMAIDS suggests the same side effects. I am going to ask my rheumatologist what the lowest effective dose of methotrexate that can be considered. I have read of 7.5mg being prescribed. I’m not sure whether the hair issues would lessen on that dose.

I am willing to try my chances on just prednisone alone. To be honest I don’t really know if methotrexate has done anything. Maybe it has maybe it hasn’t. I guess I will find out. I’m not sure how my doctor will feel though.😳 I have a feeling she will want to give me something else.

This illness is a real pain in so many ways.

[PMRpro Ambassador]

Now you have posted a list of Related Posts has come up - all about MTX. My hair loss with MTX started immediately after the first dose and was clumps of several hairs together. SInce yours is only obvious now I'm wondering when you were diagnosed and when started on MTX? If you were diagnosed AND started on MTX at the same sort of time, it could be the illness itself that is causing the hair loss. Pred can also increase hair loss for some. Our health is often reflected in our hair. And is that 1x5mg folic acid? Some people need up to 6x 5mg, taken every day they aren't taking MTX.

You may feel the MTX isn't doing much - others have thought the same until they stopped it!!

[Specialised in reply to PMRpro]

I was started on methotrexate 4 months after diagnosis and have been taking 5mg daily of folic acid for 6/7 days. I did wonder if the illness combined with both pred and methotrexate was contributing to hair loss.

I am holding my breath to see whether I experience an increase in pain and inflammation since stopping. It has only been a day so far.🙏🙏

[PMRpro Ambassador in reply to Specialised]

The MTX effect can last a couple of months - may take a while to feel the difference but everyone is different.

I lose more hair in the spring and autumn - are you sure it isn't that!!!

[PMRCanada in reply to Specialised]

I stopped MTX for 3 weeks once due to infection antibiotics and experienced a return of painful symptoms. So I know it was doing something and helped me slowly lower my pred dose.

I’m currently experiencing ongoing adrenal insufficiency symptoms since starting a new job a month ago (additional stress), and have had to do two pred bursts and hope to settle at 6mg pred (5.5mg didn’t do the trick). If I have to up my ongoing pred dose I may just stop the MTX altogether as I was at 9mg pred when I started it 2.5 years ago. I don’t foresee tapering pred anytime soon so why continue with MTX as a steroid sparer (unless it’s helping with another undiagnosed inflammatory disease).

[Specialised in reply to PMRCanada]

Thanks for your response. I too have wondered whether there is a strong benefit to adding methotrexate into the mix in terms of getting off pred any quicker. It’s use/benefit in the treatment of RA seems to be fairly certain, but in the treatment of PMR not so strong.

It is not always a simple equation when considering taking these powerful drugs.

[PMRpro Ambassador in reply to Specialised]

There can be - a small group of patients do do brilliantly on it and you have to try to find out if you are one. Otherwise - no guarantees and at best a minimal effect.

[Specialised in reply to PMRpro]

👌

[PMRrunner]

I've been on methotrexate for nearly 4 years and can't tolerate 20mg even with taking folic acid 6 days a week. Even at my current dose of 10 mg I get periods where I lose more hair than normal.

Also I still need to taper the pred dose very slowly. My last taper from 2.5mg to 2mg has taken nearly 3 months. I'll stay at 2mg for at least a month before starting another very slow taper to 1.5mg.

Thankfully my rheumatologist is happy for me to taper very slowly or stay at this low dose permanently if that's what is required.

[Specialised in reply to PMRrunner]

Thanks for your response. I will ask my doctor about trying a lower dose.

I feel she will want me on another DMARD, but they all can have unpleasant side effects. 😵‍💫