Spondyloarthropathy and spondylitis ankylosis moderate-severe condition, enbrel is suggested by dr

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I have spondyloarthropathy and spondylitis ankylosis and it's moderate-severe and it's going on for 8 years and I'm 22 this year. Doc has suggested enbrel and humira for me and he made me do some tests before starting the medi and I'm waiting for reports and I have to see him this Tuesday. I'm just very scared due to side effects. I was ok sulfazaline for 3 months last year and it didn't do any good to me. My crp was gone to 30.8 from 16. I'm very scared. Has anyone used these treatment? Please reply ASAP. It'd mean the world to me. It's making me nothing but depressed.

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10 Replies

  • Posted

    Hi I was diagnosed 4 month ago, after 5yrs seeing rheumatology for answers. I have had this probably 20 yrs, as I already have a lot of fusion. Have always had back and buttock pain put it down to my job as a nurse which is physically demanding. A month ago I started Benepali, which is the same as Embrel, I wish I'd started it years ago. I have much less stiffness most of the time, and the fatigue has lessened. I personally don't worry about the side effects, as it is not worth living in pain if you don't have a life. There's a research paper on NASS showing that there appears to be no increased risk of cancer for AS patients. Also uncontrolled inflammation can also increase chance of cancer, so it's better to have inflammation controlled. It is early days for me on treatment and my specialist says I will improve further. I'm sure others who have been on these meds longer will be able to reassure more.

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    • Posted

      Thank you so much for replying. I was expecting absolutely no reply. I'm convincing myself even more and it's kinda difficult for me but I'm getting there. I'm seeing the doc on Tuesday to get the final prescription I hope nothing goes wrong.

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    • Posted

      You will get your life back. Since starting I have restarted at the gym after 5 yrs. also less fatigued at work, I work 12.5hr busy shifts,and starting to cope with them like I did before my illness. Good luck, and try not focus on negatives but see the positives 😁

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    • Posted

      Can I also please know how long can the treatment go on? I have suggested 3 months. But can I know exactly how many years? Will I be able to stop these cost cutting TNF blockers in future?
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    • Posted

      Hi my Rheumatologist says it is a 6 month trial, then you have your measurements retaken, and complete all the Bath questionaires, you need to be showing response to treatment for it to continue. Then you are reviewed every 6 months. Some people appear to have response for many years, others find over time it loses effect and they have to switch. If responding you can be on it for years. Hope this helps
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  • Posted

    His is only a decision that only you can make. Do some research on this medication. 

    My back is already fused in many places. This is caught at a early age may help to prevent bone damage abd fusion in future.

     

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    • Posted

      I've decided to go on with treatment and I have an appointment tomorrow so it's my day. I'm done suffering with pain for 8 years now. I'm just 21 and it's stopping me to do lots of things in my life like a normal 21 year old women should be doing.

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    • Posted

      Thanks a lot. I'm leaving India today. I haven't started my treatment as yet. I will start it there. For now I got some vaccines and tb prevention medicines just to be on safe side. Thanks a lot. I'll keep you updated on this. Best wishes.

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