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Medication frustrations!

dibdabdibdab Member Posts: 1,498
edited 8. Dec 2018, 15:23 in Living with Arthritis archive
Some of you may have read my post about changing meds to attempt to get better control of the RA- and so the saga continues. :o Lat week after my 6 monthly review it was suggested adding abatacept to the current trio of Sulphasalazine, plaquinel and leflunomide.

Well the abatacept idea was short lived. I had a phone call from a really sympathetic and caring rheumy nurse manager at 6.15 pm last night! She told me the consultant has been reviewing my past bloods etc and now thinks the abatacept would be too risky given my neutraphyls keep dropping below the minimum recommended level and leave me open to more serious infections. So potentially they'll also stop the leflunomide- but no suggestions as to what might follow. To say I'm frustrated is an understatement. :roll: The nurse was so kind, and worried about how I'm coping with ongoing inflammation and pain in my hands and wrists, but as yet there are no ideas beyond pulling the leflunomide and increasing the sulphasalazine- but that gives me tummy problems and a really sore mouth.

Some days I long for just a week of no pain, and try desperately to remember how simple life was before RA and bronchiectasis became my norm...….but maybe it's better to forget that and focus on the positives of being surrounded by caring friends and family and supported by a medical team that seem genuinely to care about me as an individual. And of course crossing my fingers(if only I could, but sadly they don't bend much anymore!!!!) for a better solution soon.

Sorry for the moan, but at least you lovely folks understand the frustrations.

Deb xx



  • stickywicketstickywicket Member Posts: 26,005
    edited 30. Nov -1, 00:00
    Oh alas we do understand, deb. It's a pain, isn't it? Or rather a lot of them. I've been very lucky with meds. I do hope they can find something soon that will help and not cause other problems. You must be heartily sick of the whole business.

    I shall place at your disposal the two of my fingers which keep crossing of their own volition and have to be manhandled (womanhandled?) back to their rightful places. I've never found a decent use for them before now. I sincerely hope Santa will bring you a decent new med christmas02
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dibdabdibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Thanks Sticky. This forum is something really positive because we all understand , at least in part, the issues and frustrations of living with dodgy joints and all the associated nonsense. And in the process, at least we can also feel as if we can, in some small way, support others who are struggling.

    Deb x
  • dreamdaisydreamdaisy Member Posts: 31,567
    edited 30. Nov -1, 00:00
    I had tablet meth, lef, sulph and cyclosporin before I was let loose on the anti TNFs but this was some time ago and I have no idea how (or if) things have changed on the DMARD front in the intervening years. I do recall the various setbacks I experienced meds-wise before I joined here, it seems that we need to take more and more in our ever-decreasing strides as we try to live with this blasted nonsense. :x DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • StarburstStarburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Oh Deb, please don’t apologise. Firstly, that wasn’t even a moan and secondly, even if it was a moan, it’d be understandable. You’re in a tricky predicament. I’m in a similar position where I keep getting infections and we are trying to balance control of my RA vs infections. It’s a balancing act and we don’t always get it right. Sometimes it’s trial and error. If sulpha gives side effects, is there another DMARD that’s less harsh but still enough to keep your disease under some level of control? Leflunomide stays in your system for a while, so it may be impacting on your bloods. I’m sorry I can’t be of more help but wanted you to know you’re not alone and we are here for you. X
  • dibdabdibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Thanks Starburst-that meds v infection balance is so difficult, I hope yours gets sorted soon too. It's just so frustrating that there isn't a straight forward path , that each med doesn't deal with one disease without triggering lots of other stuff.

    DD, maybe your computer knows we're all wobbling along on a rickety rickshaw struggling to stay upright! :oops:
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