Methotrexate experiances : So after my reaction to... - NRAS

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Methotrexate experiances

28 Replies

So after my reaction to sulfsalazine, I have now been prescribed methotrexate

I have collected my prescription, but I'm feeling really anxious about starting, I've not been on sulfsalazine since 1st of September, would it still be in my system ? And I do enjoy a few glasses of wine

I had a nasty fall on the 15th and landed on my face the day before my birthday and my two weeks annual leave should have been in lanzarote ,so today I'm off to the dentist to get my teeth fixed

So what are your experiences on methotrexate and has anyone tried alternative therapies?

Thanks x

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28 Replies
Smelliott profile image
Smelliott

8 years with no side effects, and it has really helped! I still have the odd drink, I just keep it sensible.

in reply to Smelliott

Hi smelliot that's good to hear 8 years and no side effects and the odd drink thanks

Barrister profile image
Barrister

Worked pretty well for me but caused nausea so switched to injamd absolutely fine now.

Clemmie

in reply to Barrister

Hi Barruster ...Nausea, not sure what's worse rash with sulfasalazine or nausea with methotrexate, I suppose il have to see how I go on the methotrexate, not started it yet but a little anxious

Barrister profile image
Barrister in reply to

Yes I had the rash with sulphasalasine too. Once I started the injections there was no nausea. You might be lucky and get none. And they tend to start at a low dose so you get used to it before increasing. Good luck.

Clemmie

in reply to Barrister

Thank you, fingers crossed

Boxerlady profile image
Boxerlady

I've been on it at various doses and tablets and now injections since diagnosis last year and only minimal side effects.

Alternative therapies can't help prevent damage like these specialised medications so I'm just very grateful that we have access to them 😊

in reply to Boxerlady

I was only diagnosed in may this year ...I felt great on the sulfsalazine until the itchy rash with sulfasalazine...

Fingers crossed il be ok on methotrexate but not really feeling optimistic to be honest 🤔

Boxerlady profile image
Boxerlady in reply to

I know it's hard but it can really help if you can try to approach these things with an open, optimistic mind.

This is a great place but a lot of the members who post are struggling so you can get a overly negative view of medications; remember that there are many more people out there doing well on the very same medications and just getting on with their lives.

Brychni profile image
Brychni

Hi Beau - I am sorry I can't offer any practical advice but I can sympathise about your reluctance to start taking mtx; I'm at that stage too. I received the prescription in the post on Friday and I still haven't been to take it to the surgery!

Mostly I fear not being able to function. I do have symptoms and they are at times extreme (the pain in my feet sometimes stops me from walking properly) however, these episodes are mostly short lived and intermittent. In other words I still manage to live my life without too much interference.

I took sulfasalzine for a short time and I felt totally 'out of it' and incapable of doing anything really. I have heard that mtx can have a similar effect with nausea thrown in for good measure. Now that the children are back at school and my husband is back at work I am busy again and I can't imagine what it will be like if I turn into a zombie from medication. Basically everything will fall apart.

Are you in much pain Beau?

in reply to Brychni

Hello seems we are in the same boat,I am very reluctant to be honest not a very good experience in sulfsalazine with the itchy red rash my head felt like it was going to explode but I have had my prescription for methotrexate and have collected it😀

my feet are also hurting like I'm walking on pebbles trying to get to the sea when I was younger ,I had a fall on the 15th at work and landed on my face day before my birthday and my two weeks annual leave should have been in lanzarote so at the moment I'm still aching and bruised all over but not sure if it's my RA or the fall I would love to find alternative therapy that would help But joint damage sadly I'm starting to realize that maybe my only course of action would be to try methotrexate and see how I get on (this time) ,my pain is also intermittent yesterday my wrist was hurting might have been from my fall or my RA

X

Libluce8 profile image
Libluce8 in reply to Brychni

From experience Methotrexate will not stop the pain it’s given to prevent the RA getting worse

Brychni profile image
Brychni

to be robbed of a some sunshine is the worst thing! Just when you need it most. I'm a great believer in the restorative powers of sunshine and heat!

I'm assuming that you had symptoms for some time before your diagnosis? What made you go to rheumatology?

On a serious not about sunshine - I inherited a Philips heatlamp (the red one) and although it doesn't cure anything it's extremely soothing especially in cold weather.

in reply to Brychni

Love the sunshine and heat think il have a look into the Phillip's heat lamp

I was experiencing problems with my hands with pain, swelling and stiffness was so bad I had to get my hubby to put the washing on the line had blood test from my gp then referred to rheumatology ,diagnosed in may of this year with zero positive rheumatoid arthritis, was on prednisolone to start with( great help )then a gradual reduce and sulfsalazine dosage increased all during lockdown amazing service by the NHS

helixhelix profile image
helixhelix

MTX has been my best friend for 10 years now. We get on very well and are inseparable, we take holidays together and go to pubs quite happily. This friend has given me back my mobility, largely taken away my painful joints and encourages me to exercise.

So don’t be afraid of it.

Ok not everyone gets on with it. But there is no reason why you should be in the group that has no problems.

When I started I stopped drinking any alcohol completely for the first 6 weeks (drank lots of water instead as that is very helpful to flush it through you). Once I’d had two blood tests that showed my liver was doing OK I started to have a drink here and there. Now I have a couple of drinks with my dinner maybe 3 nights a week with no problems. What you mustn’t do is binge.

in reply to helixhelix

Thank you for a very postive reply

I'm going to give it a try it could work out for me ,trial and error I suppose ,good time to do sober october

How do you know that your bloods are ok , ? With the regular blood test

Thanks

helixhelix profile image
helixhelix in reply to

Usually when you start your get blood tests every couple of weeks, and then slowly over time it is stretched out to every 3 months.

I would really recommend you get copies of your blood tests, and keep track of the main your results yourself. For every item most results sheets will give a normal range, but these are pretty general. So it is useful to learn what your normal range is, as the trends are much more important than a single test result.

Liver is ALT and AST... people used to get a copy of this booklet which was filled in regularly and gives info about the different tests at the back. It seems this doesn’t happen as much now, so print it out and fill it in yourself.

nras.org.uk/publications/me...

Beau78 I did it the other way round and now on Lefluomide as my body did not like either. However MTX is seen as a great drug for RA and I know my body was starting to respond about week 12 and it showed in the bloods but my side effects to both were too much.

Keep positive as you need something to get you back to a good place.

Mrs-A profile image
Mrs-A

I was diagnosed in August and started taking hydroxy a few weeks ago.

I opted for the MTX injection as there are less side effects and it is more effective than the tablets.

(GP won't prescribe injections though as they are far more expensive than the tablets, so the hospital has to prescribe it.

I had my second injection on Sunday, I took it in the evening so any side effects would happen while I was asleep and (touch wood) haven't had any side effects as yet. After my first injection my scalf was very itchy and I felt a bit sick, but this time nothing 🙂

If you are on the tablets and have any bad side effects ask your RA team if you could swap onto the injections.

Brychni profile image
Brychni

I can't drink alcohol anyway, so that's one thing I don't have to worry about!

Just dropped the prescription off.

helixhelix profile image
helixhelix in reply to Brychni

Well done. Big step to controlling things so you can stop fretting.

in reply to Brychni

Well I dont drink much either but I've decided I'm going to give the methotrexate a go and even going to do sober october 😁

Well done on dropping the prescription off ,I think I've kinda forgotten how painful my hands had been before the prednisolone and sulfsalazine, starting to see a few reminders today in my hands, so needs are a must ,would love to be able to wave a magic wand x

Summerrain14 profile image
Summerrain14

I’m fairly new to MTX myself, week 8 alongside sulphasalzine and prednisolone currently. I was taking folic just once a week but had a chat with my rheumatology nurse this week and we are going to increase my folic acid to 6 days a week and will be moving over to the injections in the near future. I have not had any terrible side effects at all but do have a continuing degree of fatigue and some nausea and upset stomach so going to try the injections which will bypass my stomach. I am trying to continue to work so just need to feel a little bit more with it than I currently do. I am keen to carry on with the MTX as think I can notice some slight improvements. Fingers crossed. x

in reply to Summerrain14

Just been checking my prescription I'm on 15mg to start on the methotrexate alongside prednisolone with folic acid for 6 days ,I can cope with nausea ,a degree of fatigue but upset stomach well will have to see how I go ,might be lucky

Summerrain14 profile image
Summerrain14 in reply to

Fingers crossed you have no side effects at all and MTX is the medication for you Beau. I think long term MTX will become my new best friend with some minor tweaks.

I Hope so too ,I'm sure with a few tweaks here and there... we will both have new best friends

MTX is the gold standard treatment. It has been around for about 60 years, so plenty is known about it. People vary in their responses to it, but many have few or only minor problems. I had none, even when on 25mg. Please give it a good go. It could change your life!

Hello bacharia,I've decided to put my past experiences behind me ,and have even decided to do sober october to give MTX a good chance starting to have a few issues creeping back in my hands this week ,and I really don't want to be back were I was with my hands at the beginning of April

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