Methotrexate

beckie89

Hi All,

I had my first rhumey nurse appointment this morning, she seemed really nice and was able to give me more answers than the consultant! :P

Interesting to find out that I should have been given stomach protectors with my naproxen, so now I've got some of those.

I've been taken off the sulfasalazine, and it has now been replaced with methotrexate, 4 tablets a week, and a folic acid tablet everyday that I'm not taking the other one.

Got to have a blood test every 2 weeks for the next 3 months, and have another nurse appointment in 6 weeks, but I suppose that will be become less frequent with time!

Just really wanted to know people's experiences with methotrexate so I know what I'm letting myself in for!

Thanks in advance!

Bex x

trepolpen

hi beckie , sounds like they got a very good plan for you & know what they are doing , myself been on MTX almost 16 years & dont have any problems taking 10 tablets a week , alot of us take it along side sulpha & other drugs

hope it all goes well for you

toady

Good luck with the change of meds, hope you get a good result from them - I am currently on injectable mtx but unlike most people I haven't ever had them in tablet form so I haven't had the exact same experience as you but I get on ok with the subcut version - bit tired but nothing unpleasant. Currently on enbrel with it as well as it wasn't enough on its own but everyone's different & there are plenty that do v well on it. All the best, glad you've got a helpful rheumy nurse.

stickywicket

Meth and hydroxy for me for about 14 years. No real problems. Just make sure you keep up with the blood tests and get your annual flu jab

beckie89

Thanks for sharing your experiences!

Fingers crossed they don't have the same side affects on me as the sulfasalazine did! :oops:

I think the blood tests are the only bind for me, it's a pain having to travel to the hospital every 2 weeks, but it's something that has to be done I suppose!

And I get my flu jab for free as I work for the NHS, so that's covered!

stickywicket

My GP's surgery does my bloods but it's so long ago that I started meth it might well be that I'd to have them at the hospital at first until they were sure all was well.

dibdab

I take injected meth with sulfasalazine and hydroxychloroquine sulphate. I get a slightly dodgy tummy but nothing I can't live with. My GP does my bloods - might be worth asking the rheumy team if it's an option- it's much simpler than trekking to the hospital.

Deb

dreamdaisy

As you are on immune-suppressant meds you should get an automatic free 'flu jab so chase that up later this year.

I tried meth tablets and got the rash so they were stopped. A few years later I was put on to the injectable stuff and so far, so good in that I don't have any side-effects (but I always feel better in myself when I come off it to get over a cold or bug). Good luck, I hope it helps. DD

mike26

hi beckie89
I also had to stop takeing sulfasalazine (lowered white blood cells count)
but so far no trouble with methotrexate started tabs then said inject form
would be more efective.
also take leflunomide tbs each day,
about to start humria inject fortnightly.
i do get very tyred thro day tho and bad diorrea.
good luck with your meds beckie and hope all goes
well for you,it might take while to settle for you,and dont forget regular blood tests..
mike26 :?

beckie89

Hi All,

Well so far I've taken this week's methotrexate and 1 folic acid tablet, I've felt quite sick most of the day, and I did struggle to keep my lunch down!

I'm hoping this is just because I'm new to the drug and my body will settle down soon!

Thanks for all the support, I'm really grateful for all the support

Bex x

Boomer13

Hi;

I had terrible nausea with mtx but it has settled down after I got used to the drug. Every time I have a dose increase or, recently a switch to injection, I seem to need a few weeks to get used to the change again :roll:

Best wishes,
Anna

DaveOB

I always took mine in the evening, my plan was I would sleep through the worst of the side affects.

beckie89

Well today I'm feeling a lot better, but thanks DaveOB i'll try that with next week's dose!

What are people's thoughts on methotrexate and alcohol? The rhumey nurse said I can have some, but not go mad obviously. Although i do enjoy a glass of wine on the odd occation!

Does it make anyone feel ill? I dont really want to make myself feel bad again, so I've been avoiding it for the last couple of weeks!

Bex x

stickywicket

Methotrexate can damage the liver which is one of the things tested for in our regular bloods. Alcohol can damage the liver too. Hence, combining the two is doubling the risk. However, if your liver is damaged you won't necessarily feel anything at all which is why the blood tests are so important.

People are usually advised to stay away from alcohol for the first few months until it's clear the ALT levels in the blood are OK. After that, the odd glass of wine etc is probably going to be OK but never miss a blood test and always check the results in the little book you should have been given in which your GP will record them all.

I have a glass most evenings (though I aim to avoid it on my meth day) and occasionally more but I'm blessed with a very good liver

I do find though that, if I have more than one glass, my joints don't like it and protest next day.

mike26

Hi
I now very rarely drink alcohol , im worried about damaging my liver.
and when im more stable i may have a glass of red..
:roll: :roll:
mike26

pot80

I have only been on it for about three and a half years ( I was 76 when I started) and my rheumatologist says that I am doing really well and we discussed at my annual review, last July, reducing my dose however since things were going well my wife and I thought that we would stay with the dose for a bit longer since it was working so well. I had a note from the consultant three weeks ago saying to reduce my dose now from 15mg down to 10mg/wk.
Alcohol - the rheumatologist has limited me to 10 units/wk. This poses minor problems at times as I keep track of my intake on a rolling week basis.
It is not worth the risk of exceeding the allowance.
I have always taken my dose with breakfast and appreciate that other people have their favoured time.
I hope that it all goes well for you and I am sure you will get it sorted.

beckie89

Well I received my next appointment to see the rhumey nurse in about 5 weeks time, and also a request and form to go and have a chest x ray.

Is this a normal occurrence when you start on Methotrexate? :?

Bex x

AnnieC

Hi everyone, just wanted to throw my meth experience into the mix!
I'm taking it easy at the mo' because I had a liver biopsy the other day. My gastro doc wanted to check how my liver is coping with meth. I've been on injections for 18 months because tablets really upset my stomach. I'm also on sulfa. If anyonealazine but only for a couple of months. I've frequently had to stop my meds for a time, mostly due to blood test results being way higher or lower than they should be. Last time I had to stop I was off meds 2 months! When I'm taking meth I feel much better than without it. At the mo' just feels like one step forward and a dozen back!!
I have Psa but didn't get a proper diagnosis until I came back to UK in 2011, was living in France before. I was just taking co-codamol for pain with the odd steroid injection for years. I'm allergic to nsaids so that's a non starter for me. Now have to wait for biopsy results to find where I go next. If anyone has had a biopsy too I'd be interested to know what happened next.
Thanks for taking the time to read this, just helps to get it out of my system!! :roll:

jojo03

Hi Bex

I've been on methotrexate since the beginning of January, and I also had to have a chest x-ray - it's a standard procedure to check your lungs before you start the drug, so don't worry. I was told to have a flu jab and a pneumonia vaccine too, which I did. I think it's all a bit scary having x-rays and vaccines before starting a new drug, but it's better to know that we're protected before we start.

I also had an appointment to see the nurse practitioner about six weeks after starting the drug, so that's standard procedure too, nothing to worry about.

I usually only have one glass of a wine a week - I've never drunk much because of the various drugs I've been on. Last Saturday night I pushed the boat out and had two glasses of wine. I must admit I felt a bit rough on Sunday, so I'll probably stick to one glass from now on!

Jo x.