The suffering while waiting for treatment is inhumane

Hi have been a member for several years, but this is my first post.

I have been in Embrel for 11 years which has been a life saver, but about 3 years ago some pain and inflammation was breaking through. My Rheumy suggested I consider changing over to Ritiuximab and gave me literature to read. My next appointment was with nurse six months later who advised me not to hesitate and asked me if I was cautious due to worry about waiting for approval and said as I already had funding Embrel more approval would not be necessary. By this time my rheumy was on maternity leave and I saw a locum six months on who said forget about a change as I would be left crippled while they waited for Embrel to be out of system and for tests to be carried out to ensure I qualified.

My original Rheumy came back from maternity leave and at next appointment did not remember suggesting a change and I would be seen in 6 months.

After waiting 9 months for an appointment I contacted hospital about 6 times and each time was told there was a problem with making appointments and they would be in touch. After almost a year between appointments I had an appointment made with the locum who told me the Rheumy was on maternity leave again and he was only checking to ensure I still qualified to stay on Embrel.

In the last few months I have had an extreme flare and the doctor I saw as an emergency insisted I admit Embrel was no longer working and should go over to Rituximab. It was only then was it said I would have to have 2 qualifying blood tests with sufficiently bad readings 6 weeks apart before they could apply for funding.

In the meantime the pain is unbearable and very debilitating.

So sorry for the ramble but feel pretty let down and must say if we did this to our dog we would probably be reported and end up in court charged with neglect and cruelty.

Wondered if anyone else had similar experiences.

13 Replies

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  • I haven't, since I'm not on biologically. But as said in another post recently - this is barbaric!

  • I can't even get on anti-tnfs, because although I have a firm diagnosis from one rheumatologist and meet criteria (for AS), my current rheumatologist doesn't accept my diagnosis, so says I don't meet criteria. So I haven't had any treatment for my disease for at least 6 years now. I have to wonder whether if these drugs were a lot cheaper, it would be a lot easier and quicker to get on them.

  • Wow, that is shocking. I am so sorry you have suffered so much and so long.

    You are right about torturing animals seeming to be more unforgivable than people.

    I am in NZ and I have to say, I think despite my disappointments with them that

    they are more pro-active here, both Rheumatology and the bigger system.

    I can only hope that somehow you can kick some butt to get things happening.

    Can you approach an MP or someone to champion your cause?

    I am sorry I can't offer any help and hope that something can be done for you.

    Best of Luck, Smiley-face.

  • I am absolutely appalled at how you have been treated. Don't put up with it any longer. Go to your GP and demand [in the nicest possible way, of course!] action. Write a letter to your consultant if necessary. You should not be having to put up with this lack of care. Be strong and assertive..... if you have the energy poor love xx

  • I do sympathise in the way you have been treated. I would make a formal complaint. To leave you in so much pain is at best reckless but also inhuman. As you say, uproar if an animal was left to suffer this.

    Hope all this is sorted for you pronto. Babs x

  • I'm horrified! I switched from Enbrel to Rituximab in about 4 weeks. If there had been a longer delay, my GP would have intervened and/or I'd make a formal complaint, I know the poor NHS is struggling, but this is sheer incompetence. I'm afraid to say that my only bad experience in my RA journey, has been with a locum. I caught the tail end of a programme on Radio 4 about locums yesterday or the day before.

    It can be hard to be assertive when one is ill, but if you have a good relationship with your GP, I would start there and/or enroll a friend to do battle with you. J

  • i was in a similar position and was taking humira. I was on it for twelve years very good but last two years started to get use to it and with discussion with consultant they said they put me on Rituximab. it took nearly four month with various tests. in the mean time they put me on prediselon to reduce the pain. I was told I had hapetitus b at some point and need to take another tablet for that and they put me on another biological drug abatacept. sorry about spelling.

  • Yes make a compliant things may move a little faster for you .Good luck xx

  • This is truly Inhumane !! To make one suffer . I was diagnosed 4 years ago . At that time where I lived . Only could find one Rhumey doc ! He was So busy it took me 3 months to get in . At this time already seeing a pain mAnagement Doctor . For spinal deteriation . Finally was put on Methatrexate . No Help . I moved to another city and traveled a Good hour half . To see my doc . I found an Immunologist . Because the Rhumotologist here doesn't accept my insurance . So now I have been seeing an immunologist for a couple years . He gives me injections for flare ups . And I have been on Humira for 6 months . Prior to all of this I had seen my GP. I definitely understand your frustration ! You need to enlist a friend or family member to go in with you . I took my mother with me . She wasn't standing by any longer ... Good Luck and I hope you feel better soon .

  • Sorry to hear how you are being messed about whereistherealme. I think it's the old addage of it's not happening to them. Sometimes I don't think even the rheumy's realise how bad it can be. I do hope you get sorted soon, and as the other's have said make a complaint, as this just isn't good enough in the 21st Century.

    Anne x

  • Fin a different Dr that's for sure

  • I too took enbrel successfully for 11 years until flares, recurring kidney, bladder infections and hives. Had to go off and underwent blood tests and was a biting for insurance to approve Xeljanz. Yes, I too was going to end up in a wheelchair without enbrel. While I'm waiting for insurance approval and rheumatologist put me on lowest dose of prednisone which is working for now, though it gives me insomnia. Hope you get help soon.

  • Please don't put up with this. There are brilliant consultants out there and good services. I changed hospitals about 6 months ago and it was the best thing I did. Start with your Gp, write to your hospital, but don't wait as we can't afford too. I truly hope you get the treatment you deserve soon.xxx

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