Is anybody total free from pain and fatigue?

Havn't been on line for a bit I've just felt so rough! I've had UTI for aprox 6wks just cant get rid of it, but fingers crossed next test will have seen the last of it. Went for steroid injections yesterday these were cannceld due to infection but off on hols soon and don't want to be a burden to the friends i'm visiting. The nurse that was doing injection said I shouldn't need them if RA was under control!! I'm on methatrexate 25mg a week and also take hydrochloroquine sulphate but my tum can only take 1 a day! and i had sulfasalzine but tum played up again, (vomiting an felt sick all day!) have an appointment on 28th june (when i've had 10days of sun and relaxation) so hope some one listens to me.and helps me, but please tell if anyone is total free from pain and fatigue and that i'm just feeling sorry for myself!

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  • I don't have much RA just now at all - but the tummy and the drug side effects are exactly as you describe. Poor you. I do hope you recover for your holiday but not so much that you bounce into your next appointment perhaps? Have you thought about switching to injectable MTX? It's more efficiently absorbed and therefore significantly more effective so you might be able to take a lower dose. I've never made it up to over 17.5 so I'm impressed that you've got up that high. I've just had to come down to 15mgs again thanks to tummy pain and nausea but I was told that 15mg of injectable mtx = 25mg of oral so might be worth a thought?

    And the answer to your question is that yes I've felt totally free of joint pain - but not fatigue and not tummy pain - it's like a tight rope all the time isn't it?XX

  • i do inject my methotrexate as i couldnt cope with oral i think i'm on highest dose now so don't know what happens next! will let you know xxxxx

  • Ugh you are brave - I just can't think about going over 17.5 even if my RA worsens. I find the nausea totally defeating just now and had the same issues as you over the Hydroxy ie one tablet a day only because of sickness. Now I'm off it completely and it doesn't seem to have made a jot of difference 9 weeks later! I do hope your UTI clears up and you get your steroid injection. I can't take steroids as they make me go bipolar and GP won't prescribe them now so it's a good job I don't need them. But I am living on Ranatadine stomach protectors and having to be very careful what I eat while waiting for a transabdominal scan so glad I'm not having anymore than 15mg MTX to think about just now. I am wondering about asking to shift to Leflunomide but apprehensive as the MTX does at least give me control over my joint pain. I don't see my rheumy until August so am having to just be patient and hope I don't start flaring again on the lower dose of MTX. Do let me know how you get on and what's next for you and have a lovely holiday. Tilda x

  • I have been very lucky when I hear about what some of you have gone through. I was on MTX at the beginning but it attacked my liver. Eventually after a few other drugs were tried unsuccessfully I was put on biologicals and they all worked temporarily. When they did work I have to say I was completely free of pain and felt like I could jump over a row of houses I had so much energy......unfortunately, this was short lived as all three that I have been on so far eventually turned on me in different ways. I will be going on my forth drug (Abatacept) in June, all being well.

  • So sorry things are so difficult for you at the moment Fizbom.

    Although not everyone is so lucky as I was, I know from experience that pretty much pain and fatigue free is possible for some people. My experience of the DMARDS during the first 8 years or so of my RA was that most of them helped to some degree but pain and fatigue free seemed like a pipe-dream.

    .

    But, like Jeanabelle, I was almost completely free of RA pain and fatigue (for about 7 years) thanks to the biologic drugs. My limited pain during those years was caused by relatively minor twinges from eroded joints. And 8 years in to what was classified as "severe, erosive RA with a bad prognosis" I wouldn't have believed it possible to feel so well. Unfortunately, also like Jeanabelle, my first two biologics eventually turned on me too but the third is definitely working now, though I don't know if I will achieve that level of wellness again.

    I think one of the hardest things about RA is that it is so unpredictable and nobody can say how it will affect us or which drugs might help us. It sounds very much as if your current drug combination is really not working well enough for you Fizbomb and it may be that when you go to the hospital, it's worth asking whether you would be eligible for one of the biologics at this point. As with all the other RA drugs, they can work miracles for some, and do little for others but if you were given the opportunity to try, you may find you too are one of the "lucky ones".

    Thinking of you - and hope your relaxing holiday in the sun lifts your spirits.

    Tillyx

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