Starting methotrexate tomorrow and really scared!!!

rivermum · 28. Aug 2011, 11:41

Hi everyone

Hope you're all having a good day. I haven't posted on here for a while, but I have now been given a confirmed diagnosis of RA by the most fantastic rheumatologist at Southend Hospital; she is truly remarkable and talks to me like I'm her equal, and not an idiot who limps and breaks wine glasses on a daily basis!!!

I had a a depo injection the other week; but an ultrasound of my hands showed grade 2 doppler changes, so the depo wasn't as effective as we hoped. I'm having some acid injected into my knees soon, but the doc is now starting me on 15mg of methotrexate tomorrow...I am absolutely terrified about how I'm going to react to it.

I would really appreciate any hints or tips that you guys can give me as I can't stop thinking about it.

Thanks

Sue x

lindalegs · 28. Aug 2011, 12:05

Hi Sue,

Don't be worried about Mtx it is a very good drug even though it's a Dmard.

I started on it in 2008 and noticed an improvement with my RA in 2 - 3 weeks of taking it (though for some people it can be up to 12 weeks). I did get some nausea, sometimes vomiting and headaches as the dose was increased so my Rheumy dropped me to 10mg which suited me fine.

Side effects, generally, tend to settle down and you will be regularly monitored with blood tests to make sure you're okay.

Some people take theirs after their evening meal so that they'll sleep through the side effects.

Hope this helps and let us know how you go on. Good luck.

ironic · 28. Aug 2011, 12:09

Dear Sue, of course you are scared it is only natural. I am glad that you have a good rheumy and she is keeping a good eye on you.
Now if you are like me you have already done the classic internet research and frightened yourself to death. Deep breath Sue, believe me lots of people have had a wonderful result from this drug and it has controlled their RA very well.
Most of us take the mtx before we go to bed that way any nausea is slept off. We are all different Sue in how we react to medication and why shouldn’t you be one of the lucky ones that don’t have any reaction at all. It is a big step for you and if you do have any problems come back and tell us as we do know a few ways to get round it.
I take mine with a glass of water and I do tend to have it about an hour after eating. Have you been given folic acid to take? I also have a stomach protector aswell which did help with the nausea.
It does take time to get into yours system so don’t expect results too quickly. I suppose you will be having your bloods taken every month at least, that way if there is any problems they will pick it up quickly.
Big hug,
Lv, I x

Starburst · 28. Aug 2011, 12:37

Hello Sue,

It's normal to be nervous about starting a new medication, especially something like MTX. We've all been there and we all understand, so have a hug. ((()))

I have a positive story to share because I've found MTX a good drug for me. I take it before bed and the side-effects aren't so bad. Keep it in mind that the side-effects often get better as time goes on. The first few weeks, I felt very tired after methotrexate day and a bit sickly but now, I have very few side effects. Although there are some common ones, we don't all get the same sideys, so keep that in mind.

That's fab you have a rheumy you like. I really think it makes all the difference.

If you have any issues, please don't hesitate to post. I'm sure between us, we can manage to offer some reassurance and advice.

Take care. xx

Rhyscous · 28. Aug 2011, 13:10

Hey, im 16 and was born in southend aswell

but i moved to colchester about 3 years ago, anyway, i was diagosed with RA about a month ago and am on MTX, Steroid tablets and diclofenac, And touch wood its going superb for me! Im going to be on my 4th dose of MTX This friday, it does take a while for it to work, but hopefully you'll get on fine with it. The only time so far ive felt ill has been when i was taking Diclofenac without a stomach protector, but now i have that everything is so far going smooth, Dont be scared of it, its a brilliant drug and will help alot!

Rhys x

Ankyspond · 28. Aug 2011, 13:22

Hi,

Your allowed to frustrated, nervous, angry and many other emotions that's what arthritis does to you.

I am on methotrexate and like we all have read the horror stories before taking it, I have been good with no side effects to be honest so don't panic too much. If it's not the right drug for you then there will be something else they can try. I was on meth originally but it didn't work on it's own for my Ankylosing Spondilitis so am now on anti TNF meds (which are scary as well) and also back on meth it's just about getting the right combination.

Now as for any tips I always say the same thing really and I hope others agree, get yourself a good rheumy team (which you have), make sure you have good family and friends support, listen to your body (I am not good at this always push it to far), rest when you need to, keep active, try heat the microwave wheat bags are great and lastly try and stay positive.

That doesn't mean that if you need a moan or ask a question give us a shout in here as you will find the most amazing support from the most amazing people on here I know I have.

Hope you start feeling better soon and hope to see you around the forum. Xx

Ankyspond · 28. Aug 2011, 13:23

Rhyscous wrote:

Hey, im 16 and was born in southend aswell but i moved to colchester about 3 years ago, anyway, i was diagosed with RA about a month ago and am on MTX, Steroid tablets and diclofenac, And touch wood its going superb for me! Im going to be on my 4th dose of MTX This friday, it does take a while for it to work, but hopefully you'll get on fine with it. The only time so far ive felt ill has been when i was taking Diclofenac without a stomach protector, but now i have that everything is so far going smooth, Dont be scared of it, its a brilliant drug and will help alot!

Rhys x

Hi Rhys,

I am so glad to read that you are getting in ok and you seem so much happier than your first post. Xx

Rhyscous · 28. Aug 2011, 13:28

Ankyspond wrote:

Rhyscous wrote:

Hey, im 16 and was born in southend aswell but i moved to colchester about 3 years ago, anyway, i was diagosed with RA about a month ago and am on MTX, Steroid tablets and diclofenac, And touch wood its going superb for me! Im going to be on my 4th dose of MTX This friday, it does take a while for it to work, but hopefully you'll get on fine with it. The only time so far ive felt ill has been when i was taking Diclofenac without a stomach protector, but now i have that everything is so far going smooth, Dont be scared of it, its a brilliant drug and will help alot!

Rhys x

Hi Rhys,

I am so glad to read that you are getting in ok and you seem so much happier than your first post. Xx

Hey, well im certaintly alot better than i was 6 months ago, things are starting to look up, time for me to start helping other people on the forum now, this forum really is brilliant

rivermum · 28. Aug 2011, 13:39

Wow thank you all so much for taking the time to reply to me, I really appreciate it!

I feel a bit better having read your comments. Unfortunately I can't take any nsaid's as I only have one kidney, so the rheumy is trying to sort out an exciting cocktail for me! She has given me folic acid as well so hopefully that will help with any nausea.

Thanks again, and hope you all enjoy the rest of this beautiful sunny Sunday

xx

Rhyscous · 28. Aug 2011, 13:43

Yes folic acid helps alot aswell, where abouts in southend are you?

barbara12 · 28. Aug 2011, 14:01

Hi
Sorry I cant help, but I just want to wish you well with it, and I will have everything crossed for you.

valval · 28. Aug 2011, 14:54

not sure if i remember right but some one said suck an ice lolly to help stop the sickness but could be wrong often am lol good luck sure will be ok

madwestie · 29. Aug 2011, 02:52

Sue, I wanted to wish you well with your first dose of MTX.
I have been taking it for 3 years now and have not really been troubled by any side effects.
I read a post that said sucking ice was good for sickness or if you like them ginger biscuits (or better still preserved stem ginger yum) are go as well.

Try not to worry too much you will be well monitored while you take the meds.

Tracey

frogmorton · 29. Aug 2011, 04:02

Dear Sue

Don't be scared we will hold your hand!!

All will be well. You will be glad you were brave and things will start to improve for you.

GREAT to see you posting and helping others Rhys

...Sue if you look at his 'old' thread it will give you inspiration for certain.

AS for the rheumatologist...you ARE her equal..it's your body!! Great that you have such an excellent one and cross everything that you do really well on your mtx.

Love and hugs

toni xx

DebraKelly · 29. Aug 2011, 04:28

Hi Sue,

I have been on Meth for about a year now and I have to say its a great drug. There are a lot of things that I wouldn't be able to do if I wasn't on it.

The only side effects that I have experienced is feeling a bit sick from time to time and my urine turning orange! :eek: Other than that I have no side effects at all.

I'm sure once you start taking it after a few weeks your fear will be gone.

dreamdaisy · 29. Aug 2011, 06:41

I've been on it for years and, if it helps you, I am sure you will gradually lose your reservations because the feeling better bit must be worth it. Be conscientious about the regular blood tests, they are there not only to pick up trouble but to measure the success of the drug. Good luck with it, I hope it suits you and I hope it works for you. DD

PS I am on sulph too and that turns my urine a lovely shade of Lucozade.

prefabkid47 · 29. Aug 2011, 07:46

Hi Sue

You hear all these horror stories about the side effects of mtx,but it certainly doesn't follow you are going to suffer these.
I have been on mtx (12.5mg weekly) for several years with no side effects. I take mine before my evening meal the same day each week and follow this 24 hrs later with the folic acid.
Hope all goes well.

Ron x

rivermum · 29. Aug 2011, 10:51

Thanks everyone for your support. I feel really sick, tired and have a terrible headache....but as a 41 year old mother of 4 its how I feel most weekends after vast amounts of wine anyway!! (not that I can drink vast amounts anymore, but hey ho!)

Rhys I live in Hockley and am under Dr Borg at Southend, she's fabulous. I'm glad you sound so positive

Have a good day everyone x

Colin1 · 29. Aug 2011, 16:33

Your worrying over nothing it does take a while to start working but just give it a go.
Colin

lindalegs · 30. Aug 2011, 07:01

Side effects do tend to settle down but you can always get an antimetic (anti-sickness) from your GP to help with the nausea.

It should get easier and if it works you'll be really glad you put up with the rubbish in the beginning.

Starburst · 30. Aug 2011, 07:03

Sorry to hear you're feeling a bit under the weather. I took an anti-sickness tablet (cyclizine) for the first few weeks which really helped. Side effects definitley do ease up after a while, so hang in there. Make sure you sleep lots. xx

frogmorton · 30. Aug 2011, 09:26

Well done you!!

Congratulations for taking the first dose

The only way is UP!!

Love

Toni xx

dreamdaisy · 30. Aug 2011, 10:56

I hope you are feeling better today, rivermum. Do you have a meth booklet in which to record your blood test results? I was eventually given one after a couple of years!

I do find it a useful record of what's what. DD

rivermum · 30. Aug 2011, 11:12

I feel a lot better today thank you! Dreamdaisy, I do have a booklet, but the doc says I don't need to record bloods as its all done online....so why I have the book I don't know!

Still onwards and upwards!

tillytop · 30. Aug 2011, 12:49

Hello Rivermum

Glad you are feeling better today. Re the blood tests book - I think it is definitely worth recording your blood tests, or at least getting a copy of the results from the doc. Over time you will get to understand them and you may find it helpful, as I do, to know what it actually going on inflammation-wise and whether the blood results tally with how you are feeling. Also, I use it as a double check because I know my GP is very blase and doesn't really look at the results. There have been a couple of times when I have seen that things aren't as they usually are and have flagged it up to the rheumatology dept for advice.

Hope the meth works well for you.

Tilly xxx

stickywicket · 30. Aug 2011, 14:16

I'm with Tilly, rivermum. My Gp's really keen on the blue book and, even if they can access records online, it's handy to have if you're going abroad.

At my health centre I've to hand it in every time I ask for a prescription of DMARDS and it's updated. At that point, if they feel I've left it too long between blood tests (Consultant says 3 months: GP doesn't like it to go over 2) they let me know I should book one.

Starting methotrexate tomorrow and really scared!!!

Comments

Categories