axPsA and
I have a very rare, congenital birth defect called Klippel-Feil Syndrome
or KFS. This is a skeletal disease which primarily affects the cervical spine, inner ear, teeth etc.
This painful syndrome has no cure. One can only treat the symptoms.
For decades doctors have told me the congenital fusion of my C2 and C3 does not cause pain. They know nothing of this disease.
When combined with axPsA, my spine is a real mess and my pain is exquisite. I am finally to see a pain doctor who “gets it” re KFS.
It has been a lonely journey.
I would love to hear from someone who has psoriatic arthritis of the spine and KFS as well.
I don’t have KF, but I do have axial PsA in lumbar and cervical spine, most notably the C5-C6. C5-C6 axial arthritis is particularly problematic because this is the segment responsible for head/neck rotation. So when there’s any kind of fusion going on, as is my case due to the arthritis, it can be particularly painful. My last radiological exam actually caused the x-ray tech to let out an audible “whoa!”. I asked him if it was that bad, and his reply was, “it’s pretty rough in there.”
I feel your pain. My lumbar spine has collapsed as held together with titanium rods and plates. In fact, all the disc in my spine have collapsed. My cervical spine is so messed up surgeons. Don’t want to touch it unless it was threatening my life.
Do you have a frozen neck too? I have very very limited motion side to side or up and down. I have so many bone spurs in my cervical spine. It looks like a haze on x-rays.
It’s nice to hear from someone who suffers like that. I don’t wish this disease on anyone. I hope they can stabilize your spine. I take a methotrexate infusion once a week. Doc wanted me on a biologic, but Medicare doesn’t pay for biologic after 65 unless you carried Insurance over from from your career. It was going to cost me $1623 a month. Too much for me.
Wishing you well, we both have to live day by day, not knowing what our pain is going to be from one day to another.contact the pharmaceutical company directly. Most have programs for people who don't have insurance coverage or can't afford the medications.
I hope you're able to find some relief from the pain.
Yes, I contacted the pharmaceutical company, the makers of Enbrel.
They do have plans that can pay for the drugs, but only if you are at the Medicaid level of income.
I do not qualify for welfare because My Wife and I are retired on a little less than $50,000 a year.
I’ve tried several places that offer the possibility of assistance … but they all offer you the chance to fill out paperwork because it is income based, and according to their standards, I make too much money. That $1163 per month, there is no way I can afford it.
I’ve written my senators and house representative. Of course, they’ve not responded in over a month.Check around on prices of different medications. The older medications will have a “generic version” called a biosimilar. Erelzi, in the case of Enbrel’s biosimilar. They’re not, strictly speaking, a generic version to the original drug, but they are equivalent to their name brand counterparts, using a slightly different formula to achieve the same therapeutic results. Also, some of the traditional DMARDs are less expensive than biologics, most notably, Methotrexate. I’m not sure if there is a generic Apremilast on the US market yet, but the FDA granted approval for generics in 2023, so you can check into that. The patent for the JAKi medication, Xeljanz, expires next year, so a generic version of that might come along fairly soon after that. You can also check with the companies that make these drugs to see what their patient assistance final cost will be to you. My personal experience in this vein was with Abbvie, the makers of Skyrizi and Rinvoq. Since my insurer, the Veteran’s Administration, had denied me Skyrizi in favor of something different, they approved me for Skyrizi at zero cost. I don’t remember how my income figured in, but my VA disability compensation is about what you state you make, and my wife is on social security disability. I have since stopped using Skyrizi, but last year I reapplied (and was again approved) for their patient assistance program to receive Rinvoq at no cost. Unfortunately, my rheumatologist had to take me off JAK inhibitors due to multiple opportunistic infections. I actually still have a lot of Xeljanz and Rinvoq that I never used because both the VA and Abbvie continued sending me these mediations even after they were discontinued. Infuriating that some people cannot afford these medications, and then due to a paperwork foul up, someone else gets $40,000 worth of it for free, and they’re not even interested in recovering the unused/unopened medication. Their response was, “oh, no problem”.
