Hi and welcome. I understand your fear. I'm young too and I was quite worried about starting mtx as well. I've had a few side effects in the beginning of taking it such as dizziness, feeling nauseous and headaches but it got better after a few weeks. I always take it in the evening with plenty of food and then I rest the day after. That seems to work well. What really keeps me motivated is the positive change I noticed with the mtx. Much less pain and stiffness. I can move so much better now and my quality of life has improved drastically and in the end that's what you'd like to achieve I think. So please relax and think about the fact that you are very likely to feel some relief in a few weeks. There's a reason why mtx is a very common medication for RA and so many people are glad that it exists. Good luck for tomorrow and let us know how you're getting along

I don't think the fact that you're 18 makes you scared of it. I started MTX in my 50's and I was terrified! I think I sat at my table and stared at the little yellow tablets for ages and ages before having the courage to take them.

But what happened to me? Absolutely nothing.... I felt a bit groggy for the first few weeks, and my hair thinned a bit. But my hair recovered and so did I and taking MTX has helped me be in remission for the last 8 years. These days it's my best friend and I wouldn't be without it. The bad side effects only happen to a minority of people, and being young should make your chances of tolerating it so much better.

So my tips for getting over that first step....drink lots of water, take it before bed so you can go to sleep quickly, and give yourself lots of praise when you've taken them.

And remember, starting to take the drug doesn't mean you have to take it forever. If it doesn't suit you you can just stop. So maybe try this week and see how you feel. One week at a time.

Please don’t be frightened of MTX - I started on it almost 2 years ago, and have none of the side effects that are often mentioned, nor have I had a flare in all that time.

My understanding is that only a very small proportion of people will experience side effects, and these are the ones you tend to hear about, rather than the thousands of people who take it for years without any issues.

I started off taking mine on a Saturday night so I could ‘recover’ on Sunday if I needed to, having convinced myself that I was going to be ill. And then - nothing!

So plan ahead and then go for it - you may be pleasantly surprised. Good luck!

I’m sorry to hear that someone your age is going through all this. I was 38 when I started with RA. I’m 66 now. My best friend when I was 38 had a partner then who woke up one day when he was 19 and couldn’t get out of bed because of sudden RA. He’s 61 now, still with RA but he doesn’t take any meds. He swears by Tai chi and eating a very healthy diet. So keep an open mind to other ways Olivia. In my 40s I found reflexology really helpful too and even my sceptical GP became convininced it was helping to bring my inflammation down.

This forum is a great support. People are very caring and full of knowledge. I hope you get into remission soon.

Hello and welcome Olivia, I’m glad you have found us ( but sorry that you needed to) and hope you find it useful. I’ve been scared of methotrexate too but it has worked for me and hopefully will for you too. You will find quite a lot of us taking methotrexate but apart from a bit of nausea to start with (never actually sick) I’ve not lost any hair or had ulcers.

I take mine on a Monday evening too so I will be there with you for your first dose 😊 Let us know how you do x

Hi, I take mxt as well and it has allowed me to lead a much more normal life. I still have the odd flare but on the whole I’m much better! The first few weeks I did feel sick and tired the following day but now I don't feel sick and only occassionaly feel over tired the following day. Good luck lts hope they work as well for you as for many, many others.

Hello first off welcome 😄 I’ve been on methotrexate once a week for nearly 3 years now. I’ve been lucky and have not had any bad side effects other the the occasional mild nausea Try not to panic or focus too much on the list of side effects and give it a good chance to help you There’s always someone here on this wonderful site to listen and help you as much as we can. 😄

Hi oliviagodfreyx Starting MTX can be a very daunting experience especially as there are so many different opinions about it so if its ok allow me to share mine with you, I started taking MTX 5 yrs ago and like you i was very apprehensive of the whole scenario but i have to say it has worked wonders for me at least up until recently, the only reason the consultant took me off it was because following routine blood monitoring my markers went up to 114 on my liver function and she was concerned that it may have caused some scaring but found this not to be the case, this medication normally takes up to 12 weeks to start working and yes there are side affects dizziness, feeling sick possibly headaches but they can be random and only short term i think once your body becomes acquainted with the change then it does become easier to take and it can give you a whole new lease of life as it did for me, I am now into 7 months of my first infusion of Rituximab and i feel well at the moment so even if MTX doesn't work for you there are many alternatives available so try not to worry to much, I wish you all the luck in the world and please keep posting there are many lovely people on here and are all good listeners and fully understand your concerns so your never alone, We are not doctors but probably understand more than anyone how this rechid condition can impact our lives.

Best of luck and keep posting.

Hi! I can totally understand you as I went through this myself. I was 26 when I started taking medication for RA, it was plaquenil I started with, an “easy” medicine let’s say, but I was so freaked out, I was all nerves when taking it. It worked for me only a few months and after it I started mtx. I am on it for four years and I can say from my experience it is a pretty well tolerable medicine. I did not experience hair loss!!! Nor ulcers (but I use injections, not pills)!! Maybe you can think you need the help of this medicine now, and think of it’s positive effects... of course be aware of the need to take folic acid, maybe a stomach protector (ask your doctor).... but concentrate on it’s good effects in treating this condition... And you need to find the medicine that suits you and if mtx will not, there are other drugs your dr will recommend. As for me, it works well so maybe it will for you too!! Hugs

Hey Olivia

Starting any new medication is daunting for anyone...

I was in a similar situation with not being able to get out of bed, etc. In my case, methotrexate didn't work (although I am still on 20mg), however, since I started etanercept I've seen great improvements in my mobility. Everybody responds differently to different medications and fingers crossed that methotrexate is the one for you!

It took me a little whole to get over dizziness and nausea that I expect was due to the methotrexate but to be honest, when I was first diagnosed I was given such a mix of new medications that it could have been a side effect of any of these!

You were young when you were diagnosed and I was young-ish (22). Doesn't mean we are any more scared than anyone else faced with such a stressful situation! You seem to be doing really well and it's really positive that you got the courage to go ahead with the new treatment even though you were worried. Good luck with it all! And keep us updated

Hi, I'm new too! This is my 4th week on MTX, so far it's been fine. The only thing I have to add to the other comments is that my rheumy told me not to take the folic acid on the same day as the MTX, so I just have it 6 days a week. I wasn't sure about that in your original post?

All the best with it!

Hey Olivia,

I have been on methotrexate for nearly 3 years now and haven't experienced any side effects at all (that I know of!). I am getting on well with it and hydroxy too. I always take MTX at about 21:00 on a Monday - MTX Monday day... and folic acid in the evening too.

xx

Hey love.

Bless you. I was diagnosed at 15, so totally get where you are.

I wouldn't take steroids initially.. As had heard how bad they were for you, but my disease did much more damage, and when I took them I felt wonderful and wished I had earlier.

Anyway.. MTX.. yes some people react bad to them, and so just stop taking them. I started on them at about 23.. And I am still on them, (albeit plus other meds too now..) and I'm nearly 48!

They were the first meds that I took that gave me my life back.

My only side effects were stomach cramps. But after taking probiotics those disappeared and also I knew (know!) when I had drank too much alcohol lol. They advise you not too.. But if you are sensible, you may be fine..

Try them. See how you are. You can always stop them, but if you don't try.. Then you may be missing a chance to feel well again, and that is priceless.

Love Jo xxx

Hi, I'm on MTX too and only for 3 months as my diagnosis is recent. The difference being I am an old lady so my hair loss (which is in my genes anyway) has accelerated; I have never had nausea (take it with a full meal), and a few mouth sores which disappeared with salt water swishing. Some of the old hands at MTX say these things go away with more time. None of the side effects I experience hurt like full blown RA so I am thankful for the meds. I can now do life at about 70% which is awesome. Hang in, and de-stress. 🙂

I was 52 when I was diagnosed with RA and like you I was terrified to take my methotrexate due to fear of side effects. I put off taking it for a month. When I finally started it, my fear was worse than the actual side effects. I had a bit of nausea and serious fatigue at first but over time these side effects lessened. It did take 3 months before I felt relief from pain and stiffness and my Dr had to increase dose to 20 mg. I have been taking MTX for almost 3 years now and the only real side effect I am currently experiencing is hair thinning. The MTX does work for me and side effects thus far are manageable. I do take probiotics and drink lots of tea with ginger and turmeric. I agree with Jo, give it a try. Wishing you the best.

Lisa

Hi olivia,

I am in same boat as you, recently got diagnosed with RD in Dec 2018, started Mtx injections this month, just took my 2nd dose this Friday. Like you I was terrified to take it after reading so many horror stories. But took my first one with heart racing and expecting worse side effects, but whole day "nothing", next day "nothing". Next week I couldn't wait for Friday, as I want to get off prednisone as soon as possible. I decided to follow my Rheumatalogist's advice and start Mtx as I saw no other better option to bring my RA under control. I thought its better to stop the damage first and then think about options to keep it under control. Who knows we might have a cure in something that is yet to be found.

This is my first post om HU, but I have been reading and following many discussions here. I have found great support here, reading about people going through same troubles as me. This forum gave me reassurance that everything is going to be alright, lots of people struggled through and found something that works for them be it medications like DMARD's or Biologics , or be it Diet or CDB. I just have to strong for myself, for my kids and my family just like all others her are. Here's to health & well being to us all...!

Hi Olivia

I’ve been on methotrexate for nearly 4 years and although I’m on other drugs as well it’s been the one that’s made the biggest difference. I also take it in the evening and drink quite a lot of water the afternoon before and the following morning and rest the next day. I’ve had various side effects - a bit of hair loss, mouth ulcers and a bit of dizziness and nausea, all of which disappeared after the first few weeks. Given how much it has reduced the pain and helped my mobility, I’ve never regretted taking it. Good luck !