Pick your brain

[SpudyM82]

I have AS , degen disc disease, stenosis and RA. I know some of them are under the same banner so I'm told. I would like to know if anyone is using, ( Adalimumab) for any of these conditions. I'm taking Gabapentin, Brufen 6's, Diazapam and currently use mezolar matrix patches 25. And I am still in pain, I am severely overweight but I can move and exercise but after I get a nice glow of relief and a great boost in pride . But then after it wears off I get spazams in lower back it legs, and burning in groin. With restless legs which I have a lot anyway. Any information on the (Adalimumab) would be very much appreciated. Thanks for taking the time to read this.

[KittyJ]

Until you get some people on it answering, if you put that into the search box and filter for NRAS then all the past posts about it will come up 😊

[Runrig01]

I’m not on Adalimumab, but on the weekly Enbrel that is the one of the other TNF inhibitors. I have AS, 3 slipped discs with the cervical one calcified, my SI joints and ribs are already fused. I’ve been on the injections for 6yrs, and they have made a big difference. I still get pain in the areas where damage has already occurred, but it is much more manageable and I’m less stiff. You have to remember that inflammatory arthritis like RA & AS, don’t only affect the joints but organs as well. I have heart & lung issues from years of uncontrolled inflammation, as I suffered over 25yrs before I was diagnosed, and fusion had already occurred. I have very few infections on biologics, before my body was too busy fighting inflammation, it was missing infections sneaking in. The risk of cancer is very small, and again uncontrolled inflammation increases your risk of cancer also. I wish I’d been offered them sooner before damage occurred.

[SpudyM82 in reply to Runrig01]

Thank you for the reply. I to have fusion in the mid back , was offered ablation but the told it would only last a year and be of no real benefit, I'm having real sharp pain in spine just area of fusion mid back, can't remember all the jargon but yes also 6 herniated disc 1 in neck 5 in lower back 1 of which is pushing on the spinal cord. But they say not severely, just hard to get motivated to move when the only outcome is pain. They say pain management is my only option now. Here in Northern Ireland anyway but I've been looking into SCS . Anything to get back some semblance of a life I've a 9 yo daughter. And. I don't get to do much physical activities like we used to. Thanks again for the reply , sorry mine goes on a bit. 👍 Hoping you feel better.

[Runrig01 in reply to SpudyM82]

similar here, my C5-6 is the calcified one they is pressing on the outer layer of the spinal cord. I get tingling in the hands, and upper arms ache like when you have a vaccine. N neurophysio ruled out Carpal tunnel syndrome, and said it was from the disc in my neck. They offered to refer me to Kings, but trying physio first. Not sure what SCS is, but hope you get relief soon

[SpudyM82 in reply to Runrig01]

SCS is a spinal cord stimulator. Acts like a tens machine to block constant pain. But it's placed inside the body near the spinal cord some say best thing ever some say disaster. But isn't this true for all remedies and potions. I have numbness outside of thumbs but no carpal tunnel. That I know of. On occasion I could Rach for something and my arm just drops which can be very scary.

[Runrig01 in reply to SpudyM82]

Of course. I’m familiar with them. I worked with a pain consultant who had a few beds on our ward, and used them as well as another version that had opiates in the device, and patient ls came back every 3 months to have them refilled. Very mixed responses to both of them. Don’t hear of them being used so much now. I have a professional wireless tens machine, which can treat 4 different areas at one time, it helps whilst I’m wearing it, and thankfully bring wireless I can move around with it. Like you say we all respond differently to different things

[oldtimer2]

I've been on adalumimab for 18 months and it has been marvellous for me, transforming my hands into something that I can use.

Strangely (as I was not expecting this) it also improves my back pain due to injuries, osteoarthritis, disc hernias and spinal stenosis. I was also told that pain management and gentle exercise was my only option for my back....but it is definitely better for about ten days after the adalumimab injection and then gets worse again.

[SpudyM82 in reply to oldtimer2]

Thanks for your reply. Do you think your body got used to it and would you have been allowed a larger dose. As I say I'm here in Northern Ireland my GP is an absolute legend and trying so hard to help me get my life back as I'm only 43. My specialists told me the same just exercise and get off the fentanyl patches but 2 gp and the orthopedic is that right! Said to move but not too much exercise but not to much. Walk but not to far. Spine surgeon just wants me off fentanyl and gabapentin. So my GP said to forge ahead and see what was out there as the poor guy really is snowed under . So I find it he tells my yeah or neah. Have you had or heard of anyone getting an SCS spinal cord stimulator, it s like a tens machine that blocks the constant pain, but inserted under the skin battery and all. I'm wearing a tens as I write this now as I went to watch my nephew race Motocross for a couple of hours now I'm in agony. Thanks again for taking the time to read this sorry it goes on a bit.

[oldtimer2]

It improves each time I give myself the injection - it just doesn't quite last for the 14 days unfortunately, but it does remind me that the injection of adalumimab is due! I was hoping that losing some weight might make it last longer but it hasn't - but the extra activity that I can do makes me feel better anyway. I just have to plan things to fit in.

I've read about the spinal cord stimulator but it's very new and I think you would have to find a trial going on in the UK. It sounds hopeful, though! The spinal injection that I had last year did help to reduce the pain in my back and down my leg, but the spinal surgeon won't give me another unless I have sciatic pain again - my pain is too diffuse he says, so he wouldn't know where to target it. He will, however, do an emergency decompression if I become paralysed....lovely thought!

[SpudyM82 in reply to oldtimer2]

We seem to be on very similar paths. But not nice ones.