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Concerns with Starting Anti TNF treatment
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painful247
painful247
Last activity on 25/08/2020 at 08:44
Joined in 2015
9 comments posted | 2 in the Living with ankylosing spondylitis group
1 of their responses was helpful to members
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Hi Scuttboy1,
I started on Embrel injections which did nothing for me. Then they changed me to Humira and all was going really well for five weeks, when I had an horrific pain in my back, after an MRI scan they found that I had a heamangioma in the artery that runs through the spine and it had ruptured and forced my spine open. I am now on Infliximab and I go into Hospital for two hours every six weeks and am put on a drip. For me it is a life line, unfortunately it only lasts me four weeks before the pains rear there ugly heads again, but I don't know how I would cope without it.
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Lynne Curtis

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Hi Scuttboy,
i have had lots of experience with anti TNF. I was on Enbrel for years and I definitely found it helped me. Eventually I went on to Humira and it helped too, unfortunately it didn't give the longevity that I got from the Enberl.
i have Ank Spon and I stared a new drug secukinumab. This drug is fairly new, but I think it is for Ank Spon. If I were you take the advise of your Rheumatologist and give it ago. My only wish is that these drugs were around 30years ago.
i hope this helps. One other think I would say is, your Rheumatologist will monitor your progress and be able to reassure you. You don't get that online. Good luck and I hope things go well for you. Let me know how you get on.
Regards
Itai
coskun
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coskun
Last activity on 01/04/2025 at 12:04
Joined in 2015
14 comments posted | 2 in the Living with ankylosing spondylitis group
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Has any of you suffer from a persistent neck pain and a very peculiar sensation of a kind of electrical shock type of irritation comes in clusters of rapid nerve irritation which lasts less than a second and this continues even there is no stiffness in the neck. Because of this, I had to stop all my gym activities. This condition also affects my balance when I am walking! I hope I have given a description that makes sense by the readers.

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Coskun, if you have a Rheumatologist, get an examination and X-rays of your neck. I did suffer from a lot of neck pain in the past. Unfortunately I ended up needing surgery but that worked for me.( metal Mickey )
Maybe something as easy as a muscle relaxant may help you. Or a tens machine. Your physio may be able to help you with that.
i am really envious that you can do gym work.
i wish you good luck. Let me know how you go.
Regards
Ita
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Scuttboy1
Scuttboy1
Last activity on 03/07/2019 at 17:11
Joined in 2016
3 comments posted | 3 in the Living with ankylosing spondylitis group
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Hello,
I am just interested to hear if anyone else experienced anxiety over starting a course of Anti TNF.
My rheumatologist has been suggesting I start on Humira (Adalimumab), for the past two years now and Ive just had my last appointment with her. All I am reading online are lots of negative side effects and I'm just concerned whether I'll be doing the right thing - in a long-term sense.
Has anyone else had my concerns? or have any positve stories to help my decission?