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Das Verschwinden des Josef

by Olivier Guez

17853 days until until long birthday weekend. oh no

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Health Update: Guinea Pig Me

Isnt it lovely? Now that I havent blogged in almost a year, I have so much to catch you up to. Many topics to write about, which is fantastic for NaBloPoMo! 😀

Sometime in spring, the case study I participated in, an IGE-Apharesis study for severe, therapy resistent atopic eczema, came to an end. Which basically means they repeatedly (7 times) washed the IgE out of my blood. There are a lot of posts on this on this blog btw if you are new. They loved my case and even presented it at a conference in Canada, my photos also were on their posters. 😉 Totally crazy. It really did help and it greatly reduced my use of steroid creme. Unfortunatly the success only lasted for about 4-6 months until it returned big time. One would think, great, we will just do it again! Aehm nope. They only had the assignment from Fresenius to test how well it works. It was never supposed to be used to get a new therapy approved. I was so pissed when I found out! Massive grrrrrrr. Lesson learned.

After this study, the departement of Transfusion Medicine decided they wanted to try a different kind of blood therapy for Atopic Eczema and needed 2 people to try it out on. One male, one female. Guess who the female is?

It is a so called Mini Photopheresis. They take out 460ml of blood and separate it. They then inject something into one part of the blood, that makes it insanely photosensitive before putting it under a radiotherapy machine. Once its all done, I get it all back.

This is the separated blood:


And here in the back, what looks like a copy machine, is actually the radiotherapy machine:

I must have had it about 15 times already. For that treatment, my dermatologist decided it is about time I am getting off of the Immune Suppressants that I am taking since about 6 years now. The plan was to reduce it by 50 mg and replace them with the new Photopheresis. Didnt quite work that way. I ended up having massive withdrawels only days after reducing my daily dosage. My skin literally exploded! It was awful.

We managed to get my skin under control again but my Asthma, which is also from the same source where my Atopic Eczema is coming from, exploded right after and we didnt get it under control for months. At the same time my white blood cell count dropped into the one digit range from the new blood therapy, with having my iron storage completly empted. It was absolutely horrendous. It ruined my complete spring and early summer. I was massivley bummed. My lung is a topic that needs its own entry. 🙁 Swimming was not an option for months. 🙁 🙁

Oh well. I am back on the full dosis of Immune Suppressants and God knows if I ever will get off of them, but the blood therapy seems to help. My SCORAD, the scale that measures the severity of the Atopic Eczema went from 71 to 41 in 6 months. Its still bad enough, but masses better than it was after the case study. There is lots in plans for my skin, I will update as it happens.

My lung is a whole other topic though …

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