Off mtx: I have at last come off Mtx. My. Doctors... - NRAS

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Off mtx

Carolsos profile image
19 Replies

I have at last come off Mtx. My. Doctors refused to let me order any, because I had 3 month supply still to use up and didn't order any. When I tried to. Order they refused unless I got. Another letter from my consultant saying I was still on it. I rang up rumy nurse. And explained the situation and asked can I be taken off it as I am, still feeling sick with the drug. And my doctors refuse to give me any sickness tablets. They are putting me on another new drug, but no idea what it is. It's an injection so I will see how I cope with that since the jab for mtx I got a phobia with.

I am going on the 1st July for lots of blood tests and x-rays, and should be in hospital for about 3 hours. I don't know if it is a biological or not even! But the rumey said it's a new drug, so do any of you know about a new drug with injection. It's a smaller jab than mtx. She asked how my inflation was and I said pretty bad at the moment Thanks in advance.

Carol x

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19 Replies
Mmrr profile image
Mmrr

Hopefully the new drug works for you. Great you are off MTX when it isn't suiting you.

springcross profile image
springcross

Good luck with it all Carolsos. I hope the new drug is suitable for you and does the job whatever it is. xx

Windonmyface profile image
Windonmyface

Sorry I have no info on new drugs, but I hope this one works for you. Just wanted to say my doctor finally gave me anti-nausea pills and they have no effect whatsoever on my methotrexate-induced stomach pain. Please let us know how the new drug works for you and if it causes side effects like stomach pain. I am ready to try something new.

Carolsos profile image
Carolsos in reply to Windonmyface

When I was prescribed anti sickness tablets they work, but he would only give me 14 tablets and take them twice a day and when I asked for more he stopped them and refused to give me any more. That was about 5 years ago! I have since asked for more and the reply is it's not for long time use??? We are on these tablets for long time use!!! So I have been putting up with feeling sick and being sick. I just had enough with feeling like this, also my Ra is not under control. I have been on mtx for 8 years and I gave it a good shot! Am sorry to hear your sickness did not go away with your anti sickness tablets though. Take care. X

Windonmyface profile image
Windonmyface in reply to Carolsos

Maybe they didn’t work because my “sickness” is more of a stomach pain rather than nausea. Yes, there must be something about those pills the doctors aren’t sharing with us; mine just gave me a month’s supply with only one per week. I’ve been on methotrexate and hydroxychloroquine for about a year, and still trying to puzzle out how much of my stomach problems are due to these meds and how much to my long term anxiety disorder that manifests in my gut. My gut is definitely worse on MTX. At the same time, it works well on my RA. Does anyone know of a drug that is easier on the stomach??

medway-lady profile image
medway-lady in reply to Carolsos

I had anti sickness for Vertigo and was told only for 3 days as longer affects the brains balance. I was ok with that but isn't there anything else that can help? If I were you I'd ask about LEF as it worked so well for me even the AZA and Benapli doesn't work as well but sadly its no longer for me.

MJSlide1958 profile image
MJSlide1958 in reply to medway-lady

That's good. What is LEF?

medway-lady profile image
medway-lady in reply to MJSlide1958

Lefludamide in my view it was a lot lot better than MTX.

MJSlide1958 profile image
MJSlide1958 in reply to medway-lady

Thanks

medway-lady profile image
medway-lady in reply to MJSlide1958

I should have said its also called Arava and a pill.

MJSlide1958 profile image
MJSlide1958 in reply to medway-lady

Thanks, I have never heard of this pill. Is it for RA patients? Is it used on its own or with a Biologic/BioSimilar??

Carolsos profile image
Carolsos in reply to medway-lady

I am on leflumomide and hydro already.

Poppyesterhazy profile image
Poppyesterhazy in reply to Windonmyface

Hi, do you have methotrexate tabs or injections and do you take folic acid? When I was on the tabs I had awful stomach pains for three days after taking them. I changed to injections and it was a game changer. No after affects, no pains just keeps the RA under control along with a biologic. Also take folic acid 6 days a week and no nausea.

Windonmyface profile image
Windonmyface in reply to Poppyesterhazy

Not sure if your question is for me or Carolsos, but I do inject and also take folic acid 7 days a week. Since switching from the tabs, my stomach distress is largely confined to nighttime, which is “ugh” but better than all

day AND night!

stbernhard profile image
stbernhard

Whatever the new drug is, I hope it's a good one for you and will give you some relief. Lots of hugs.

Sheila_G profile image
Sheila_G

I don't know of a new drug, maybe she meant new to you! Anyway, I hope you tolerate this one better than mxt. It does sometimes take a while to get the right drug for you as we are all different. Good luck. x

Garnacha profile image
Garnacha

Hope whatever the new drug is works for you. Re sickness tablets I've been prescribed cyclazine since February, I just reorder them & take 1 3 times a day, usually for 4 - 5 days x

You should be told which drug you are being put onto- this should be automatic. Methotrexate was not suitable for me - it made me very nauseous and I could not cope with it.

MJSlide1958 profile image
MJSlide1958

Good luck and please let us know which injection/medication you are given?

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