Getting frustrated with lack of treatment

So I'm off the sulfasalazine after 6 days. I was promised I would be called back today with a decision on what to do next. Needless to say, no phone call. Now it will be next Monday before I can try and call them again. I know my case has been discussed. All I need is the result of it so I can get going with whatever they've decided now.

I feel so frustrated as since my diagnosis in September the disease has progressed quickly and I haven't been able to tolerate the drugs. There have been lots of delays whilst they consult each time. I'm just so fed up as all this delay means I'm now off work

7 Replies

  • That's a shame- can your gp not give you a steroid jab?

  • Had one in September and one in December. Unfortunately they don't work for me

  • They don't work for me either. I have to have prednisolone which is in tablet form. My clinical nurse has sent permission through to my gp before now for him to be able to prescribe it for me. Another time, my clinical nurse has sent a prescription through to the hospital dispenser where I've picked it up.

  • I failed on Methatrexate and Sulfasalazine sode effects were horrendous last year. Its taken them 9 months to get me on to biologics. Had first injection on Thursday but now I have to get off Prednisolone by reducing it weekly but its really wiping me out. You will get there in the end. If you can google biologics and if you think they might work for you ASK for them. They are expensive so they try not to give you them. According to NICE guidlines you have to fail on two other drugs first. Hope this info helps you. Its a slow battle but we Must try to win it.

  • I think they are either going to probably tell me to do it again and put up with the side effects or try me on the one beginning with lef something. My area you don't get biological unless you are years in to the disease and nothing is working anymore. I'm off work and my toes are so swollen they are out of shape. I will be trying to call them again on Monday

  • I don't think they will put u back on the ones you have just come off u can refuse if there no good for u I was first put on sulfasalazine was on it for 4 months an they made me feel so Iill an confused not right then I was told to reduce the amount tried that an still felt really ill an they now have put me on hydrochloride 1 tablet a day 3 months not really making much difference to my swelling an pain added another half tablet so now on one an half an seems to be helping either that or its just not active at min am not sure u do however have started getting teeth problems not sure if this is the condition or meds. You will get new meds an hope they help you x

  • Hope so. Have already tried hydroxycholquinine. Allergic to that too. So at the moment I've been unable to tolerate any of the first line DMards

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