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Change of Meds

Posted , 8 users are following.

Skye2015
Skye2015

I've had RA for nearly ten years, started on Sulphasalazine eventually on 6 tablets a day, then onto Leflunomide, now on Methotrexate injections 15mg after not being able to tolerate the tablets. The side effects are not good and after months on the tablets and 6 weeks on the injections, not let up in pain. Rheumatologist won't put me on biologics due to the cost sad so looking for anyone's ideas as have run out of options. The only option I am being offered is to try Sulphasalazine again (didn't work last time) or back on the Leflunomide that due to a drop in dosage after weight loss, caused the flare up I am still suffering. Feel a bit stuck with no real options.

0 likes, 12 replies

12 Replies

  • matthew28646
    matthew28646 Skye2015

    Posted

    It does sound like you do need something like a biologic such as humira but yes I see what your rheumatologist is saying the injections are very expensive there over £300 per injection so its a big cost to the nhs BUT on the other hand if you need them then you need them. They usually say if 3 or more dmards have failed then they turn to biologics. I started on sulfasalazine but had to come off them because I had headaches and tinnitus, I then went to to methotreaxate but I had to come off them because my liver function was going up, Im now on hydroxchloroquine and waiting to see if I can go on leflunomide. What strength leflunomide where you on?
    • Skye2015
      Skye2015 matthew28646

      Posted

      Can't remember the dose of Leflunomide I was on, just remember she halved it when I lost the weight, then about 3 months later I took really unwell and haven't got through it yet. She's said that the only way they would consider Biologics due to the cost was to take me off all meds until I deteriorate enough to qualify, they would 'score' me every 4 weeks. Just depends on nhs area as I know other areas are more happy to do,it without all the fuss 😔
  • chrissie72261
    chrissie72261 Skye2015

    Posted

    i was on metroxate made me sick diahorea im on sulfassalaszine and lefluemoide and they cant put me anything thing else im stuck i have IBS  lactos intolence all tablets make me fell in i lost weight with lelfuide but stoped it and restarted know im not lost any since so i have a big dilemia if they change mine took me ages get my tummy use to these drugs
    • Skye2015
      Skye2015 chrissie72261

      Posted

      that's really awful, it's terrible being stuck with no real solutions, I'm feeling that way too right now and apart from the pain, the side effects are really hard to deal with - hope you get sorted soon 😊
  • frances85589
    frances85589 Skye2015

    Posted

    Really feel for you Skye.I have been on methotrexate and am now on sulfasalazine but have tried the biological drugs humira,embrel and rituximab. They did keep on about costs of £10,000 a year of each but its the consultant and specialist nurses who keep trying me on different ones.am on steroids n pregabalin too but not on any biological drug at moment as had massive bad effect after last one.how they can not try you on these is not right. Who are they to decide on cost against your health
    • Skye2015
      Skye2015 frances85589

      Posted

      Thanks I know it's so frustrating especially when I feel so rubbish. It's just a bit more scary now as usually there were other options but have been told they've run out, and especially so when it's purely down to cost and where I live. I'm thinking the methotrexate is going to be abandoned as even with 6 weeks on 15mh there's no change and the side effects aren't easing up. We all need a magic wand for sure. Hope you keep well 😊
  • Light
    Light Skye2015

    Posted

    If you can afford it, try going to India to get the biologics.

    They get the drugs at seriousy reduced prices and provided you choose the right rheumatologist, Indian doctors can be extremely well educated and experienced – and even kind and friendly to boot, something you don't get much of in the UK, at least not in London.

    • Skye2015
      Skye2015 Light

      Posted

      Thank you hadn't thought of that as an option. It's ridiculous that depending on where we all live, our health is totally compromised 😔
  • kim94523
    kim94523 Skye2015

    Posted

    Hi Skye!  How can the Rheumy refuse the best and most advanced treatment if others don't work?  I don't understand!  Is this a UK thing?  In America, you can kick and scream and write letters an threaten to sue and usually get your way.  I'm sorry if it ia not so there sad  If you are in the US or there is some agency you can appeal to in the UK, I am pretty good with the "power of the pen" and would be happy to help you write something.  Private message me if so.  Other than that, I have read on other forums that you can appeal to Humira directly, they will often provide free or discounted medication for those who cannot afford it.  I can't put the web address in this forum or the moderator will delete my post but it is the name of the company, Humira, with the word "my" in front of it... good luck and let me know if I can help!  Kim
    • Skye2015
      Skye2015 kim94523

      Posted

      Thank you Kim, yes it's definitely a UK thing and also depends on where you are in the UK too as some health areas do quite easily put people on Biologics. It was suggested that I ask for a 2nd opinion but my rheumatologist is the head of the department so I'm a bit stuck with that one. Don't think the methotrexate is going to be my long term med as the side effects haven't eased any and I'm still in as much pain. Really getting me down, but have to pick myself up and carry on and see what happens, hope you are keeping well 😊
    • kim94523
      kim94523 Skye2015

      Posted

      sky, darling, contact Humira directly. This is rubbish (as you would say) we would say BULLSH*T!!!  They are causing you harm! Don't docs in the UK have a hypocritical oath? "First, do no harm"?!

      And yes, like the previous poster suggested, if Himira can't help you because you are in UK, go to India!!! This is horrible! I will keep you in my thoughts!!!! Xoxxoxoxoxoxox 

  • barbara58180
    barbara58180 Skye2015

    Posted

    I've been on all thoses things, but at one point was on Cyclosporin, with good results. It can be dangerous, but my Rheumatologist thought it was a good idea and helped me alot along with the methotrexate and other things.

    Good luck

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