will be starting methotrexate soon. what can I expect, can it cause weight gain

[dillydally1]

I am due to start methotrexate soon, feel apprehensive, due to what I have read about it. does it cause weight gain (why). what's the best time of day to take it. any info on your experiences with the drug would be very much appreciated. x

[Hidden]

Hi I was on methotrexate. A while a go.not sure about weight gain.main symptoms for me was it drains you and you have no energy.even a while after you come of it.you take it once a week at same time usually 8 tablets .then get your blood test every w or 4 weeks to help keep lungs etc hope this helps

[dillydally1 in reply to Hidden]

yes this has helped, thank you x

[mary4444]

hi dilly dally 1 i never had any weight gain at all i couldnt tolerate the pills but i got weak stomache anyway and we all different i went on to 1 injection a week which suited me fine i use to take mine every thurs 8am they will probeley give u folic acid and u take one every day except the day u take your mthx dont worry u will be fine i was on it for 8 years wish u the best of luck mary xx

[dillydally1 in reply to mary4444]

thanks, glad the injections are working for you xx

[mary4444 in reply to dillydally1]

dillydaily no after 8yrs it stopped working and am in remission go back to rhumy april see what they suggest then only on pain killers at the moment mtx does help give u your life back best of luck mary xx

[dillydally1 in reply to mary4444]

thank you

[nomoreheels]

You'll find lots of info on this in the search box, all contradictory because of our reactions & tolerances etc but mine is a positive one. I've been on it nearly 8 years, first year tablets & subcut ever since. It's been the most successful DMARD of four I've been prescribed & if there ever comes the day it stops working it'll be a sorry one for me. I don't tolerate more than 17.5mg injection wise but I'd probably get up to 20mg on tablets (less of the med is lost as it enters the blood stream & doesn't go through the digestive tract). Reason being is my LFT's rise but on 17.5mg they're always mid scale save for the odd unexplainable blip but I think that could be down to how many co-codamol I need around the time of drug monitoring bloods. I had slight hair thinning when I first started it but I was only prescribed 1 folic acid the day after, that was increased to the day before too but I think it was that the longer I took it that I noticed less hair in my brush. It's not been a bad experience really, my normally fine but plentiful hair that refused to stay in a style now has body for the first time as it grew back wavy.

I don't drink alcohol so that's not an issue for me but I do understand it can be a disappointment needing to limit it if you do. Best to ask your Rheumy for his/her thoughts on it but it makes sense to avoid drinking until you've a few monitoring bloods under your belt just until you have a clear indication if MTX is likely to give higher than normal ALT/AST & ALP results. It's normal to have fortnightly bloods initially for around 6-8 weeks as with any DMARD, I've remained on monthly monitoring but once you're established it may be less frequent, it depends on your Rheumy's preference. I'm a bit more tired & don't feel much like eating the following day, feel more like picking really so have an avocado for lunch & probably peanut butter on toast in the evening. I take folic acid every day except the day I inject. No weight gain so that's something to be happy about!

I really hope it works for you. It's unfortunate people focus on it being first licensed as a chemo drug, we take it at far lower doses & far less often. Like you generally those apprehensive about starting it have looked online. I often wonder if they usually read up on other meds they're due to start. Yes it has as many potential side effects but so do other RD meds yet it still gets a bad press until that is you see for yourself you worried for nothing as most do. Remember as well only 10% of people with RD use forums, those not doing so well generally, so 90%, are doing ok & getting on with their lives. As MTX is generally the first DMARD prescribed in other than the milder cases & has been for around 30 years, that's got to be a good percentage doing ok. Neither would it continue to be the first med prescribed if it wasn't getting results & in the main tolerated well enough. Yes there can be toxicity but it really is very rare but bad news makes good headlines isn't that what they say? Nothing else has taken it's considered place as the gold standard treatment for initial prescribing. 🙂

[Karalyn53 in reply to nomoreheels]

This is a great response, thanks

[nomoreheels in reply to Karalyn53]

I hope it helps.

[dillydally1 in reply to Karalyn53]

yes, everyone is so helpful and caring. that alone makes you feel better and not alone x

[dillydally1 in reply to nomoreheels]

thank you for such positive info, I really appreciate it. I now feel more positive. hope you are keeping well. xx

[nomoreheels in reply to dillydally1]

You're welcome. I hope it suits you. Keep in mind usually side effects lessen as your body gets used to it so do persevere if you have any of the common ones or make your Rheumy nurse aware. If your Rheumy starts you off on less folic acid than 6 days/wk an increase in days often helps. MTX is a folate antagonist, it can't determine between good cells we need (folate) & the bad cells we don't so & we don't store what we produce naturally hence the need to replenish it with folic acid to ease the side effects.

If you've not happened upon it, if you're not saturated with info there's more on MTX here nras.org.uk/methotrexate-in...

I'm a wee bit weary truth be told. Had my first physio appointment this morning & in determining what's needed to sort my neck & shoulder problems she had me doing all sorts with her & some of my muscles haven't done what they did for quite some while! She kept telling me off for overpushing, I guess that's why I'm feeling as I am. My posture's way out to compensate for the impingement which I knew but I wasn't aware I tilt my head forward & my chin out!! x😵

[dillydally1 in reply to nomoreheels]

hope the physio goes well for you x

[nomoreheels in reply to dillydally1]

Thank you. x

[Beaches2]

Hi

It hasn't caused any weight gain for me, been on it 3 years now.For the first few months it made me feel really sick, but we upped my folic acid to 6 times a week and that seemed to sort it. Had some hair loss when we added in leflunomide but that settled and my hair is fine now. I am on the tablets and take them straight after my tea so On a full stomach ( to try and avoid the sickness). Didn't work on its own for me, am now also on leflunomide and a biologic.

Good luck to you.

[dillydally1 in reply to Beaches2]

thanks, hope your medications are working well for you. xx

[Leonwp]

It affects 100 different people in a 100 different ways, some have excellent results and some it makes little difference, some tolerate MTX with no noticeable side effects, some (and unfortunately im one) cant tolerate it at all, but it is strong medicine. I hope your symptoms ae mild and it does what you need it to.

Blessings.

[dillydally1 in reply to Leonwp]

thanks, hope you have found another drug that works for you. good luck x

[phil_54]

hI, I have been on MTX for 2 years now started on tablets but recently gone on injections the biggest side effect for me is feeling sick especially with tablets since i started injections sickly feeling not as noticeable but definatly less energy and feeling tired all the time about 4 hours sleep most nights very important to get blood monitoring main side effects kidney and liver functions, Also need to keep taking hydrox to protect imune system, Remember MTX can take up to 12 weeks to start working but i wouldnt be without it really helps me, Good luck hope everything works out for you.

[dillydally1 in reply to phil_54]

really glad its working for you, I take hydroxychloroquine x

[sylvi]

Steroids put weight i don't think mtx does. I take my mtx in the morning with my other drugs,but i don't have an side efects from it either,xxxxx

[dillydally1 in reply to sylvi]

thanks, love your red bow x

[BoneyC]

I've never gained weight due to MTX, been on it for 37 years.

[dillydally1 in reply to BoneyC]

wow that's a long time, hope it keeps working for you x

[BoneyC in reply to dillydally1]

I was one of the first to go on MTX . Thanks, so do I!

[AgedCrone]

I think the best way to approach Mtx is to tell yourself that this is the drug for you & it is going to work. Don't stress over every little change in the way you feel....it will probably be nothing to do with Mtx!

I'm sure you have read horror stories about it....but if you think about it - if someone has a bad experience of course they will tell everybody...but I don't know anyone taking any medication who goes around saying how brilliant it is.....do you?

Like most people I was very apprehensive about Mtx, but for 7 years it was amazing...I hardly knew I had RA...yes I did have to come off it because side effects appeared ....but I don't regret taking it one bit....I had seven really good years.....& no I didn't gain weight!

I found the best time to take it was after my evening meal. I'm a firm believer if you take a pill at night you go to sleep & if you do feel nauseous it's worn off by the time you wake up! Do remember to take the Folic Acid every day except the day you take the Mtx. If your doctor hasn't prescribed the FA...ask why.

Good Luck.....Mtx works for a lot of people I do hope it works it's magic for you!

[dillydally1]

thank you for the very positive info. hope you have found something else that helps you x

[Gnarli]

I can't add anything to the excellent advice given here but, like you, I'm about to start taking it. The mtx and folic acid are just waiting for me to get the go ahead. The breathing test results are holding things up. As I'm having yet another small flare I feel that the pills will work and life will return to something like normal. It has to be better

[dillydally1 in reply to Gnarli]

I really hope it works for you. x

[Gnarli in reply to dillydally1]

You too, sweetheart. But if not, there's a massive armoury of other drugs to try. Huge gentle hugs

[dillydally1 in reply to Gnarli]

love your name by the way. x

[Gnarli in reply to dillydally1]

Sorry, my manners have deserted me. Thank you. Yup,it's ironic really as, being a mad keen knitter, I chose buttons with great care -it can make a massive difference. Now, they're the bane of my life- especially those tricksy little blighters on jeans

[Gnarli in reply to Gnarli]

Ps brain dead too. Love your name more

[dillydally1 in reply to Gnarli]

ah ah xx

[ranne21]

I understand your concerns. However, I started on Mtx injections last October, after getting a second opinion (it was originally handed out with little explanation and just a leaflet!) and I did a lot of investigation first. I felt just a bit dodgy after taking it and during the next day but this cleared up when my folic acid was increased from once a week to three times a week. At the moment I've not seen any hair loss or weight gain and have no side effects at all. Remember the injection option if you do suffer from bad nausea.

[dillydally1 in reply to ranne21]

thank you x

[Barb66 in reply to ranne21]

Hi ranne21 how long did it take to feel normal and fit for work on mtx? xx

[ranne21 in reply to Barb66]

I was never off work, but just struggling more and more with my joints plus fatigue. I'm seronegative so it took ages to get myself referred to the hospital for investigation. Having scanned and x-rayed me they decided I have RA as well as long standing osteoarthritis and my joints have been damaged owing the RA being undiagnosed previously. I've been unusual in that the Mtx had an effect quite quickly (just a few weeks), but my joints aren't fully sorted - just better than before.

[dillydally1 in reply to ranne21]

hope you soon get sorted, x

[Barb66 in reply to ranne21]

Oh that's encouraging thank you

[JEM95]

I've been on it just over three years and it has been brilliant for me. As has been said before it is different for everyone.

A couple of times I have had to increase my dosage (can't really go any higher now). I have found I'll be fine for ages and then the symptoms start creeping back - maybe my body gets used to it and needs more.

Initially the side effects were horrendous - churning tummy, hair thinning, fatigue, tummy cramps, nausea etc - but I think the old bod gets used to it in time and it settles down.

I inject which has lessened the side effects for me. I inject at night so I can sleep through any resulting nasties - that works for me too.

There is a huge amount of negative press about MXT, yes it doesn't work for everyone or suit everyone. I decided to give it a good try, and keep an open mind. It would have been easy to give up on it in the first three or four months but I stuck with it and it has been marvellous - given me back my life 😀 I will never be as I was pre RA, but I have a good life and can still do lots.

Good luck - hope it is as good for you as it has been for me xx

[dillydally1 in reply to JEM95]

thank you for such a positive reply. xx

[Kyriew]

HI Dilydally I have been on Metotrexate for 4 months now and have had no side effects except the eventual calming of my pain. I also feel I have less fatigue but that might just be acceptance that I can not do what I used to. It took about 3 months to start working so persevere. I am now able to walk in the morning which is a joy and although I am not what you would call pain free I am able to live with what I have and take next to no pain killers. I do have the odd glass of wine or a g&T but I learnt very quickly that its not a good idea to have more than a couple (passed out in the bathroom after 3 glasses of wine) I haven't found any weight gain. I take mine in the morning when I take my other tablets for various problems. Hope they work for you.

xx

[dillydally1 in reply to Kyriew]

thank you for your positive post. hope it keeps working for you xx

[martinj_smithz]

Hi, I was on Methotrexate and obviously reactions are an individual matter but read the warnings in the drug packet. I had no weight gain and no benefit in terms of RA but, as the instructions warn, loss of concentration which effectively meant do not drive! I realised this after missing 2 turnings when driving that I make on a regular basis. As you cannot donate blood till 12 months after stopping this drug it is clearly highly toxic - read the small print is my advice.

[dillydally1 in reply to martinj_smithz]

thank you x

[Kinz1]

Methotrexate worked well for me - at least for my joints! After a couple of years I was very breathless and, when my lungs were checked, they were discovered to be working at only about 60% of normal. The MTX was immediately stopped and initially blamed for what was then labelled Idiopathic Pulmonary Fibrosis. I underwent treatment to help the progression of the Fibrosis which seemed to have worked at first but then the fibrosis returned so it wasn't the MTX. My Consultant said that it can happen (especially in men) so everyone starting MTX should get regular chest x-rays so please ensure you do, both before you start and regularly afterwards. My lung problems have had a huge impact on my life.

[dillydally1 in reply to Kinz1]

hi, thank you for your reply, I am sorry your lung problem has had such an impact on your life, I hope they can find something that will improve your quality of life. have they managed to find another medication that will ease your arthritis. take care xx

[Kinz1]

I have been on a programme of Rituximab for about three years now - and it is wonderful. No pain most of the time and no swelling. It's my wonder drug.

[dillydally1 in reply to Kinz1]

great news x