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Das Verschwinden des Josef

by Olivier Guez

-1325 days until until long birthday weekend. oh no

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My Participation In A Clinical Trial

For the second post in this years NaBloPoMo, if you missed entry # 1 go here, I want to tell a little bit about my participation in a study that is for the poorest souls and sufferers of atopic eczema. Not just any eczema, but the therapy resistent, severe cases, just like I am. Oh joy. It is a clinical study that is run by our local hospital and it is finally a study where I can participate in, as in recent times I never fit all the criteria, they are quite picky with whom they want and whom they dont want.

For this study, and in fact there are still spots available I believe (7 in total), they want the therapy resistent, severe cases with a Scorad (a clinical tool used to assess the extent and severity of eczema, with a maximum of 100%) over 50 and an IGe over 5000. IGe are the antibodies in the blood which cause allergic reactions, a normal IGe is everything up to 100. This study runs over 29 weeks. Their intention is to see if the eczema improves when those antibodies are removed from the blood, this procedure is called immunadsorption. In week one this happens 3 times. in week five and nine 2 times.

How does it work? You have to go to the transfusion outpatient clinic.

You go and lay down in a bed, because it takes quite a while, so you better get cozy! In the best case they stick two IV needles in you, one in your left one in your right arm. In the worst case, you have to get a Hickman catheter placed. You get attached to a machine which has a special filter that filters out the IGe antibodies from the blood plasma and then the blood gets returned to you without the antibodies in it. Of course a study for the skin also involves getting a of bunch of photos taken each time you go to the clinic and get your skin status evalutated.

I know that they worked on this study since a couple of years and when I heard that it is finally happening I so much wanted to participate. But with the immune suppressants my skin was not good, but it wasnt bad enough. The first time I had a SCORAD of 43%. We reduced my dosis of immune suppressants with the sole and conscious intention to make my skin bad enough and oh my skin got bad, yikes! I havent looked that bad in years, it was hell and the people that dont know me long enough were shocked. It was THAT bad. The doctors at the hospital were excited, I am the most affected case they have in their study uptodate, but it definitely was no joy. I got through it though. I havent asked what my SCORAD was in week one, but I must have been in the 80s, possibly worse. I am now in week 5 and had that procedure 5 times already. I have another block in 3 1/2 weeks.

My skin has greatly improved, but I am still on immune suppressants and I am still using steroid creme every day on my complete body. I honestly couldnt say what is helping or if it is the combination of things, I dont know. But I am doing fairly ok! There is still some room for improvement, but as said, I am only in week 5, of 29.

Now to the IGe antibodies that are removed over and over again. I believe the highest count I had was 8900. Immune suppressants block the production of them to some point. I started the study with 5600 and after 3 times I had 650 antibodies left in my blood. Two weeks later I was up to 5500 again and another 10 days later I was up to 8000 (!!!). What the heck?!?!? you might ask, as did I. Apparently, and that is another thing they are looking at in this study, the antibodies that you have in your blood, also exist in your tissue. If you do skin biopsies, like they are doing in this specific study, you can tell that there is a certain amount of antibodies there that do damage, speak: they cause eczema. If you remove those antibodies from your blood, the distribution of those antibodies change. As they explained to me, 8000 antibodies in my blood only means that all those IGe thingies in my skin were sucked up by my blood again, from where it originated. Better in the blood than in the tissue. Its quite interesting really.

The procedure is OK. They didnt think my venes were good enough but they worked for now, not good, not even acceptable, but they managed SOMEHOW. This is all much more complicated and more things are involved in this, but these are the basics. And as this entry is horribly long already, I am going to tell you my feelings on it in another entry.

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