It is my 3rd infusion, a little late on the 3rd one, was supposed to be 6 weeks, but turned out to be almost 8 weeks. Skin cancer set me back some.
I am wondering how long it will take to get results?
The next thought, what will the results be?
This is my 3rd biologic, but I have a hard time feeling any results, already have a lot of damage to the back and joints. I was hoping I would have less finger joint pain, but looks like a lot of that is OA. The US showed synovitis, and synovial thickening. The biological have cleared up my scalp psoriasis, so it has done something.
I have relied on imaging to check inflammation levels.
I see my Rheumy tomorrow, see what she has in mind.
I wonder if they consider doing nuclear bone scans to check inflammation levels in the central axis? Had one 2 years ago, I was lit up like a Christmas tree. My SIJ often feels “puffy” still.
This morning was the second time I woke up with horrendous pain in my foot, that had the biopsy, the pain was also referred to the back of my thigh, I was thinking it was a infection, but it went away. Possibly nerve pain? The back of my thigh felt like a sharp pain, like a blood clot. I will mention this to my Rheumy, maybe Enthesis?
Still have not gotten my biopsy results on the toe, hopefully tomorrow.
One of the worst, and most relatable things we can all have with this disease is certainly the “when is this going to work” syndrome we’ve all faced. Only wish I could give you more than I’ll keep my fingers crossed for you, and hope that it’s sooner than later.
Give us an update when you hear back from your rheum on that, as I’d be interested to see what they say on the pain you mention. It could, honestly, also be just a random flare point, best possible scenario.
Interesting Rheumy meeting yesterday, my new Rheumy is discounting the prior US reports that shows Enthesis and synovitis in my hands, just going with the x-ray of the hands and SIJ that say no sign of PsA. We did agree on another MRI of the SIJ, dedicated to look for erosion and inflammation. She is trying to justify a dx of DISH, rather then PsA. She might have a point, with the CT I had showed calcification of the longetunal ligament, with a more flowing fusing of the antior part of the vertebrae.
A previous MRI showed a lot of erosion of the sacrum, but the radiologist wasn’t looking for it.
No. Just no. The more delicate of our site members need not be exposed to my innermost fears and anxieties which are, apparently, all wrapped up into one package in this picture. Why is there a lady pirate wearing Paddington Bear’s hat in your back? Good grief!
I go for my follow up xrays and ultrasounds in a couple of weeks. I haven’t found much relief in Humira or Remicade. Enbrel worked really well for me, but I developed a topical allergic reaction so now I am doing the Remicade infusions. Paddington looks stellar!
My fate will be decided by the next pelvic MRI, Rheumy doesn’t believe there is erosion, even with a Salvador Dali looking SIJ! The poor little Paddington Bear…
I think the Remicade is helping, but I have so much damage to my joints and spine, I have no idea what better is!
FYI
So the way this is read, it is looking at the SIJ from the bottom up, so the image on the left is the right side SIJ. The "hat on the bear is the spine, the face is the spinal cord, and the little arms are the illiac bones. The white part is inflammation and the dark part of the joint is fused together.
Now, the reason it is like that can be from either ankylosing spondylosis, or PsA, or Reactive arthritis from infection, could be any of these things.
I would think a qualified Rheumy could see this image and go “wow, you have erosion, inflammation and fusing” but with the medical industry it is “what does the Radiology report say?” I understand that there could be liability with a doctor, if they were to say, “looks great” and then it turns out to be bone cancer, but geez, what are paying these people for? To just write out a prescription or read a report to you, I could do that…
Vent over.
Gosh Jon - you do have such a lot going on don’t you? Like you I have a huge need to know and to understand whatever is going on. That helps me sort out what’s what and then work with it. Keep plugging at your doctors to try and get them to understand that need. Surely sometime one of them will actually cop on …
I use that as a coping mechanism, I research the heck out of it… She comes up with far fetched assumptions, like my Raynaud’s was probably caused by using power equipment, not related to autoimmune, but all my evidence is tossed. Gee, maybe I was abducted by space aliens, and the anal probe messed up my SIJ joints?
