Scared

Last year 2015 April, I was diagnosed with RA. In May I was started on plequenil tabs. In august prednisolon 5mg was added coz plequenil couldnt work alone. In september was put on Mtx 10mg per week, I stopped Plequenil and Prednisolon. The pain subsided tremendously only for it to reappear in April this year with vegeance. In September, Rheumy doubled Mtx to 20mg per week. The pain trippled, never been this sick before, my nose got dry and developed bleeding sores. Having another appointment with Rheumy on 27.10.2016, he said I need to change meds. My next dose of Mtx is tomorrow 17.10.2016. Am pretty scared and feel like not taking the Mtx but am also confused whether it is the Mtx causing me to b sick or my RA has surpassed the limit. I am still taking Megafol tabs 5mg daily. Has anyone experienced this before or it is only me

7 Replies

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  • Lots of people are sick on MTX, and I certainly had the nose sores, sickness and mouth ulcers as well. I tried the higher dose by injection which was thought to avoid so many side effects, but eventually as it was not controlling the inflammation and making me ill with side effects got the rheumy to change it.

  • It is really a sad situation. Hope the change of meds helped you in the end. I hope I will feel better next week when my rheumy changes meds for me too. Thank you so much for your reply Oldmiter. It gives hope to share experiences.

  • I took MTX for 6 years with hair loss and nausea which I could cope with but then I started being physically sick for 48hrs a week,, needless to say I came off it and fortunately I've been on various biologics since then.

    Hope you feel better soon!

  • Thats positive. I hope my rheumy will try out the biologics on me too next week

  • Hi Jepmoo - Have you been tested for Sjogren's Syndrome (Sicca)? The reason I am asking is that I had the bleeding sores for about three years and no one could tell me what the issue was. When my GP tested me for the Sjogren's (just out of being thorough I think) and it came back positive, that was when I discovered the cause of the bleeding nose sores. They can be washed out with plain water (only lasts until they dry again), but then some petroleum jelly will help keep them moist and delay their return.

    If you do have SS, they will give you something like Pilocarpine HCL which will help tremendously (at least it has for me..) and will help with dry "other things" as well, like dry eyes, thickened plegm, etc.

    It might be the MTX, but I honestly think it is probably more likely the SS. Please let us know after you talk with your GP?

  • Yeah. I went to see GP yesterday and she said she was suspecting infection and gave me antibiotics. I havent taken them yet am just so tired of too many drugs at the moment as well. I hv been using vaseline too. I think I will ask my rheumy about the ss test. I could suffering that too. Will keep you update after my visit to the rheumy next week. Thank you guys so so much for the support. Am happy that I joined this group

  • Best of luck - when is your next visit?

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