methotrexate : hi i’m new here. i was advised to join a... - NRAS

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methotrexate

hi i’m new here. i was advised to join a community/forum where i could talk to people in similar situations as me so here it goes.

i was diagnosed with inflammatory arthritis/(JIA) at 16 yrs old. i have been on hydroxychloroquine for 2 years (i am now 18), however it hasn’t been doing much for me and my flare ups have been getting worse and worse to the point where i cant get out of bed and walk.

i have been reluctant to start methotrexate ever since being advised to take it before resulting to hydroxychloroquine. i am NOT good with needles so the blood tests freak me out, however last week i finally got the courage to go ahead and start methotrexate (tablet form). (my first dose is tomorrow which is why i’m writing this post).

i have read so many negative things about this medication, and i know it works differently for different people but i’m young and scared and have been making myself more and more worked up thinking about it. i know it’s for the best and i don’t know what it’ll be like until i try it but is there any tips or anything that could put my mind at ease?

it probably sounds silly to get myself so worked up over a medication but i’m an over thinker and i trick myself into believing everything i see and read on the internet is true even though it most likely isn’t.

i have taken my folic acid earlier on to lessen the side effects for my first dose tomorrow but the side effects it can cause really does give me the fear. such as the ulcers and hair loss and being sick etc.

thankyou for any help :)

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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 :)

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(i tried responding but i’m not sure if my first reply sent as it said network error) thankyou for your reply!! i’ve seen many people say they take their dose in the evenings and at night rather than in the morning. would you suggest to do it later on in the day so i can rest afterwards? i took my folic acid pretty early this morning (around half 9) and was going to do the same tomorrow for my first dose but now i’ve read other people’s posts i was thinking of doing it later on in the day. would my folic acid still be effective despite it being more than 24hrs after taking it?

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I would definitely suggest you take it before bed. basically with your dinner because you can then sleep through some of the side effects (if you get any that is) and rest over night. Drink plenty of fluid tomorrow and the day after taking the mtx to "flush" the system. I'm pretty sure that the folic acid will still be okay and next week you just take it the day before in the evening. Just don't plan anything for the day after taking the mtx this week so you have the chance to relax a bit if you need to :)

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thankyou! i will definitely take it before bed, it makes more sense so i’m not feeling ill throughout the day if there’s any side effects. i’ve taken another folic acid just to make sure. i’ll have to set a reminder on my phone for every sunday. thankyou for your help :)

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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.

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thankyou for replying :) i thought i was being irrational for being worried about it, but after reading many posts i’m glad i’m not the only one who has been reluctant. i’ve been putting it off for years!! i will push through tomorrow and see how it goes. hopefully it won’t be as bad as i thought it would be :)

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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!

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thankyou for your help :) i don’t know why i spend so much time reading things online that aren’t necessarily true. i’m glad i’ve joined a page where other people can give me advice. it’s a huge sigh of relief!

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This is a point where Facebook and google are probably not your friends! I’ve been injecting it for three years now with no side effects at all. I was slightly nauseous at the start, but it soon went away with ginger tea so not very severe. Try it and if it’s making you poorly, you can stop.

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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.

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thankyou :) i will have to try tai chi! my diet isn’t very good so i suppose that doesn’t help. i need to start eating more greens. i’ve found more helpful people on here in the past few hours than i have in my whole 2 years of being diagnosed! thankyou very much for the advice, it means a lot.

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You’re welcome Olivia. I’d have a look at the Paddison Programme too if I were you. He’s on YouTube . A good diet is really important and rest and exercise. Yoga has helped me loads. I’ve had periods of remission with no meds, my last one was 13 blissful years. I hope you get the same.

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Have a look, but don't pay for the programme as the information is available free. Diet, sleep and exercise are all very important for everyone with RA. But we have found on here that with food and drugs what works for one person won't work for another so don't drive yourself crazy looking for the magic solution. And Clint Paddison himself says that you should try things in parallel with your drugs.

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Yes I agree with all that too. Keep an open mind and see what works for you.

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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

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thankyou for your reply it means the world :) i wish i had found this page sooner. i have been so reluctant and unable to talk to people in the same situations as i didn’t know this website existed!

i’m crossing my fingers that i don’t experience any hair loss or ulcers etc. my hair means everything to me!!!

i will let you know how it goes tonight. thankyou for your kind words x

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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.

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thankyou for your reply :) i hope they help with my flare ups as i haven’t even been able to walk! hopefully it will work it’s magic and i’ll be able to be back to my normal self. fingers crossed!!

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I will keep my fingers crossed. Just be prepared for it to take a bit of time to work, I can’t remember how long it was and am sure it varies from person to person but it does work for many of us!

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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. 😄

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thankyou so much! i think it’s just the fear of the unknown at the minute. hopefully i’m just over thinking and it won’t be as bad as i thought it would be. fingers crossed!!

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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.

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thankyou for your reply! i will definitely update how it’s going for me. i will give MTX a go, and like you said, even if it doesn’t work there are many other alternatives i can try. i’m so glad there’s lots of people on here to give advice and tips. it means a lot. thankyou again :)

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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 :)

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thankyou for your advice :) fingers crossed i don’t get any side effects, im going to take it before bed so i can be asleep if i do start to get any (hopefully not) i think it’s just the fear of the unknown at the minute. hopefully it will work it’s magic! thankyou :)

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Yes, it’s the fear of the unknown and we all have it... and I don’t know why but our brain chooses to concentrate itself on the negative aspects and sometimes stays stuck too much on them rather then on the good ones. Wish you good luck and stay in touch!! We are here!!

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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 :)

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thankyou for your kinda words. i’m sad to hear it didn’t work for you but i’m glad you’ve found an alternative. i just keep reminding myself that even if it doesn’t work there will be other medications i can try. i will keep you all updated when i take it this evening :)

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This is exactly it! There are so many medications out there (and new ones in the pipeline) so you have a good shot at finding one that suits you. Good luck tonight :)

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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!

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i hope it’ll be fine for me too! mine told me to take my folic acid 24hrs before so i’m hoping i’ve done it right!! i’ve seen some take it two days before and some take it 24hrs before. it’s all very confusing to me! thankyou for your reply :)

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Yes it is confusing and overwhelming at first! but having the Rheumatology advice line is helpful even though they can take time to reply to messages.

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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

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thankyou so much for your response :) it’s been over an hour since i’ve taken my first dose. so far so good but don’t want to speak too soon xx

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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

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thankyou so much for your kind words. it means the world. i’ve taken my first dose over an hour ago and so far so good. fingers crossed but i don’t want to speak too soon as it’s so early xxx

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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. 🙂

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thank you so much for your reply :) i have taken my first dose after a meal & i keep drinking lots of water. so far so good but not speaking too soon. fingers crossed!!xx

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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

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thankyou for your reply :) i will have to try some tea and ginger! i’m looking at getting some turmeric also. i’ve heard that helps too x

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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...!

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hopefully i will get no side effects also!! and you’re right. this page has reassured me lots into taking the medication and i’m glad i’ve found it. thankyou for your kind words!!

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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 !

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thankyou so much! hoping it will do the same for me. fingers crossed. i took my first dose over an hour ago and so far so good but obviously not speaking too soon as it’s so early :)

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