Hi all, just wondering if anyone has suggestions re this. I have been switched to taking folic acid at 1mg per day, apart from methotrexate day, but still feel really sick alot of the time. The consultant said that he can switch me to injections if this doesnt help. He did say that no one should have to put up with feeling like this, so maybe I need to wait to give it time, its methotrexate day today, not taken in yet (putting it off) and fed up being in pain and also having this too. I have spent all day yesterday and most of today feeling nauseus. I had my foot clinic appt today, and was glad to get home.
Sorry to whinge, but its so hard to carry on doing everything when feeling even worse than normal.

Hi Jackie, have just taken half the dose, I cant cope with the full lot tonight x

Thank you for your replies, it helps to know others have the same problems, otherwise you feel like you are always complaining at appointments.
Doreen, I do take it in the evenings, around 7-8pm and am ok until the following morning, then it begins!!
Amanda, yes, it was a possibility that the mtx was responsible previously, but now, I feel it can only be that. So fingers crossed for September
Rose, sorry that the humira is having similar affects for you, I didnt realise that the anti-TNF drugs did that too, oh joy!!!
There was also talk of changing the drug altogether, but no mention of what that would be.
Will call for a gp appt on Monday too

Thanks Jean, I did ask about the injections, but as usual, its not up to me. He said he would wait to see if any improvement from the extra folic acid. So, its a waiting game again. At my visit in April we were considering anti-TNF, now thats been forgotten, I give up!!!

It probably is all due to cost Jean because about 5 years ago when I saw Prof Emery he recommended that I go on mtx injections. But in Huddersfield there was a waiting list due to the cost of delivery (!) but I could go to the hospital every week to have it there. Needless to say I politely declined.

It's so unfair Barbara that you have to put up with all the nausea, keep pushing for the injections.

Doreen xx

Hi Barbara

Our area only do MTX by injection if its done in clinic, like Doreen's, perhaps your area are similar.

I take Folic acid 5mg 6 days a week and have done so since first starting MTX 8/9 years ago. Although only on a low dose restart of 7.5mg MTX I was still told to stick with the same dose of folic acid. I guess I have been fortunate as I have never had the nausea problem!

You can split the dose into three smaller ones over a 24 hour period and this might be a little easier on the stomach, especially if followed with a couple of ginger biscuits but avoid hot drinks for a couple of hours (can't remember why ), seems to work for me!

Good luck Barbara

Lyn x

Hi Barbara
Just to say, I hope your feeling a bit better, I swapped to mtx injections because the tablets made me very sick and awful headaches..I still get a bit nauseus but my GP prescribed domperidone to help. Dont give up, keep on until you get the treatment you deserve! Thinking of you
Love Ceri xx

Hi BarbieGirl,

I'm sorry to hear that you are still playing a waiting game with regards to your medication. April does seem like a long time ago doesn't it

According to the girls here on the helpline they seem to think that not only is there a bit of a post code lottery on the availability of MTX as an injection but also an extra post code lottery in relation to specific doctors and their thoughts on the subject (possibly cost related). Some hospitals seem to only offer the pills and never mention injections at all - it is only when patients read up on the subject and go back to an appointment armed with information that the subject comes up and injections are discussed as an option.

It sounds like you are trying a new routine for now, which hopefully will work for you. If it doesn't then at least you are armed with all of the wealth of knowledge that your fellow forumites have given to you. There is definitely a huge number of personal anecdotes, stories and experiences available right here which can only be beneficial in your quest to settle down into a more manageable routine.

If you do need any help or specific information on MTX or any other drug then please do call the helpline and the girls there will be only too pleased to point you in the right direction – they are much better informed than me I assure you.

Good Luck

Katy
x

Hi

Sorry to hear your med's are upsetting you, this disease is bad enough without having to feel ill from the drugs


I also had to switch from oral mtx to mtx by injection, I didn't suffer with sickness, I just kept getting an upset stomach! I also had to stop sulphazine (sorry think I've spelt that wrong), I appear to have a very sensitive stomach now when it comes to taking tablets. I've just started taking Hydroxychloroquine since Thursday, so far Im ok but next week i have to increase the dose, fingers crossed!


Its not fair is it, we take something to help us and it causing other problems.

Hope you feel better soon

Take Care
Lou xx