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#510580 - 04/24/15 08:25 PM Re: Really tough decision - any advice [Re: SunnyD1979]
Sue22 Offline

Registered: 01/13/08
Posts: 21331
Loc: Upstate NY
I can't comment on taking a biologic while having the neuropathy.

but if the two are not incompatible, does your doctor know,

i've been on humira for almost two years and it has helped a lot of my problems.


Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

#510594 - 04/25/15 06:17 PM Re: Really tough decision - any advice [Re: dmx07]
Timo Offline

Registered: 07/16/01
Posts: 3333
Loc: BC, Canada
You will feel great on Enbrel

A better way to say that is that you *might* feel better with Enbrel.
Everyone is wired differently so results will vary.
I was on Humira for 5 months and didn't feel anything so I stopped. Next I went on Enbrel and only lasted 3 weeks because of the side effects. Massive headaches and nausea that I never had before so I quit that too.
Now I'm trying Remicade and so far, after 1 month, the constant pain has pretty well gone so I'm quite hopeful. I'm also hopeful all the other physical issues I had with the liver, the gastric problems etc might get better now that the inflammation is down. Fingers crossed!

#510639 - 04/27/15 02:20 PM Re: Really tough decision - any advice [Re: SunnyD1979]
SunnyD1979 Offline

Registered: 10/08/14
Posts: 47
Loc: UK, South
Hi all, thankyou for all your replies. I am more of the thinking that Enbrel might help me and know that this wont remove the neuropathy pain sadly. I cant tell whats the AS and whats neuropathy anymore so if Enbrel works then maybe that will give some insight into what is what.
Its good to hear it has helped others with their additional issues that came along with AS.
My rheumatologist has sought advice from neurologist ref Enbrel. All the literature I have read says avoid in demylinating neuropathy. Mine isnt classified as demylinating as small fibres dont have myelin apparently. It still feels like quite a risk but I am at the point where every single option carries risks,including doing nothing.
I think the gabapentin I take for neuropathy may be making tinnitus worse, sure this is a side effeect. Sadly I cant stop taking this as need this to numb out exruciating nerve pain.
I hope one day soon there is a cure for all these ills. I actually really wish I was in my 60's and not 35. I genuinely feel that way. The thought of what state I might be in in another year frightens and depresses me quite alot. Hopefully enbrel may bring some relief from all things and I wont write such depressing posts anymore, haha.
Thanks again everyone :-)

Edited by SunnyD1979 (04/27/15 02:22 PM)

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