Need help with methotrexate

paddyw

Hi, could you please help me,i go tomorrow to the hospial,Dr will want me to go on Methotrexate again,said no last time as i am VERY frighted of side effects.Ido feel very ill at times with my RA fluie cant walk lot of times hands bad!.Please dont think bad of me but really frighted.This is a girl who has all on taking pain killers but have to now.What can i expect on this drug?Please help- this seems bigger than me at this moment in time Silly as i say because i am bad. Any advise welcome PaddyW

theresa4

Hi Paddyw

Imagine a woman who cannot stand up without help, is crying in pain and arguing that no way would she have a depo steroid in her backside to alleviate her system she knows what it will do to her body.........

now imagine 4 years later that same woman
"please can i have a depo please ......."

Yes these things are not great for our bodies but as I realised without them we have no life at all we spend most of it doped up crying or sleeping (or at least attempting to sleep)

For me I didmt think methotrexate was doing anything for me I wasnt better but when I came off it well I didnt know what bad was.

What Im getting at is nothing ventured nothing gained and even if it only gives you a bit of a relief its better than none and you could be one of the lucky ones who it really helps. Only you know when youve reached the point of no return when you will say yes to this.
Ive been on it 4 years with no ill effects to speak of really.

Hope this garbled mess helps a bit.
sorry did forget to mention I inject MTX and sleep it off for the day as I feel really yuck but one day out of 7 better than nothing
((()))

stickywicket

You ask what you can expect from methotrexate, Paddyw. I can only give you my own experience but I've been taking it for over ten years and the only side effect I ever get is that occasionally I can have a day when I feel very tired for no obvious reason. It's always the day after I take the MTX or the day after that. That's it. Nothing else. And, in that time I've had a THR and a Knee Revision.

None of us like taking strong meds but the effects of not taking them can be just as severe, or more so, than the effects of taking them. You pays your money and you takes your choice. Hope it works as well for you as it does for me.

DebraKelly

I have been on Methotrexate for about 2 years now.

The only thing that I have noticed is occasionally feeling a bit yucky the next day for a couple of hours, but it doesn't last long. I haven't had any side affects other than that.

If it wasn't for the Methotrexate I would be in a huge amount of pain, so I would say its worth it to take it, but you need to give it time to work.

I didn't get on the right dose until about 6 months into my treatment.

Unfortunately, tiredness is just a part of living with Arthritis, whether you take Methotrexate or not it won't really make a difference.

Hope this helps.

paddyw

Thank- you so much for your replys.Its always good to chat to people who are in the same situation.It really does make me feel better knowing that not many of you have had bad side effects Does any one take folic acid as well for side effects?You really are a great bunch of people Thank you Paddy w Pat

stickywicket

Whoops! Should have mentioned that, Paddyw.

Yes. Always have done. Took it this morning, in fact. One 5mg tab for me two days per week. I've been on 22.5 mgs of MTX but am now on 17.5. I think how much Folic Acid you take seems to depend on the guy prescribing it but I've always been OK with my dose.

dreamdaisy

I've been on injected meth for some time now and can truthfully report that I only rarely suffer nausea and the occasional bout of tiredness. True, I feel a lot better in myself if I miss it for any reason so perhaps it pulls me down more than I realise, but I have to have it to support the anti TNF treamtment I am taking, so take it I do. If one reads up on the side effects then yes, they are scary, but they are not a guarantee that one will have them. I also take the FA, I didn't for years (it kinda slipped through the net) and I can honestly say I have not noticed any difference with taking it. I wish you well and I hope you find that it helps you. DD

cat75

Hi, I don't usually reply in this section because I've only recently been diagnosed but I was started on methotrexate straight away so I didn't really have time to hear about any horror stories, I noticed a difference within a couple of weeks apart from the groggy feeling the day after I,ve had no ill effects I take folic acid 24hrs after the methotrexate. I take the methotrexate on a Friday night as I don't work on a Saturday. Hope all goes well for you, I think you just have to have a bit of faith in the experts, they do monitor you closely aswell. Good luck

Catherine

carola

Hello

Have you been on Methotrexate before?

Why are you worrying about the side effects so much? Have you had a bad experience or read the POSSIBLE side effect leaflet?

Remember that the leaflets HAVE to list all possible side effects however the side effects are not written in stone that you will experience them.

We are all different and react differently.

I was on Methotrexate for over a year and every so often felt a bit sicky the day after and tired - that is all.

Whenever I take my meds I always say to myself that I will be positive and that it will work.

Try not to stress yourself out as that just makes you feel worse.

Relax and think positive if you start taking it as you never know, it may just well work meaning less swellings, less pain and more quality of life.

Good luck and keep us posted.
Carol

princess935

Hi hun, not been on it myself, but my 5 year old son might be starting it soon, and at first it was awful, the thought of my son starting such a harsh drug, but then weighed up if he doesnt have it.

Give it a go, i understand that not everyone gets side effects and thos who do it is mild.

Wishing you luck x

prefabkid47

Hi Paddyw

Like all of us can only speak on own experience.Have been on methotrexate (12.5mg weekly) for about 7 years (for RA in my ankle and hands) and has given excellent control with no side effects.Have blood tests every 4-5 weeks,so is closely monitored.

Ron

williamlargs

Try not to panic. I have been on meth for almost a year now. It took 3 months before I could throw away the anti inflams (diclofenic). To be honest I wish I had thrown away the diclofenic sooner as I am now being treated for stomach inflamation due to taking too many of them last year!

As far as the meth is concerned it has helped my ra enormously. I am due back at the rheumy next month and I am hoping he may drop my dose down from 20mg.

good luck

tillytop

Hello Paddy

I do understand why you are scared. Starting any new drug can be scary - I've been doing this for years now and I still feel nervous when I am due to start something different. But the way I deal with it is to tell myself I will give whatever it is a try for, say, 6 months and, if it doesn't work for me, I can always stop. I don't necessarily tell the consultant that, but it makes me feel more in control of the situation. I am currently taking meth for the second time. First time round, I couldn't cope with it, even at low doses, but I am now taking 20mg weekly and, although I do struggle at times with nausea and tiredness, certainly not every week and it definitely helps the RA. I think that if you don't try it, you might be missing the chance to feel better than you do now. But, if you really don't want to take mtx, it might be worth talking to your consultant about your concerns and about alternative meds. I don't know what else you have tried but there are lots of meds out there - I know, cos I've taken many, if not most of them over the years! :roll:

Will be thinking of you tomorrow. Please do let us know how it goes if you feel you can.

Love Tilly xxx