What biologic next I wonder?

Been going through a very bad flare again, had to increase steroids to 20mg daily (after 1 year on these), on oramporph, fentanyl pain patch 25mcg and my co-codamol. Well am off to rheumy appointment tomorrow to discuss another biologic as HUMIRA did nothing for me. Can't take methotrexate, sulphasalazine or hydro - been there and done that, either had reaction or just caused other problems.

So what next?????????????? at my last appointment they agreed to continue for another 10 weeks with Humira but after 4 we discussed that I stop as the over all 20 weeks had done nothing, advised me that they could try 3 other biologics, so lets see what they suggest next.

Cannot continue as I am, I am in so much pain, got ulcers on my fingers, cold sores, unregulated sleep and driving myself nuts with pain and stiffness.

Why does everything take so long? this is my 3rd year now with ra and I am just getting progressively worse .....................

Coz of the steroids my stomach is playing up now too, so going for the camera down on Thursday : (

have had it done before but this time im going for sedation.... all the way.................

That's me done, thank you to those of you who have read this and replied.

Love, luck and angel wings with tonnes of paitence is whats needed right now.

Oh and dont forget to SMILE AND WAVE!!! :) :)

xxx

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  • I can't help beckybooboo but just a friendly hope all goes well tomorrow & trust you get the answers you need. Hope all goes according to plan on Thursday as well, eek, not surprised you want sedation, it's not a pleasant procedure is it, my gag reflex is terrible lol?!!

  • I wish I knew why they seem to be so slow, I was diagnosed in 2008 and I am now on tocilizumab since June this year. I had previously tried Rituximab which didn't do anything for me. In 2011 I had 18 months on Hurmia and it was a wonder drug for me, started working by the second injection, but I caught a bug and it stopped working. Now my crp is more or less zero, no swelling, but still in a lot of pain! The doctor said that it's because of all the damage that has now been done, so I am now being sent to OT to see if they can help. I just wish that there was no so much waiting around for things to happen.

    Good luck for tomorrow, I hope that they find something that works for you soon.

  • Hi Becky I really feel for you, this disease is so wretched when the drugs don't work and it's all out of control. I've had RD for 15 years with lots of changes of drugs. It's just a matter of finding the right combination. I am doing better now on abatacept, with methotrexate. Methotrexate has been a huge battle for me, tried it again and again over the years, with lots of reactions but this time I am doing better on it. So it might be worth you retrying it again with another anti-tnf. Have you tried leflunomide? Enbrel was the best anti-tnf for me but it's all so individual. I really hope you can get find a way forward. Hope it goes ok for you on Thursday. Love and luck for you.

  • Hi Becky

    Poor you, you really are struggling aren't you. I really hope your rheumy has a great plan for today. Luckily there are still lots of drugs available yet. I know how you feel as I've been in your position. Failed on Enbrel, Infliximab and Humira ( and all the pills) but Rituximab and methotrexate seems to be a good combo. If not I can try Tocilizumab which is reassuring. But I did have 15 months on steroids alone while waiting for Ritux to be approved by The National Institute for Health and Clinical Excellence ( NICE). Very frustrating. My fingers are crossed for you . Kikideelili x

  • Hello Becky, like you I'm unable to take MTX and have been on all the bio's. I started with Humira..........four bio's later my Abatacept has stopped working and I'll be seeing the Consultant on Jan 14th.

    There are more for you to try Becky so don't give up just yet. I got two years almost completely pain free on Abatacept but as it is the last one available to me I really don't know where I go from here but I'm sure the Doc will come up with something for me to take for the streadly increasing pain and fatigue.

    I'm trying very hard to be positive as I love C'mas and want to enjoy it. Won't be too long then until I see my lovely Dr Armstrong.

    You have a long road to go yet though. These drugs are wonderful and can be very, very effective. I really hope you get sorted and have a great new year in front of you.