MTX hair loss despite folic acid 6 days a week

CuriousSquirrel

I know there are a few topics on this but most that I've read have people suggesting upping the dose of folic acid to combat hair loss on methotrexate. I am taking 5mg folic acid 6X a week, which I think is more than most people take. (Is it TOO much? It's what I was told to do but most people seem to take smaller doses or less frequently)

I've been on 10mg mtx injections since November and in the last month or so have noticed my hair coming out more than it used to. Today I washed my hair and it's been coming out at quite an alarming rate.

I actually missed my dose of mtx last week. I should have had a dose exactly one week ago but my medical practice messed everything up so I have been without it. I'm hoping to pick it up tomorrow but not sure whether to continue with it as it doesn't seem to have been helping despite causing a lot of fatigue and now hair loss. I have just started Amgevita so I was hoping to come off it eventually anyway!

I take an omega 3 supplement daily and a general multivitamin in addition to the prescribed folic acid. Is there anything else I could be doing? I know it's not the worst thing that could happen but it is a little depressing to have my hair falling out, especially as I'm enjoying having it long for the first time in many years!

jamieA

https://community.versusarthritis.org/discussion/57819/mtx-hair-loss-despite-folic-acid-6-days-a-week

Hi @CuriousSquirrel

I'm on MTX and Amgevita and I was put on to vitamin D3 at the start of the year. It wasn't anything to do with hair loss - I don't have much - but it showed up in my blood tests that I was low in D3 - about half what should be the minimal level. One of the symptoms listed for D3 deficiency is hair loss. Do you take a proton pump inhibitor such as Omeprazole ? I've read a couple of studies that show that PPIs can cause a reduction in vitamin D.

stickywicket

@jamieA makes a good point about Vit D. I think the NHS recómmends we should all take a supplement in autumn and winter as we don't get enough sun in UK. https://www.nhs.uk/conditions/vitamins-and-minerals/vitamin-d/

However, it also says that most people lost 50-100 hairs a day, often without noticing it. Maybe you're noticing it more as you're growing your hair. It's normal to lose hair. https://www.nhs.uk/conditions/hair-loss/

Folic acid does mitigate against side effects of meth. My understanding is that it also diminishes a little the good effects of it so we're better off if we can manage on less folic acid.

CuriousSquirrel

https://community.versusarthritis.org/discussion/comment/696020#Comment_696020

Thanks for your reply. I had my vitamin D tested fairly recently and it was fine. I take a daily multivitamin with 100% of the RDA of vitamin D and I don't take PPIs.

I also work outdoors and most of my hobbies are outdoors so I'm rarely inside! So I don't think vitamin D deficiency is to blame in this case but it's definitely something I'll keep an eye on.

CuriousSquirrel

https://community.versusarthritis.org/discussion/comment/696027#Comment_696027

Thanks for your reply @stickywicket . I hadn't been told that folic acid can diminish the effects of mtx. Might actually try taking less folic acid as mtx has been useless for me so far!

My hair is definitely falling out at a much faster rate than 50-100 a day. When I tie it back it feels so thin that I'm instinctively searching around to try and find the rest of it. Thankfully it was very thick to start with so most people probably don't notice but I definitely do, and at this rate it'll be gone in a few months. I lost a lot of hair due to another illness many years ago so I remember quite a lot of the research I did then. It wasn't to do with medication though, and the solution I used that time won't work now!

stickywicket

Please don't change any prescribed meds as a result of anything that I've written. It's essential we consult our medics on these things. I could be wrong. (I often am😁) They are the ones who have put in years of learning.

I understand that, if you've had hair problems in the past, you will be anxious about yours. But there are so many things that can affect hair and hair quality. Ill-health itself for a start.

If your regular blood tests show that your inflammatory markers are still high then your rheumatologist might want to tweak your meds. But, if it's simply pain you are experiencing, your GP can deal with it.

CuriousSquirrel

https://community.versusarthritis.org/discussion/comment/696057#Comment_696057

I think my chances of getting through to anyone to ask about folic acid this month are slim! Also the rheumatology nurses are always very good at brushing aside side effects as something else, even when they're very well known ones (like this!)

All my blood tests in the past have been normal, though I haven't had one for a while now I have switched to 3-monthly instead of monthly. Also getting through to a GP is hopeless here. And they have never been able to do anything for pain in the past! I think I may be very unlucky living here. I have no trust in any of these services that everyone else seems to have such faith in. They've let me down and lied to me so many times.

stickywicket

It's good that you're on 3-monthly bloods as that means things are stable. I've been on them for yonks apart from the odd slight blip when I've been asked to repeat one.

The trouble with side-effects is that so many are common to virtually all meds. Read any leaflet. i think it's the really important ones we need to take note of.

NHS does say we should be careful about taking supplements when we're on meth. Especially, they say, don't take any that include folic acid (folate) if you're already taking it. https://www.nhs.uk/medicines/methotrexate/

As for pain, I don't expect to be without it. You pharmacist could advise on what would be appropriate given any other prescribed meds or supplements you're taking.

CuriousSquirrel

https://community.versusarthritis.org/discussion/comment/696129#Comment_696129

I checked with my rheumatologist, consultant, rheumatology nurse and the drug counsellor who showed me how to use methotrexate and they all said it was OK to take these supplements, which I have been taking for years with no hair loss. If those four "experts" were all wrong, I really don't know who to trust. This is one of the few pieces of information that's been consistent between different people I've spoken to in the NHS. Many times I have been given conflicting information, but they all agreed these supplements were OK.

I don't understand this reluctance to believe that methotrexate could cause any side effects. This was one of my main fears starting the drug - that nobody would take the side effects seriously - and here it is happening yet again.

I was gaslit and dismissed by my rheumatologist too, when I had a period that lasted five weeks after upping my mtx dose. She said it was just a coincidence. I lowered the dose, it stopped immediately. Upped the dose again, it started again. Lowered the dose again, it stopped again. Talk about ignoring the obvious. I'm not that stupid.

Many, many people have hair loss from methotrexate, many people stop taking it because of it, and many can't tolerate it at all. I don't appreciate being treated like an idiot, this is the last time I'll post here.

jamieA

Hi @CuriousSquirrel

I'm sorry you feel that way - I don't think anyone here is trying to treat you like an idiot. Also I think many here on MTX do suffer side effects. In my case I continue to suffer quite debilitating episodes of fatigue either one day or two days after my MTX day. It quite literally is like turning off a switch - I can be mid dog walk and have to stop and rest and only happens on those days. When I was on 20mgs MTX I suffered episodes of loss of balance. I also took a severe episode of atrial fibrillation and tachycardia requiring a blue light ambulance journey - I'd never had such a thing in my life before. I then suffered another hospitalisation 4 months later with tachycardia. At that point my MTX was reduced to 10mgs. I've not suffered an episode since - 9 months and counting. The medics I deal with are quite sceptical of cause and effect but trawling the internet for medical papers throws up a host of papers which document instances of this. I'd suggest you might try this for your symptoms and then talk to your medics.

One point I'd make regarding moving to Amgevita. When I did so I thought that since my sulfasalazine intake and then sulfasalazine and MTX intake hadn't worked then when Amgevita did I'd give up the other two. The rheumatologist said it didn't work like that and the presumption is it's the concoction of the three drugs that's working for me.

In the 20 months since this happened to me I've realised what a solitary disease this can be - made much worse by covid. Even with best intentions my close family and friends don't always understand what's going on. I can't do things I used to - to socialise, get around, be active and enjoy life the way it was before. Many of the medics I've seen have been contradictory or (in the case of my first rheumatologist and some of my GPs and staff) arrogant and unhelpful. It's felt like pushing water uphill at times. At least here you can interact with and get advice from others in a similar situation. That advice may not always be pertinent but at least it's offered in good faith.

stickywicket

I seem to have offended you and, if that's the case, I'm genuinely sorry. If you find the forums helpful please don't cease posting. I will undertake not to answer any more of your posts.

Just for the benefit of others reading here, I'm sure your medics were right. (Your first paragraph.) The NHS website is necessarily general whereas your people know your medical history and can be specific in their advice.

TUL50

Hair loss affects everyone differently and you are clearly distressed about it. What's even more distressing is the experts are all being vague about it being a side effect.

This time of year, you can expect to see more hair loss anyway, because it's hot, so our heads drop some weight in the form of hairs, so it's a natural cycle to see more than a few hairs clogging up your plug hole. However, if you are losing vast swathes of hair, and you have bald patches, that issue needs to be addressed.

You don't want more drugs, you just want someone to be honest with you about why the great moult is happening and what can be done to prevent further loss. I hope you are able to get those answers.

Personally, I went through chemo two years ago and lost all my hair. Everything. Eyelashes and brows and all - BEST.TIME.EVER! I loved being a baldy, because I wasn't plagued by the endless bad hair days I have now and if it starts falling out in chunks because I'm on MTX and folic acid, I will be reaching for the clippers and resolving the issue myself.