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Tried all medications?

Posted , 7 users are following.

emily93
emily93

I'm 23 and have suffered with RA in one knee for over 12 years. I've been on Methotrexate, Sulphasalazine, Enbrel, Humira and Cimzia.

All have controlled the swelling in my knee up until Cimzia. As I have tried and tested so many medications, my rheumatologist has implied that it's unlikely an application for funding for a new drug will be approved by my local CCG. They have even suggested going back on Enbrel which controls the inflammation but not the pain, but this is also likely to be declined.

I have had problems with the CCG before, where they actually stopped my current medication and rejected my new application, concluding I needed a knee replacement. This is surely absurd for someone of only 23?

I have few options left and any new medication is entirely of the CCG, which has really let me down in the past. I have even had surgery recently, in an attempt to buy time and temporarily reduce the swelling. 

Has anyone experienced anything similar? Does anyone have any advice for dealing with the CCG?

0 likes, 3 replies

3 Replies

  • achybones
    achybones emily93

    Posted

    Hi Emily,

    I am so sorry to read that you have been through so much and at such a young age. I am 53 and have "failed" all treatments so I am left on painkillers. I can only imagine how disheartened you must be feeling. As you have found the CCG have very strict criteria that they follow, but they can suggest ways round this as they did with my last treatment which was Embrel. It took them over a year as my body doesn't tolerate Methotrexate in any form, and a lot of the treatments require that you take it alongside them.

    Only you can decide what is best for you after being informed of any options. Have you been referred to an Orthopaedic Specialist to discuss the possibility of a knee replacement? Is your pain only in that knee? How did you feel on Embrel? These are all the things I would consider and seek advice on. Good luck and I hope that you get some respite from the pain.

  • barbara58180
    barbara58180 emily93

    Posted

    I agree with Martin's concern. If you only have one joint involved-- that does not sound like RA. And taking Humera and Enbrel-- two anti-TNFs is NOT GOOD.

    See another Doctor ASAP.

    Good Luck, I hope you get an answer. 

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