Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group It’s been awhile, need help

Hello,
It’s been some time since I’ve been here. I was on here frequently several years ago needing help with my SI joints. I am now dealing with severe neck pain. It seems to radiate into my mid thoracic area or vice versa. The entire spinal cord is painful to the touch. It’s so incredibly painful. When I turn my head there is so much pain and spasms. I had a neck X-ray which only showed some aging changes, osteoarthritis. My rheumatologist feels it is inflammatory and has been pushing humira for years and really won’t help with other options.

Is neck pain a common symptom? How about the middle back? What has everyone done to help with pain in these areas?

Hi lulu! Good to see you, but sorry you're back and in pain.

In women, neck pain can be very common. Several of us here at KA have thoracic (mid back) pain. My entire spine lights up at various points, including the SIs, which are now mostly fused, and I have neck pain due to osteoarthritic changes in my neck. I recently had an injection of anasthesia into various nerve bundles in my neck and shoulder that seems to have calmed the area. That was after years of treating it myslf with salves and lotions. I can't take NSAIDS or most pain killers at this point, due to kidney damage and gut damage. Also, I have Crohn's so that's also a factor.

Why are you hesitant on your rheumatologist's recommendations?

Also, don't forget that x-ray is not the most reliable for seeing where AS is at. It only shows changes that have already occurred. Your rheumy needs to get imaging done that will show the inflammation. That is how you will really know where things stand.

Love and light.

Hi Lulu,
I hope you are feeling much better by now. I think I read that you have PsA and psoriasis so I can understand why the rheumatologist already believes the spine pain is inflammatory. I agree with the points that Kat made. More tests should be done to check on the state of your PsA because it might be causing your spine to flare up. I don't doubt osteoarthritis was found either and I realize how painful that can get so that should be further looked into also.

The neck and middle back areas are very possible targets for any spondyloarthritis (which includes PsA), but the lower back and SI joints are often targeted first. Osteoarthritis can target any joint over time, but it tends to target the compromised joints sooner.

I have AS fusing, but I also have osteopenia and disc disease. I get muscle and nerve trouble off and on because of it. I have OA in my arms and legs (mostly knees).

I see a Pain Management Specialist and they help with the following:
A. Physical therapy and I continue the therapy at home daily.
B. Pain relieving procedures: Steroid injections or nerve ablations (RFAs).
C. My pain meds are currently gabapentin tramadol and baclofen.

My rheumatologist now lets me take an IL-17 inhibitor (cosentyx/secukinumab) since I can't have TNF inhibitors anymore.
I still take a once daily NSAID (meloxicam/mobic) because I still can't get around without it.
I also diet with NSD.

Take care,
James

Hi James,

Happy New Year!

How do you find the secukinumab works?

I hope it helps. I'm sorry to hear you are experiencing what you are.

Love and light.

Hi Kat,
I get some AS relief from secukinumab but I was hoping for more. I only got the 150mg injections without the 'loading doses' so that might be why. It is helping to reduce my ESR and CRP to normal levels though so that is a good enough reason to continue it. I am at 16 months now.

I asked to switch to the prefilled syringes because I cant get used to using the pens (I don't like sudden jabs).

Also since you mentioned having crohn's, both Taltz and Cosentyx have a warning for possible new or worsening IBD symptoms.

Take care,
James.

Hi James,

Thanks for the heads up on Copsentyx and Talz. I'll keep my eyes open.

The pens can be a trial. I don't like them either. That said, not sure I like pre-filled syringes either! lol o

i hope your response to sekukinumab builds up. I'm on adalimumab. It helps. Not as much as Remicade did, but better than Enbrel.

Love and light.