Methotrexate....petrified

tinydancer

Hi there,
I have been on Sulfa for just over 3 years and last few visits to rheumatologist she has wanted to add in Methotrexate but I was reluctant. Just back from seeing rheumatologist today and I've decided that yes I need to add something else into my meds as we are both thinking Sulfa isn't as effective as it has been.
But I am absolutely petrified!!

She was saying to me about side effects, chest xrays, breathing tests and tbh honest I didn't really take much in...

mike26

hi tinydancer
pleased to meet you, yes it can be worrying all these powerfull meds.
i to was worried, but as time goes on you get used to um and not so frightend.
sulf diddnt work for me, now on met,lef.and about to start TNFs drugs
so itl be tripple whammy for me .
hope it works, dont forget regular blood tests will pick up any problems.
good luck mike26 :roll: :?

dibdab

Hi there,

Try not to panic- most of us on methotrexate cope with the side effects, and you will be monitored via regular blood tests. Remember to take them with food, it helps with the tummy upsets.

Hope it works for you.

Deb x

Boomer13

Hi tinydancer;

I started methotrexate 10 months ago and, like you, was terrified. Keep in mind that the disease (is it RA you have?) is far worse than methotrexate in doses for rheumatic disease. I have some side-effects like nausea and mild cough. They have improved over time and taking proper prescription folic acid has helped. Just be diligent about reporting them to your rheum and doing your bloodwork.

It seems for most people the benefits outweigh the negative effects, so try not to worry.

Best wishes,
Anna

dreamdaisy

I am on injected meth and have very little trouble with side-effects - in fact I can't remember the last time I felt a tad rough after. DD

tinydancer

yes I have RA. the hair loss thing scares the life out of me!

stickywicket

The thing to remember about all listed side-effects is that most of them don't happen. Take the meth with food, take your folic acid as prescribed, have your bloods done regularly and hope for the best. It works for me

trepolpen

hi tinydancer

been on methotrexate 15 years myself & now take 25mg/week , had some problems but since increasing folic acid to 5mg six days a week not had any side effects

would recommend you ask for same dose of folic acid as it will help with most the side effects , its a realy good drug for RA etc & alot better drug than sulfa so dont worry

my hair started to thin a bit but after increasing folic acid it has thickened up & still have full head of hair after 15 years , realy you should not worry

lizzy100

wouldnt worry about it, theyl start you on a low dose, and any change is gradual. iv been on it since end of last year. my bloods have always been fine.
they just did a chest xray before i started it but that was it. they do that before biologics aswell though and TB test.

tinydancer

Thanks everyone for replying. I'll have a think about it over next few days and decide what I'm going to do

trepolpen

tinydancer wrote:

Thanks everyone for replying. I'll have a think about it over next few days and decide what I'm going to do

go for it , it works well for RA & the best of the dramd's , just make sure they are giving you enough folic acid , it will sort of most the side effects , it varies as to how much they want to give you , it depends on the consultant but would recommend high dose folic acid

jojo03

Hi tinydancer

I'm in the same position as you - my consultant has been wanting me to take methotrexate since the beginning of the year. I refused at first, but since having scans on my hands and feet, which show a lot of inflammation and damage, I'm reluctantly starting to think I may have to give it a go.

I am on sulfasalazine at the moment, and hydroxichloriquine - neither of which seem to be doing much to dampen down the RA.

I'm due to go back to the consultant on 25th November and am already feeling nervous about the meth! Perhaps we can be brave for each other and listen to what the others are saying on here - they seem to be coping with it ok. I'm worried that if I say no to taking it again, the consultant will strike me off his list!

Feel free to message me if you like,
Jo xx.

tinydancer

jojo03 wrote:

Hi tinydancer

I'm in the same position as you - my consultant has been wanting me to take methotrexate since the beginning of the year. I refused at first, but since having scans on my hands and feet, which show a lot of inflammation and damage, I'm reluctantly starting to think I may have to give it a go.

I am on sulfasalazine at the moment, and hydroxichloriquine - neither of which seem to be doing much to dampen down the RA.

I'm due to go back to the consultant on 25th November and am already feeling nervous about the meth! Perhaps we can be brave for each other and listen to what the others are saying on here - they seem to be coping with it ok. I'm worried that if I say no to taking it again, the consultant will strike me off his list!

Feel free to message me if you like,
Jo xx.

sounds like a plan Jo x I'm the same, although I've agreed to start meth I'm thinking in me head if I don't then my rheumy will take me off her list. I know in my own head that yes I should go ahead with it but I'm scared

jojo03

Well I'm glad it's not just me feeling scared about it! Have you got a prescription for it yet, or do you know when you are due to start it? xx

Boomer13

I was afraid of losing my hair too. I already had hair loss but it seems it was from something autoimmune (not RA) because it has stopped since I began methotrexate. I do have hair bleaching though. Even my eyelashes are coming in thicker and blonde! I used to have blonde hair but it's slowly darkened over the years. But hey, it's better than grey, though there's lots of that too!

You know if you experience side-effects that are unpleasant you can always come off treatment. With discussion with your rheum of course. Try not to worry too much, mtx may make you feel better!

xxAnna

tinydancer

I've got my form from rheumy to take to my doctor for him to give me the prescription. Eek! I've also got to get a chest X-ray. Just to drop in anytime to the hospital for that. I'll get an appointment through to go for breathing tests also.

Kittkat

Hello
It has already been said but please don't be scared. I have had no nausea just some mouth ulcers which have resolved and now on higher folic acid which I hope will keep them at bay. I have gone from being scared of meds to welcoming them with open arms.Plus my fav doc at my gp surgery said: 'well you know what in my 25 years of practice I have never seen anyone have a problem with meth (for arthur)' Can't be all bad.
Take care x

DebraKelly

First of all don't be scared.

I was worried when I first started on Meth 4 years ago but its a great drug and I couldn't do without it. Although I am off it for a while just now.

Yes you will have side effects at first but these will wear off after time.

Chest exray's are normal for when you are are on Meth, as it can cause problems if you have asthma etc I had to get this done too as well as an MRI (but I have other problems).

My biggest tip for coping with the sickness is Ginger biscuits or diet coke, mints also help.

Good luck with it.

jojo03

Hi tiny dancer,

I just wondered it you'd started on the meth yet, and how you are getting on?

Hope you are feeling well.

Jo x.

maria09

Hi
I have only just found your post
I started methotrexate in jan this year before I started it I was told by my Rheumy nurse to have my flu and pneumonia jab as my rheumy and GPs are covered by different health authorities my GP nurse said I didn't need the pneumonia jab as they didn't not require it luckily I had my methotrexate book with me which stated I had to have both whilst theirs said just flu jab
She checked with our GP who said if that's what is requested then she must have it! 2 ouches later it was sorted
I too was very reluctant to start it as I knew how nasty the side effects were but my Rheumy convinced me eventually!
I had no side effects apart from a little patch of hair loss but nothing else
In June I had to stop due to having surgery and it could affect wound healing by August I was desperate to re start it and was told Metoject might be better for me as the tablets didn't seem to be working so end of August I started Metoject and by middle of October it kicked in and I'm walking much better and feeling better in myself I still have pain but its nothing like it was and now reducing tramadol
On a plus side my little bald patch has gone I'm not sure if its just a coincidence but it's all grown back since I've been using Metoject
I also take folic acid daily but not on methotrexate day
Just be aware that if get a cold, sore throat you must contact your GP and stop methotrexate until your infection has gone
I really hope it helps for you
Maria