Health Update – Utah Medical Trip 1.9.14 – 1.13.14 – “End of The Line. Is There Another Train?”

I’m at a difficult crossroad: take on the risk for a potential cure with Rituximab + Omalizumab (Xolair). Or, stare at the inevitable relapse to rotting skin, muscles, intestines, and nerves and wasting away.  Using just Xolair in the past just didn’t seem to have enough juice for the severity of my condition…Xolair is designed for IgE levels under 1000.  Me? I have IgE counts upwards of 22,000.

We’ve seemed to maxed out the positive benefits of the current treatments. Up to 800mg of gastrocrom since december and able to eat solid foods 80-90% of meals, leading to weight gain, now at 132lbs and holding. Never happened before.

However, current treatments aren’t a “cure,” just buying time. But now I’m also running out of time!  I’ve been on Cyclosporine for years now and it’s supposed to kill your liver after a few months.  Lab tests have looked fine but I’m headed into the unknown.

Both Doctors believe if I’m to make significant improvements it’ll be with Rituximab + Omalizumab combination.

Here’s how this experimental “treatment” is supposed to work. My IgE proteins (that triggers allergic sensitivities) has been 22,000 and now sometimes drops to 9,000 range. Well, “normal” range is 75 to 200. There’s no easy way to get it there from my stratospheric IgE numbers, so we had to get creative. IgE’s, in a way, are produced by B-cells of our immune system. Rituximab, the drug we’re hoping to experiment with, kills off B-cells. Therefore, we should stop IgE production from those B-cells. The DANGER is my immune system will be greatly damaged for a while. Though IgE production may be reduced, other important elements of our immune system that the B-cells produce will also decrease, leaving my body defenseless or worse, unbalancing immune system in some other way. The hope is none of that will happen, and when we kill off SOME of the B-cells and IgE is decreased to around 700, we use Omalizumab (xolair) to soak up the remaining 700 IgE count down to the 75 IgE count that’s normal. This way, we are trying NOT to kill off all the B-cells and therefore won’t leave my immune system completely defenseless.

Won’t the IgE’s come back? Maybe, but recent research has shown people maintaining a normal IgE count and thus “cured” even 18 months after they started treatments. In these cases, it suggests a feedback loop that’s broken. In other words, in normal IgE ranges, the B-cells IgE factories produce a certain number of IgE’s everyday and stays that way. The factories check the IgE’s already out there in the blood stream and sees it is enough, and only produce enough to maintain that amount. But if there are tens of thousands of IgEs in the blood stream, like me, the IgE factories interpret that as being on high alert, and keeps producing a ton more IgEs. We’re hoping thats my problem, and once we reduce IgE’s to a normal level, the IgE factories will reduce their production accordingly!

Question is, is it even possible that I get rituximab through my insurance Kaiser? Rituximab is ridiculously expensive. If so, what do I need to do? Dr. G is also working other angles including proposals directly to the manufacturer and proposals to the Univeristy of Utah Hospital.

 

CURRENT TREATMENTS

Dietary

Immune System/Allergy Pathway

  • Cyclosporine (immunosuppressant): alternating 3-day cycles. 125mg, 125mg, 100mg.
  • Gastrocrom: 100mg 8x Daily.
  • Zyrtec (Certirizine): 20mg 2x Daily
  • Pepcid (Famotidine): 40mg 2x Daily
  • Doxepin: 1.5mg Daily

Atopic Dermatitis Skincare

 

RESEARCH RELATED TO RITUXIMAB TREATMENTS FOR ATOPIC DERMATITIS

Sequential combined therapy with omalizumab and rituximab: a new approach to severe atopic dermatitis.

Rituximab in severe skin diseases: target, disease, and dose


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