This Inflammatory Arthritis is pretty scary!

This Inflammatory Arthritis is pretty scary!

Hi Everyone.

Am new to all this,so please bare with me. Was meant to start taking Methotrexate in December,but was too scared to do it. So have left it till now,and I'm finding myself in increasing pain,where I have no choice but to do something.

My biggest fear with the Methotrexate is hairloss,don't mean to sound vain,but my hair is quite important to me. Am worried that I'll take them for a few weeks,and wake up one morning bald,a little dramatic I know,but.......

And also the sickness when you start taking them,enough to put anyone off,lol.

Would really appreciate hearing anyone elses eexperiences.



35 Replies

  • Hi.

    You sound like such a lovely lady,who has been through an awful lot,but still manages to smile. And you have given me inspiration,thankyou so much.

    Will let you know how I get on,and more importantly,about the hair,lol.xx

  • Actually, I have full use of my limbs, body and I can walk yet so I have Not been though it all but I've seen people who have when I go to the Rheumy. I know that it's coming if we can't stop it. I can't feel my feet at's going up my legs. My hands tingle and hurt, are numb. It's neuropathy or my nerve disease. My nerves in the entire body are dying and they need to figure out why. My blood pressure is too low..always and then it goes lower when I get up fast.. Rituxan is the hope with MTX for life. I do have inflammatory arthritis which is probably RA.. Thanks and you too sound lovely. Our words do not mean the same thing I am finding out.. Ask if I insult.. I'm from the USA and my intentions are to uplift and sympathize with others. I mean everything well... Your hair Sandra, is gorgeous. I want hair like yours. Mine is long and blond/ brown.. I should put my photo up. XX Karen

  • Hi,

    I assume you will be starting on tablets. You will also be prescribed folic acid to help reduce the side effects. I take mine on every day except for MTX day. Different consultants have different ideas about how and when to take them. You could also be prescribed anti sickness tablets, but you might not need them.

    When I started on a very low dose tablets, 7.5mg, I had no side effects at all. By the time it the dose had been increased to 20mg I felt a little nauseous on the day of taking them. So I changed to subcutaneous injections. No side effects at all. I've never lost any hair, but always had a good head of thick hair. The only time I ever lost any hair was when having chemotherapy for cancer. But that all came back. My hair has been a bit thinner since then, but I always have a number 3 cut. I'm now on 25ml injections with 10mg Leflunomide.

    I realise we are all different, but your worries might not happen.

    The benefits of the treatment are worth just giving it a try. If your worst fears do occur, you could always change treatments again.

    Wishing you all the best.

    poemsgalore. xx

  • Aaw! thankyou. Sounds like you've been through alot,and got through :-)

    Really appreciate your feedback. Will let you know how I get on.


  • I lost hair several times when I was younger so was terribly worried about this side effect too. But in my two years on MTX I never lost any - hair remained very thick throughout in fact. I was also worried about the sickness but for first six months this was not an issue - when it became one on higher doses then I was switched to injections which was fine. Eventually I did have tummy problems and came off but I think I have something wrong with my upper abdomen rather than this being the Methotrexate.

    Hope this reasures you a bit. Many people do very well indeed on Methotrexate. The reports you read on here and on Google are just a small minority of unlucky people. Good luck!

  • Thankyou,it's good to hear of positive experiences :-)

  • You are amazing twitchytoes. You write so well, like a teacher.

    I always picture you calm and in control. =)

  • Thanks everyone for your replies :-) Made me feel a bit better,helps to get other peoples opinions,and hear their experiences. think I will give Methotrexate a go. And will let you all know how I get on.

    Thanks again.x

  • Hi Sandra,

    Firstly welcome to this forum.

    The whole business of RA is scary and an emotional shock but you will get through this and settle down to your treatment regime. Be sure to use your support networks and to talk to people.

    I was diagnosed in September and have been taking methotrexate (MTX) since then with absolute minimum side effects. I take mine on a Thursday morning and by the afternoons feel a bit rough (headache and fatigued) but that is easing and I have discovered that if I drink loads of water through out the week (especially on Wednesday) they are less pronounced.

    My diet has changed to a much healthier one and pacing myself to ease the fatigue has helped.

    If you look at past post you will find some positive feedback about meds and how the manage their side effects if you suffer from them. Also the NRAS has a help line which it might be worth you ringing to talk through your worries about the meds.

    What does are you starting with? I started on 10mg and have build up to 20mg which I've been on since late November. I take 5mg of folic acid on Sunday's and currently do not need to take my naproxen on a daily basis.

    Good luck


  • Thanks Ali.

    My starting dose is 10mg,and then gradual build up. At the minute I'm not taking anything at all,and am in increasing pain,so feel I have no choice now. It's good to hear other peoples experiences though,and it does help me. The water thing is good,and will try that,as don't drink enough at mo,probably try get healthier lifestyle aswell. Thanks for getting in touch. Will let you know how I get on :-)

  • I usually take mine in the evening. That way if I do feel ill (haven't yet) I can just go to bed. xx

  • Hi Sandra,

    I took Methotrexate for nearly 3 years, most of that time at maximum dosage. My hair was absolutely fine even though I'm at an age when it could start thinning anyway.

    I never experienced any nausea or sickness.

    I expect there are many others like me who get on really well with Mtx but obviously people are more likely to post about it when it's causing problems or failing to help.

    In fact I did have to come off it eventually due to raised liver enzymes. As far as I can tell no damage has been done - the blood tests usually flag up any such problems in good time. Mtx takes a while to take effect, you'll need patience, but it made me feel normal again, banishing stiffness and restoring energy.

    Don't worry and good luck. I hope Mtx helps you considerably.

  • Thankyou, so good to hear positive feedback,it helps :-)

  • Hiya Sandra & welcome. I am one for who methotrexate has worked very well, 6 years now & yes, to begin with I had some hair loss but it settled somewhat once I'd been on it a few months, I suppose it was my body getting used to the med & decreased folate levels. The thing that I had more of a problem with was nausea & although my folic acid was increased it continued so my Consultant decided to change me to injections. I've only recently had an increase of the 15mg I've been taking all that while, up to 17.5mg now trying to work up to 20mg. What has been a bonus, the hair that I did lose grew back a different texture & with a definite wave. I keep it shorter because that's how I find it easier to style but don't need to do anything with the back except put a brush through it once is dried naturally. I know how you're feeling, hair defines us but it's not a given you'll have any side effects though to be realistic it's not uncommon to have on or more of the minor ones but the folic acid your Rheumy prescribed will help with those. Depending on how often he directed you to take it it is possible you could increase it if any side effects aren't tolerable, I take a 5g every day except the day I inject. Again, like me if you find you can't cope with any if you do have some he can consider you changing to injections. That probably sounds scary if you've not had need to do it before but it's really not once you've done it a few times, honestly. I have less appetite the day after & a little more tired but that's nothing compared to how I know I am without it having gone 3 months without it or any of my other meds whilst waiting to see a Rheumy to reinstate them when we returned to the UK from living abroad.

    Whilst taking MTX we're well monitored & any issues are quickly acted on & I would advise if you have any questions or fears that you ask your Rheumy. We can help through experience so fire away any questions you feel you need before you start taking it, but your Rheumy is aware that you've not yet started on it yet isn't he? What are you taking just now,the earlier we start treatment the better but you maybe know that & why you've found us & asked the question!

    It was my second DMARD after my first started to become less effective after a year & maybe it was because I was already on meds but I was just grateful my Consultant could offer me something else to help with the inflammation & pain I'd started to get in different places.

    I hope you find comfort in the replies you've had & can make the right decision for you. :)

  • Hi.

    At the minute 'm not taking anything apart from paracetamol,and ibruprofen. Was supposed to start the Methotrexate in December,but was scared of all the side effects. In lots of pain now,so have to do something. Thanks for letting me know your experiences,it's helped me to make up my mind. Will let you know how I get on :-)

  • I'll be brutally honest. I Had the same fears, but haven't had but one side affect in 2 yrs of taking MTX. I developed nose sores (Painful) but not serious, got that cleared up w a topical ointment prescribed. The folic acid is supposed to help prevent the mouth/nose sores and my rheumy told me to take FA every day including MTX day, said it didn't matter. Just know it will take mos for the MTX to start working if it works at all for you. So the longer you delay the worse the RA gets and irreversible damage occurs in your body. The thing that scared me into taking it was more than one Dr (even the holistic des) telling me that RA can affect my lungs, heart, kidney, and that's serious!! They said you need to stop the advance of RA now.

    I could barely walk for 7 mos, in so much pain before the right Dr got the right combo of drugs and took the inflammation down w steroid shot and prednisone for 30 days. Yes they are all scary but I'm back to playing tennis 3 times a week and hope I can someday wean of some of them. Good luck and give it a try.

  • I take mine at night after dinner and have never felt any tummy upset at all.

  • How much folic acid, Marsha? I live in the USA and was told 1mg

    every single day including treatment day. Many on this forum

    take more than that.

  • The majority on here will be prescribed 5mg as most of our members are in the UK & our guidelines differ from US guidelines regarding dose. From what I've gathered from other US members it does appear that the norm is to be prescribed only 1mg & taking it the same day as MTX obviously won't have the same effect on absorbtion of the MTX as taking 5mg the same day & why we're normally advised to not take the two the same day. I've c & p'd this from the NRAS website

    "MTX depletes the body of folic acid and the frequency of side-effects can be reduced by taking supplements of folic acid. It is usually prescribed at 5-10mg once weekly but sometimes at 5mg every day except that on which MTX is taken. Taking higher doses may reduce the efficacy of MTX and most rheumatologists recommend taking the folic acid one or two days after the MTX, and in particular not taking it on the same day as the MTX."

    As Marsha also lives in the US I would think she'll still be taking 1mg daily as she's mentioned it previously some while ago, unless her Rheumy has changed it more recently but I think she'd have mentioned it if that was the case.

  • Thank you for fast reply.

  • No probs. It would be helpful if we had some form of ID so we know which country a member is in as there are quite a few differences, the NHS seems to be different in many ways. I've in the past been treated under very similar guidelines to the US & it is quite different to here in some respects so it's little wonder we don't understand the differences in treatment sometimes.

  • I take 5mg of folic acid three times per week.

  • Thanks Marsha. I think i have no choice but to give it a try,it's never quite as bad as you imagine is it? Thanks again.

  • Sandra. I am in California and yes 1mg daily is what I take.

  • I feel scared of mtx and have put this off for a year and thinking about it now, yikies2 has just scared the pants off me there are so many things to learn about rd the main thing we are all different and progress at different stages some even get better when they find the treatment ,fear is the strongest enemy for me so I don't feel bad about taking things slowly hope you find your way too

  • June, you know how things are & the experience of one person doesn't mean it will be shared by you, you've said so yourself so I know you do. It's difficult when someone is struggling on their meds & sometimes it comes over as negative but many more do well on their meds, you know I do & I'm not alone, you've read the other replies here. I know it can be concerning but think how you could be so much better rather than fearing what may never happen. Be guided by your Rheumy & all your friends here, you'll get there in your own time & you know you'll receive support if you have a wobble. x

  • Oh honey, I didn't mean to scare you. My nerves are dying.. I have

    a little different disease. Some people with RA wait to take medicines

    until they have lost so much or the meds don't work..In USA I've had MTX

    before for 2 years.. it thinned the front of my hair a lot and I was sick

    but they didn't tell me to take folic acid...

    I took other Reicade, Humira, Simponi during that time...

    Have hope, Tons of hope...and I am going to edit my response..

    I didn't mean to scare you ... but if you don't treat it, it might

    get that bad...and in the USA, the people "Can" kinda be like

    I described, at least in Wisconsin... I meant that I was clumsy

    without my knee.. I have one in now and I am soooo happy

    with it.. but take care of yourself and I would try the medicines..

    And I will never ever write a post like that again.. I was having a

    rough time and I always assume that others do too... lesson

    learned.. Good Luck..and yes, I will curse and scream if I lose

    my hair from Rituxan and MTX.. I will cry too.. My looks are

    important to me.

    XX Karen

  • hi hope you are feeling better today ,your post has been a wake up call for me ,no the truth is well out as they say ,thank you xx june

  • I was just as scared to start medication but my consultant told me that leaving the RD untreated was more dangerous to my body. The sooner you start the less problems you will have with your joints. I was only on Methotrexate a short while as it gave me stomach cramps and so tried two different things until I was put on Enbrel. I am now back on my feet, walking my regime of 2-3 miles a day. I have not noticed hair loss with any of the medications I have been on.

  • Hi Sandra

    I have been on Methotrexate for 7yrs now, no hair loss but slight fatigue the day after taking it. I've been on the full dose from the start, then only last year my Rheumy reduced it slightly. I have just been put back on full dose as my symptoms returned slowly.

    Please don't listen to the bad stuff too much, put your faith in your medical team and the old timers in this community, they know their stuff. Good luck xxxx

  • Personally, I never felt that MTX did a whole lot for me in terms of managing my RA (though it seems that MTX and I have grown accustomed to one another).

    On the plus side, I had NO side effects whatsoever. I never experienced hair loss or nausea. I don't get headaches from it. I find sometimes that I am thirstier the day that I take it, but that's about the extent of it.

    We're each different so the only way to know how it is for you is to try it.

    That said, some people have had some success managing their RA symptoms through diet (, so if you're really anti big pharma, then you could give that a go.

    For me, I would rather halt the damage with drugs quickly and then follow a "clean" diet supplemental to the drugs (eating fruits, veggies & meat can't be unhealthier than processed and sugar-laden foods!). My goals are two-fold - 1) to get my RA in remission and 2) to take as little drugs as possible while still managing the disease.

    As much as I see each person's experience with RA to be unique, I think how we treat and/or manage the disease is also a personal journey. Best of luck to you in yours.

  • Just to add, I was in a pretty low state when I started MTX and quickly weaned my son so that I could start the medication because I imagined it to be a quick fix and that I was trading nursing him for being able to pick him up, or play with him and his older brother. So, I had high hopes when starting MTX. But I was on it, starting at 4 tabs and increasing by 2 tabs every 6 weeks until at 10 (25 mg), and still each day was worse than the previous one. It wasn't until 7 months later that I started Humira that I began to feel improvement. Now I am on Humira and MTX and some personal tweaking has proven that my RA is improved with the combination - so the MTX must be doing something!

    I don't mean to scare you, but just want you to know that it's not necessarily a quick fix (though some people do respond to MTX more quickly). Gentle hugs! I do hope that you get some relief soon!

  • Hi Sandra7, I am also new on this great site. When I read about MTX and the side effects I was petrified, just the mention of it being a chemo drug scared me so that when it was time to take it I was a basket case! I took it and waited for some sort of a reaction but nothing happened, been taking it now for almost 2 years and it has helped considerably. Like you, and I'm sure all of us, I was afraid of hair loss and yes I had some but loads of hairstyles to compensate! My hair thinned out a little but no great amount. As for other side effects, NONE!! I hope when you start with the MTX, you are pleasantly does take quite some time for results to show but it was worth the wait! GOOD LUCK!

  • Thanks Yikes - my family would be in stitches if they read how you perceive me to be - but I take it as a great compliment. X

  • I understand completely about your worries, I too felt the same going onto metho, although honestly at that point I just wanted relief from the symptoms and the pain! I didn't lose any hair and my hair is really important to me so I was worried but it was fine. Yes I did get the nausea and badly but I learnt that I take it just before I go to sleep so that the sickness passes through the night, I also changed from folic acid to folinic acid which is similar but not as harsh on the tummy, and then I was prescribed anti sickness meds to get me through, all worked out well for a long time and I was on metho for around 9 years from age of 34 so it really helped. The damage that can be done by not treating is far worse than feeling sick so I would urge you to take it :-) good luck! Fear is part of this disease so you need to face it as best you can. Getting the disease under control is the best thing you can do for yourself and your loved ones.

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