GP Tells me Hydroxy is not working, Mattcass

After 20 weeks my GP has told me the course of Hydroxy i am on is not working, Then indicated to me that there is a final option for me that involves a drug that is applied intravenously that by passes my lungs but would go no further in the discussion, This was mentioned a way back when i was very ill between the two of them. Anyone heard anything about what i am talking about, Mattcass

18 Replies

oldestnewest
  • Doh. He shouldn't have brought up a conversation he couldn't finish ! Typical man lol, no u need to talk to Rheumy I think .., again xxxxx

  • Hi A, The Rheumy is not involved in any part of my treatment now big fall out months ago,Matt

  • Another test and try?.

    BOB

  • Hi Bob,Thank You, I will try any new tests that come along they may not work for me but if they work for someone else that's good as well, Matt

  • Well at least now you have confirmation of what you have been thinking. Rheumy next stop xxx

  • Hi Miss, Thank You just got to find a new one. Matt

  • Matt, You really can't make a decision based on one GP's opinion, You reaLLY SHOULD SEE THE rHEUMATOLOGIST, TO HELP YOU WEIGH ALL OPTIONS. i AM WONDERING IF GP IS SPEAKING OF ONE OF THE BIOLOGICS THAT ARE ADMINISTERED BY INTRAVENOUS..tHE ONE i AM MOST FAMILIAR WITH IS rEMICADE, BOTH MY SISTER AND i HAVE HAD THAT LONG TERM, SHE STILL IS, BUT i OPTED TO GO TO ONE OF THE INJECTABLE BIOLOGICS, SINCE MY VEINS ARE VERY DIFFICULT TO USE FOR IV'S

    Oh good grief! I just looked up and discovered I must have hit the caps lock with my little finger again I' m sorry...Would you mind if I leave it like that? I'm really not yelling at you.!

    But, please do see your Rheumy for a complete consult! Good luck, I wish you the best . Loretxxx

  • Hi Loret Thank you your typing is like mine readable it what's in between that counts. I have severed all ties with my Rheumy Consultant, Will read more into Remicade and pick up some info on it. Will keep you all updated, Matt

  • Hi Matt

    On the NRAS website is a publication all about biologics and it names which ones are given intravenously. The only thing I'd flag up is that a biologic drug has to be approved by your health authority, and fir that to happen, a relevant specialist has to make the application on your behalf. I'm not sure how you can achieve that without the involvement of your rheummy clinic? You'd also need a DAS score of above a certain threshold twice a month apart, again it is the rheummy service that carries this out. These are the hurdles to get across under the NICE guidelines, which are also described in the NRAS booklet

    Best of luck

    Ronnie

  • Hi Ronnie, How are you keeping, I am in the process of trying to join another Rheumy team. Mattcass

  • Hi Matt

    I'm waiting for the funding approval to go onto a biologic called RoActemra, it's the infusion one that Harry Hunt is on (you may have read his encouraging blogs?). When I last spoke to my Rheummy team about 10 days ago they hadn't done the application yet, irritating as I saw them on 2 October and it'll be circa 10-12 weeks to get the approval once it's gone in

    I'm in a flare that's been going on about 6 weeks but this time it's in my spine, quite a nasty one. Had some time off work, worked from home for a bit and now am gradually going back in. They've got me a new chair which seems good

    Having started my RA journey in private healthcare, I'm struggling with the delays and difficulty getting hold of people now I'm in the NHS, but I know you know all about that :-(

    Good luck with trying to get a new team

    All the best

    Ronnie

  • Hi Ronnie, Thank You hope you don't have to wait the full waiting time, I had a bad time recently only just got my hands and wrists back, Then i get hit with RA straight into my hip i was worried at first thinking a hip replacement that is the last thing i need or any operation off any kind they have told me, Chest, Rheumy, GP, it's the only thing they have agreed on. Matt

  • Matt, my sister a fellow RA sufferer has infusions of Remicade with much success. She lives in different county to me and has always found it easier to get better treatment than my county, grossly unfair that such differences exist around the country.

    You have to be under care of rheumatologist though, so if you are finished with yours you will have to find another good one. I was receiving bad care from a rheumy and with my wonderful GP's help and guidance have now been referred to a very kind and extremely knowledgable rheumy, although I now also must travel some distance to see him. Go on line and check out rheumatologists, read reviews etc (Dr Foster good site), many NHS hospitals now also have patient opinions on line, helps when looking for good consultant in any speciality.

    Hope you get help soon, lynda x

  • Hi Lynda, Thank You I am waiting on a reply from the same hospital that my Respiratory and Transplant team are, about me joining their Rheumy team.Matt

  • Hi mattcass

    I replied re the steroids on the had enough post let me know if you don't see it, I am not that good at navigating round here yet. On another note can you see another rheumy at a different location, as I understand these days you have a say in where you can get your treatment. I do know steroids are used for chest problems but obviously you need to get a medical opinion. I do hope you get some success somewhere.

    Lorraine x

  • HI Lorraine, My Lungs are passed the steroids stage they are to treat my RA and are the only med i can get to cut down the Flare ups that attack me for weeks on end, Thank You, Matt

  • My sister has autoimmune lung disease (it probably has a posh name but I don't know it) and is being started on a biologic called Omalizumab, I'v not heard of it but apparently it is used for people with autoimmune lung problems, maybe that is the drug they were talking about (though it is an injection so maybe not)? xx

  • Thank You any named drug gives me something to look up and check it out but I believe it can only be administered Intravenously , Matt

You may also like...