New courses of treatment offered advise please

Leflunomide-tablets Rituximab-injections Methotrexate-injections

I was doing amazingly well on Cimzia injectins but unfortunately I was very unlucky and had a very rare side-effect of pins and needles all over my body. This now means I can no longer have cimzia or any other Anti TNF drug which is very disappointing as I was doing so well on Cimza. However rather than look at what I can't have I have been given information on the three possible treatments listed above I would be very interested to hear comments and how people have got on with the with the above drugs. I have had methotrexate tablets before and they made me feel extremely nauseous for five out of the seven days so I have to admit I am reluctant to go back on methotrexate however I am told that the injections will make me feel less sick have has anyone found this the case if they've had the methotrexate tablets or the injections. I have to admit out of the three I would rather injections than tablets as tablets seem to make me feel so sick and I already take a lot of tablets mind you I suppose one more tablet would not make a lot of difference! I will await with interest your comments and advice many thanks in advance☺️

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  • Hi Sunflower

    Sorry to hear you had a rare side effect with Cimzia.

    I had 25mls Methotrexate injections for about 5 years. I was changed from tablets because, as you have already found out, they can cause nausea. I also had blackouts and dizzy spells. The only problem I had with the injections was that I would sometimes bruise around the injection site. I think this is because I injected in the morning, then got on with my housework, bending and stretching. I suppose I should have had it at night.

    I'm now taking Leflunomide. It comes in two sizes, 10mg and 20mg. I only have 10mg (used to take it with the Methotrexate). I've had no ill effects from that at all.

    Whatever you find yourself taking, I hope things work out well for you.

    poemsgalore

  • Are you finding the benefits better or the same discounting the dizzy spells of course?

  • I have just gone through six weeks of hell with methotrexate injections. I know they suit some people and it is the gold standard drug for RA but I seemed to have every side effect known to man and needed to spend half the week recovering in bed despite increasing the folic acid. I too was offered leflunomide but decided against it as it seems to stay in your system for two years, and can have the same list of side effects. I have not tried the Rituximab injections. Have decided to go down a gear introducing sulfasalasine slowly to see if any better and any help. After that it will be steroid withdrawal and ant TNF for me. Good luck with your choices. So hard. I decided to try the methotrexate injections after being really unwell with the tablets. All I can say on that front is you won't know until you try, but I pray that you don't go through what I have.

  • I have to admitt as I was so sick with the methotrexate tablets I am not happy really about trying the injections

  • I'm on leflunomide and I'm doing very well on it. I did get a lots of bloating initially but I take 2 x 10mg, one at breakfast and one at tea time and since I'm ok. I could take methotrexate at all.

    Hope this helps

  • Were you also offered Rituximab?

  • I changed from MTX Tablets to injections about 8 weeks ago because of the Nausea and so far they have worked really well not only has the Nausea almost gone but I don't feel quite as washed out the day after. Long may it continue.

  • Hi Sunflower, I inject 20mg of MTX divided into injecting 10mg one night and 10mg next night. This drug has really helped me and Doctor divided dosing like this because when I injected 20mg all at once I could hardly function the next day from being so tired. I also seemed to have a rapid heart beat. I started MTX once before, but I don't think I gave it enough time. Been on the injections now about 6 months and I know it has made a big difference. Hope this helps.

  • Thank your for the reply if my consultant does go with MTX I will certainly ask to have the dose devided with between days

  • HI there

    I had a bad reaction to Embrel and then went onto Rituximab, MTX injected and other stuff (which now also includes hydroxychloroquine) and have found this works really well. so last five years have been pretty good so hope works for you too

    all the best

    Skippy