Methotrexate side affects : Hi Methotrexate has been... - NRAS

NRAS
27,609 members31,626 posts

Methotrexate side affects

cpr02
cpr02

Hi

Methotrexate has been brilliant in taking away my pain and am lucky to have little pain

However does anyone experience the following

Appetite change- not so much a loss of appetite but I used to love cups of tea now I can't drink them etc is this normal ! I really miss having a cup of tea!

Hair thinning - I used to have really really thick hair now its st the point where its very thin I'm getting paranoid I'm going to loose more and am scared to straighten it

If anyone has experienced this was there anything you were able to do that helped this?

Thanks! X

60 Replies
oldestnewest

This might help.

versusarthritis.org/about-a...

I don't get any side effects, but there are several members who do have hair loss. They might respond to your post if they have any suggestions. Do you take Folic Acid? If so, how often. I take one every day except fr MTX day.

cpr02
cpr02
in reply to poemsgalore1

Hi yes I do and same as you every day apart from methotrexate day ! Xx

Maramara
Maramara
in reply to cpr02

Hi,how much mtx do u take? I only take 1folic acid 2days after the mtx !

Hi cpr02. I'm on Methotrexate too (injections) but my only change in appetite was due to the Prednisalone I was on also - I wanted to eat anything whether it moved or not. 😁 That has changed somewhat since reducing them and I don't eat so much now. I have had thin hair for several years now (I used to have really nice hair and had lots of compliments about it) but I think mine started thinning with early menopause (42 ish - I'm now nearly 71) when I really lost so much it was embarrassing and I was so upset. It still is very thin but I am used to it now. Were you given Folic Acid to take - my Rheumy prescribed them for me with the MTX as I told him my fears about losing more hair and apparently, this help to prevent that.

cpr02
cpr02
in reply to springcross

Hi yes I take it every day apart from methotrexate day .... now thinking I would be bald if it wasn't prescribed 😂😂🤔xx

springcross
springcross
in reply to cpr02

How long have you been on it?

cpr02
cpr02
in reply to springcross

Since October last year xx

Gailrossi
Gailrossi
in reply to cpr02

I’m the same as you been on methotrexate since last October. Iv been taking 6 methotrexate once a week, and folic acid once a week. But went to see my rheumy last week and she has put me up to 9 methotrexate a week, and due to hair loss she has now put me on folic acid 6 days a week. It really scares me as I’m taking even more now x

I got some hair loss when I first started methotrexate. It seemed to settle down after a while . I take a biotin supplement it’s seems to help. I haven’t had any problems with taste but I do know others have they may comment

As to taste - can't explain it, no doubt someone, somewhere can (!), but it was discussed just a few days ago in a post by Buckybri and a few of us had a gripe. I can really empathise with the tea situation. I very quickly learned not to have my MTX before/during/straight after dinner as my taste changed immediately and my after dinner cuppa was ruined. however, it only lasted about 36 hours after taking the tablets each week.

Now on injections (missed three, debated Sulfasalazine but decided to stick with MTX for now, watch this space!) and whilst my taste isn't so dramatically affected after injecting, it seems to be more permenantly altered if that makes any sense? Some days I get a 'good' cuppa, other days they go down the sink, I try again . . . and give up. I'd love to know why . . . or perhaps, second thought, I'd rather not!

My hair loss was more marked on oral MTX but better on injections.

Hope you get a good cup of tea soon, life would be hard without one!

cpr02
cpr02
in reply to jbzm

I know! Out of everything that's happened this is what I'm struggling most with!! 😂😂😂 drinking it makes me feel I'll but most of my fluids came from tea so I'm struggling!! Xx

I too was tea lover, the first cuppa in the morning ....bliss ! Now it makes me queasy , since mtx , no idea why .

cpr02
cpr02
in reply to Thingybob

Thank you for replying glad I'm not the only one! Genuinely not sure why I dislike it 😥🤔🙈 xx

Odd, I’m the opposite and no longer drink instant coffee. In fact, I take mtx with a cup of tea as I find mtx with water makes me nauseous.

I have had a notable change in my taste since starting methotrexate. I can't tolerate a number of food and coffee tastes metallic now. I loved a coffee.

cpr02
cpr02
in reply to bunnycaramel

Thank you for taking the time to reply its really strange as I.liked tea so much! X

Mtx can have all allsorts of side-effects ..... everybody will have a different experience of this drug ........any adverse reactions in the beginning usually settles down in the first few months and many people here have been on the drug for many years with great success.

Have a Word with your rheumatology nurse.... she will have heard almost every side-effect Mtx can produce.... and will be able to advise you how to deal with them.

I hope you’re one of the lucky ones & that your nurse can reassure you.......I had seven very successful years on methotrexate.....until I went on to a Biologic.....& settled on that well too.

I'm on 15mg MTX injections since October and empathise with the tea. Thought it was just me. I went off my normal Earl Grey and onto ginger tea. Now back on the tea so assume I had a temporary blip. I have read that you do need to be a little cautious about caffine intake with MTX so perhaps its our bodies way of self regulating. My love of tea has obviously now over ridden the self preservation part and gone for total self destruct - the kettle is always on and the tea on constant alert. Hope your tea needs are fully met soon.

springcross
springcross
in reply to RosieA

My Rheumy nurse told me no caffeine but I still do (never been a big drinker of it in either tea or coffee). I suppose it depends what dosage you are on.

Only get mouth ulcers but how long did it take to fully work

cpr02
cpr02
in reply to Seanstar

Hi everyone is different I'm sure but for me it was around 6 weeks I still get the odd aches and pains but nothing like I used to ! Xx

Yes I to have gone of tea I drink the fruit tea s now also my hair as gone really fine I have been on methotrexate injection s for 12 months now but it’s only been like this for the last 9 months I started benepali 3 months ago so I don’t no if it’s that I also get really bad upset stomach most days my appetite as gone I have to see the consultant next week as I have not seen him since June and when you start the biolic s I should of see him before now hope your all ok keep positive x

Good luck with your consultant appointment I'm drinking the fruit teas too x

My rheumy put me on folic acid for my thinning hair and I want to say it helped. Increased my dosage of folic acid to 3 pills per day.

cpr02
cpr02
in reply to Unique12

I'm already on folic acid didn't realise it could be increased though maybe they could do that for me ! X

Hi I can concur with you... I was on MTX for over 2 years I used the tablets and then the injections.

I experienced the same too: I used to love tea!! I have a cupboard full of all sorts of various teas. I cannot have anything strong anymore sadly, English breakfast which used to be my favourite is a no no now. I only have very weak tea I tried this tea when I was on holiday in Mauritius: coconut vanilla tea. That’s the only think I drink nowadays!!

Yes to the hair loss too... I had a head full of very strong thick hair, I only have about 1/3 of it left now :( I have been taking biotin for this which seems to help. I take folic acid too but I’m not really sure it works!

Good luck x

cpr02
cpr02
in reply to Riddlejk

The coconut tea sounds lovely can you buy it in the uk ? I'm experimenting with fruit teas but it's not the same !! Is biotin a supplement? X

Yes to both. My hair is thinning but apparently that does stop.

I used to love coffee and coke but I drink them very rarely nowadays. I put it down to mtx being tough on the liver and my body saying it doesn’t want the additional toxins. Tbh I’m quite relieved, I’ve saved a fortune but I’m sure Costa shares have taken a tumble!!

Yes I experienced hair loss also mouth ulcers and UTIs which I had never suffered from prior to taking it . I only take MTX once a month now everything is great no return of pain and no nasty side effects but I know if I stopped taking it I would be back to where I could hardly walk and I never want to return there again 😞😞 speak time your rheumatologist about reducing x

Hope everything settles down for you soon xx😊🙏🙏

I suffered hair loss too and now take a supplement called Biotin that I buy through Amazon (years supply about £16). Took a couple of months to work, but my hair loss is back to normal and my hair is slowly growing back. I also use a fab shampoo/conditioner/ treatment hair mousse called Nioxin - thickens and encourages new growth. Can buy a set on the internet for £19 (4-6 weeks).

I suggest that you check out the biotin with your rheumatologist just to be on the safe side ...but it’s only a supplement, not classed as medicine. Good luck x

cpr02
cpr02
in reply to CagneysMum

That's great thank you will try both of them x

I have been taking Methotrexate for more than a year and have had significant change in appetite. Foods that I have always loved now taste unpleasant. I can be in a supermarket where I can choose anything and I just don’t fancy anything. I always have an unpleasant metallic taste in my mouth. I have also become very sensitive to smells 😬

Carolsos
Carolsos
in reply to Smithycat

I have the horrible metallic taste in my mouth too. And when I take my mtx tablets at the weekend I go off cups off tea. I am a tea addict in the week! I have been taking mtx for 8 years. Take care

I have been given Mte but the side effects you are having has made me think I’d rather not take it. There is a bit of a problem with kidneys as my brother had to have a transplant so who knows whether it is a good thing for me. I have Seronegative Rheumatoid Arthritis and at 80 yrs I think maybe I shouldn’t bother. Maybe put up with the pain as long as I can

cpr02
cpr02
in reply to Briangilbert

Please don't not take it on my account! It really has helped my pain and there are always ways around side effects etc although I don't like the side effects life before being put on it was awful for me now I can go out running which I love work full time etc etc your rheumatologist should be able to help if you explain what your concerned about though ! Xx

J1707
J1707
in reply to Briangilbert

I’ve been taking methotrexate for nearly 4 years . No problems. I want to participate in life not just exist this medication allows me to do this

Briangilbert
Briangilbert
in reply to J1707

I am worried that my kidneys may be affected as not too good. I know someone whose kidneys were affected so had to stop. Consultant wants me to try them and I’ve never had to take pills except for a hiatus hernia and that causes stomach problems. Thank you for your help. May be I will try them. Hope you get this as I’m not too brilliant with computers. I am still able to swim and play table tennis every week so I am very lucky.

J1707
J1707
in reply to Briangilbert

Good luck. They will monitor you very closely . I have blood tests every to weeks and the slightest thing they are not happy with the recall me.. your far more active than me 😁

Briangilbert
Briangilbert
in reply to J1707

Yes I am lucky and that is why I am thinking of leaving it for a while before I start. I’m on steroids which I’m lowering the dose of. I’m sure there are people worse off than me. Nice to hear from others what their experiences are.

I have been on methotrexate for 2 years. It does control my pain well, however, I do have the side effect of thinning hair. I use biotin shampoo and take biotin orally. My friends and husband claim they can't notice it but I definitely do. The thinning has leveled off somewhat. Because the methotrexate is working well, I am afraid to try an alternative . I have not experienced any change in the way I taste food or beverages. Tea tastes the same to me. For the first few months, I experienced nausea and fatigue. Thankfully those side effects have disappeared for the most part. Hopefully your side effects will improve.

Def hair thinning and am also worried about losing too much! Again, the pros outweigh the negative effects for me.

I take oral MTX and had the same nausea with drinking tea in the mornings , and I now drink water in the mornings instead. I now only have tea in the afternoon at tea time. Actually, it has been much better for me with my kidney blood tests results which were going down, and are now a lot better with increased water. Sometimes your body tells you what it needs. Good luck xx

Hi, yes I had changes to what things tasted like and hair thinning both settled but haven't gone away completely.

Taste does change a bit but I didn’t lose any weight!

My hair thinned but stopped getting worse after a while.

I'm the same sadly no weight loss here either ! Xx

J1707
J1707
in reply to cpr02

I wish ... weight loss I’ve gained 🥺🥺

Hi cpr02 ironically the ONLY time I can enjoy a cup of tea is with my toast in a morning.Other than that I can't face it.

Also some days my appetite for ANYTHING is affected.

Thankfully I don't seem to have hair thinning though.

Like you my pain has been greatly reduced though so I suppose we can't have it all

Hiya I’ve never posted before so here goes!i am interested in what you have to say about methotrexate as have been advised to go on this by consultant.I will be honest and say I’m scared.Probably because it’s used to treat cancer.i like you have very thick hair so I totally understand how you feel with it thinning.i am heartened that you say it’s helped with pain tho!Big plus when you have RA.i have just learned to put up with it.when it comes to flare-ups that I would not wish on anyone.only one word Horrendous! I was diagnosed nearly 3 years ago.seven months of which they thought was gout!thankfully it’s mainly in one foot.But have noticed my hands recently have changed.When I come onto this site I have no need to complain.i feel bad even moaning about being apprehensive about changing my meds.You are all an inspiration & I feel comfort coming on here reading how things are with people & I can get tips from you all.x

Welcome and been on here since August I think when diagnosed with RA and you get support, ideas, laughter and rants as we all just get it!

Thanks.yes great place to get info.x

Nice to know other people don’t like taking pills unless absolutely necessary. Don’t think the consultant will be happy with not taking her advice, but I will carry on until I really feel I need to. Thanks to everyone

i found methetrexate injectable was fine had idd day of theowing up then 2 years later they decided as my ra activity was still high they would introduce another injectable day after methertrexate called embreal changed name year later to benepali my life seemed back to morm apart from when i had colds bringing on flare ups was on methetrexate 5 and half years when i started getting bad pain in upper stomach after few weeks of this went to gp he put it down to all sorts of things and said take paracetamol im sure it will stop after few more weeks of this pain and me doing google resurch i thought poss the methetrexate was causing fibroids fatty liver its not from alcahol as dont drink snd have hardly drank alcahol my whole life so as rhumy appointment came i tild her im not happy i go through blood tests every 4 weeks so doctors and profetionals can pick up if any meds im

raking or the ra is affecting my organs how come no ones phoned me up iv been to gp twice his not helpful i need a scan of my irgans especially my liver as im convinced iv got fatty liver from methetrexate she my rhumy was like im sure its not but ok so i got sent for scans and YES it came back as fatty liver what the hell are these profetionals doing if they not picking up our medical problems and we have to do there job im so angry

I started using Rogaine for women. It really helped my thinning hair around the edges.

Thank you I.may try that is it a suppliment ? Xx

My friend had significant hair loss but has regained a thick head of hair since taking prebiotic & Probiotic capsules 10-20 billion strength -Recommended by her Rheumatologist but unfortunately not supplied by N.H.S. Mineral supplements including Biotin, & Vit D also help with side effects from meds.

yes, i recall the taste bug and hair loss but had to stop MTX for lung effects [now ok]. Sulfa also affected me. Berry tea [tesco] helped me... but the best was getting a biologic eventually Truxima :). and hair came back. x

I felt like it was a miracle drug when I was struck down with Psoriatic Arthritis last March 2019. I was able to get out of bed and resume my life with the very first dose. I was on 17 1/2 Mg ( 7 tablets) and was on Prednisone for about 6 weeks. I had terrible brain fog, upset stomach, fatiqued and just felt out of it. A lot of foods that I liked were not appealing and coffee and tea did not taste right either. I can say after nearly a year on Methotrexate, I am nearly back to normal; little pain and my appetite has returned. The doc put me on 1 Mg of Folic Acid daily and my hair thinning has stopped. My hair stylist told me that my hair is looking thicker. The only problem I still experience is Psoriasis outbreaks on my scalp and around my ears. My doc suggested that I go on injections to avoid the stomach upset with the pills, but I have not agreed to that yet.

Hiya yes it happened to me too if you look I did a post about my hair. I had long really thick hair and also went into same state but it does stop. I also have that no appetite never feel hungry but I also used to drink coffee like buckets now I have two cups on morning and that’s it. Drink diluted juice the rest of day but didn’t like it before lol I’m on folic acid 6 days a week and sulfasalazine too 🙂

I was unable to take methotrexate as it made my feet and legs swelled up so that I could barely walk. crazy but have had to back to Sulfasalazine.

Hi, re the change in taste you’ve been getting since being on mtx - my RA consultant told me it is called dysgeusia and is a chemical taste possibly caused by the drug detoxing from your system through the soft tissues of the mouth and tongue, (just as it detoxes from your liver/kidneys etc also). No help for it if you’re prone I’m afraid other than sucking mints and steering away from food or drinks which cause it! I suffer dreadfully with it especially from strongly flavoured or spicy foods such as curry, chilli, smoked cheese or meat etc - even flavoured crisps! It was even worse when I was on sulphasalazine and stopped it for that reason! Now I avoid all these things including coffee and milk (but not tea strangely). Cleaning your teeth or chewing sugar free gum after eating or drinking helps but only temporarily. If anyone else has any clues, I’d love to know too as I think I’m brushing my teeth away and am fed up with bland food!

You may also like...