RainyCloud said...
Hi dcd, how are you doing? You haven't been on the forum much lately. Hope all is well. Have you tried ARA-290 again ? 🙂
Hey rainy my friend, thank you for asking. Unfortunately things are not going well. My immune system is all kinds of *****d up.
I'm quite certain now that the vaccine is what triggered a resurgence in this spondylitis. I keep seeing people come into the FB and Reddit groups w/ a similar story. “Got the vaccine, enthesitis started not long after, now diagnosed with reactive arthritis.” I cannot tolerate many foods now because of it. I eat healthy but its really hampered my ability to eat anything outside of meat and green veggies. Pretty much every supplement is a trigger now. Including the ARA-290, which is just mind-meltingly frustrating because it works so well for my neuropathy. I've since gotten quite a few people with neuropathy on it with great results. I do not think RW responded that well unfortunately, which is unfortunate because he is one person I root for and would really like to have gotten benefit. We think possibly because he has large fiber involvement as well
The neuropathy is out of control as well. I can’t use ARA often without aggravating the arthritis and doubling my issues. SCIG just does not work for it. It has spread this year significantly to most of my body, and this seemed to correspond w/ my experiments with LDN. I have about
the worst case of SFN of anyone I can find. The neuropathy damage to my legs is really making me concerned. I'm numb everywhere, I vibrate, burn, sting, electrical sensations. But my fingers and feet have started to have sweat gland dysfunction where they emit a sticky type of substance like maple syrup and stick to everything. It's awful.
We plan on trying IVIG at 2g/kg. Trying to get approved. I did see improvement w/ IVIG at that dosage. SCIG just does not work, and I have regressed, and probably shouldnt have spent 8 months on it. If that does not work, we plan on trying a drug called Daratumumab in a novel experiment. It basically knocks out your plasma cells so your body stops producing antibodies. Might be a good solution for refractory neurological conditions. I would supplement w/ a small amount of SCIG to raise antibody levels so I am not immunocompromised.
https://pubmed.ncbi.nlm.nih.gov/35098616/If that doesnt work I will likely do HSCT at Clinica Ruiz. This is a very serious procedure where they ablate your immune system w/ chemotherapy and then grow it back w/ stem cells. In theory it should grow back without the autoreactive memory. Extremely risky, but I am close to that point. Just trying to go down the check list first and try every safer option before I do that.
I also spoke w/ the professor in China who is doing the Car-T trials for lupus and sjogrens. They put 5 patients into remission, and he would be willing to accept me, that is another option I am considering, but would like to see more data first.
This is where my head is at. Unfortunately, I have spent many years chasing alternative and holistic treaments to dead-ends. It's clear that I have some sort of connective tissue disease. Unfortunately the symptoms mimic lyme, so that's where I was looking for a long time, and it's very hard to tell the difference in the early stages. But my plethora of antibodies and lack of response to lyme treatment tells me what my gut has always suspected (feared) is correct. I do worry there is a genetic proclivity towards it, as is common in many autoimmune. Sigh. Hoping I can beat it.
All of this pain seems to be breaking my brain as well. It's causing significant depression. I just need relief for a while, but the intractability of it just drags my mind to places I do not want to go.
Post Edited (dcd2103) : 8/3/2022 6:57:44 PM (GMT-7)