consultants/ meds/ das

consultants/ meds/ das

Hi want some feedback on good consultants within glos, worcs, hereford , brsitol. swindon area. can people also tell me of (1) any exepience of gold injections, blood was detected in my urine after test dose..... and (2) has any one had expeeince of leflumolide (arava) good or bad this is to help one sick bunny off work at moment bo ho. any help/ helpful comments appreciated.

and (3) Has your consultant discussed your das score with you ta.

Thanks in anticpation

8 Replies

oldestnewest
  • Morning!

    Can't help with consultants in your area I'm afraid, but I have had both gold injections and Leflunomide in the past.

    I went onto gold injections after coming off the methotrexate, and it really did make a difference I felt so much better but then developed a rash so had to stop taking it.

    I was also on the trial for Luflunomide and that too was good and I remained on it for a few years before it lost it's effectiveness against my RA and I was then moved onto Anti TNF's as I'd been through most of the other drugs.

    I hope they manage to find something suitable for you, it can make such a difference :)

    Jo.

  • Sorry I am in Devon and can only speak for this lot down here. I haven't had gold injections either,so not much use really am I? Nothing new there I hear them say... I am only a puppy really when it comes to to full blown RA having just had my first godawful bout or flare or flair... how's it spelt? I expect someone will help. I have only seen my consultant once for 10 minutes last October when he informed me I had RA. My nurse is brilliant but I had a delay of 2 months between diagnosis and my first appointment with nurse for the Methotrexate. I have seen her three times now and she took my DAS the last two times. I do hope you get sorted out soon Alison. I know when i was really bad I felt like death, or dying, or something along those lines, and it is so frustrating not getting anything done immediately, everyone seems to want to just sit back and wait and see what works and you have to give everything so much time to get going. It's blooming awful. Look after yourself gal x

  • Hi Alison, sorry your not feeling well. As you know my hospital is great concerning my RA I have no complaints. Gold injections I never had my consultant said my RA was to far advanced and needed to try something else that's when I was one of the ones to try the new Anti Tnf's (that's going back a few years now) As for the DAS score mine is done every time I see my nurse on the research unit for RA. In short they add points given for joints that are very sore and if that comes out to high am then told I may need to change treatments as it's indicating that it's not working the way it should.I do know that NRAS do a booklet on the DAS score which will explain it better to you, give them a call to request one.

    good luck

    mand xx

  • thanks l;adies lets all get partying this afternoon xx with tricia

  • I'm not in your area but have tried leflunomide. I was on Sulfasalazine as well at the time, which wasn't suiting me - so we added leflunomide. I got really bad tinitus from it, which meant I couldn't sleep. It wasn't working either so I'm now just taking one tablet rather than the 2 a day - the tinitus has reduced slightly (it was like hearing jet aeroplanes all the time!) - but I'm now on Humira and allowed to drop the leflunomde slowly. Only 2 doses in on the Humira so I don't really know if its helping or not yet. Last weekend joints all suddenly swelled up.. but it hasn't happened this week yet!

    Watch out when they do the DAS score as one of the nurses didn't check any of my finger joints! so first time I didn't score high enough for the humira - the second nurse did check them all - and I was very high (and they weren't as bad as the first time). If the first one had checked properly I would have got the humira much earlier. Unfortunately I wasn't wise enough to the screen the first time - then I realised all the finger joints should have been checked! My consultant would never have time to do the DAS score properly I dont think - as it takes quite a while to do.

    Hope you get sorted soon. Anne x

  • Hi Alison

    I had gold injections many years ago when my RA was moderate and they did well for me for a good five years.I can't remember the reason for changing now but I think things started to worsen and the docs looked to other treatments. My thighs were none too keen on the regular intramuscular injections though! I was bruised continually.

    Also tried Leflunomide, on its own, but after 3 months it wasn't working and I had a lot of side effects so came off that. I was recently put back on it alongside Enbrel (been on that for 7 years) in the hope it would work in combination. But it hasn't! Like Jo I too have been through most of the other drugs! Now waiting for something else pending results of anti-ccp and TMTP blood tests.

    DAS is always discussed with nurse and rheumatologist. Your DAS is a reflection of how well your disease is being controlled and provide indication of any necessary change in medication.

    What a game this is! After 23 years of it it's becoming very boring!!

    Hope something is sorted for you soon,

    Lyn x

  • they have never even discussed my das with me..., im taking my nras das booklet to rheum nusre on april24 th to see what she has to say on this matter....

  • Summer, i have no experience with gold injections never mentioned to me I was put almost straight on methotrexate and plaquinil and now humira injections, my consultant has never mentioned a das score, must ask her, she'll tell me to stay off internet & stop scaring my self, good luck finding good hosp & doc, can't help you there, but hugs to you for best treatment.

You may also like...