I'm a nurse in a Pediatric clinic, and one of our physicians is a Pediatric Rheumatologist, so I'm familiar with Sarcoidosis. We currently have a pre-teen who has been battling it all of her life, and is currently doing well on Remicade (although she is also on chronic Prednisone).
Well, I'm not a health professional, but I'm very intimately familiar with Sarcoidosis, though I really rather give up that distinction.
and is currently doing well on Remicade (although she is also on chronic Prednisone).
Yeah, I thought I was doing well on prednisone too, until it started taking 60mg/day doses to keep the fevers away. If I ever had to go to 80, I think my wife would have had to shoot me in self-defense, or put me out of my misery (a jury would have been justified in accepting either defense).
Neither remicade nor prednisone is a cure. Prednisone is likely to eventually give her diabetes, and osteoporisis and other problems. I was at the edge of both, and then got a central serous retinopathy in one eye, which is very much not a good thing. The retinopathy might have been caused by sarcoid, but it went away when I weaned myself PDQ off the prednisone to start the Marshall Protocol. After 22 years of going downhill, I'm now moving uphill.
Please, see the brochure at the sarcinfo site quotes the NIH Access Study to show that long term use of immunosuppressants like predisone or remicade do NOT improve the situation. Trevor Marshall has identified the bugs, the mechanisms the bugs use to hide in the immune system, and how to bring them out into the open and kill them. The bio-chemistry is spelled out in the various papers referenced on the sites.
If she is a pre-teen, she's not even 1/2 the way to where I was after 22 years of sarcoid & prednisone use. The 'remissions' I had kept getting shorter and shorter, the troubles more and more.
I hope your physicians have open minds, but it would be unusual. The experts I'd been going to and getting prednisone would not read the MP research, nor bother giving it a try. I found a doc in single practice who was willing to give it a try, after all it's a simple antibiotic protocol. However, I don't think he announces the fact at any professional meeting.
The funny thing is that using Remicade for sarcoid is an off-label use, but it doesn't cause scorn the way that suggesting the use of the Marshall Protocol did at the infectious specialist office.
I wish I knew what else to say here. The few people I have contact with who have sarcoid are older, and I can write it off as their adult judgement when they don't pick up on the Marshall Protocol, I had read it and waited until I was almost blind in one eye before I decided it was do-or-die time. But kids .... it's real hard to accept that it's in somebody else's hands and this kid might not get well. -- But it is. Take good care of her.