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[leeslay]

I did get a response from Dr. Sloand from the NIH and she said that AA and MDS are seperate diseases but have very similar syptoms so they can be hard to tell apart. I guess that's why my Dr said I had both? Maybe to cover all bases, I'm not sure.

[leeslay]

Marlene, I have never heard of that medication but I will ask him about it. I am still new to this and am not sure about all of the different meds and treatments out there. Thanks!!!

[Marlene]

From what we were told when John was first diagnosed is that it is very important to nail the diagnosis since treatments are, for the most part, very different. I think only one form of MDS is treated with ATG.

One other thing regarding iron overload. Each full dose of Exjade chelates approximately 40 mg of iron but it does vary from person to person. (at least that's what I remember) So it takes several days of using it to remove the high amount of iron you get with each transfusion. Each bag has about 200-250 mg of iron so it takes 10 -14 days to get rid of the iron in each bag. This is also true for desferral. The frequency of transfusions pretty much dictates whether or not the Exjade will reduce the iron burden or just keep it status quo.

I hope you were able to get your red cell and feel better.

[leeslay]

Wow so we went up to Denver to see the allergist about the horse desensitization and they called today and said come up Wednesday! So we are running around trying to get things done. I have to go in to the hospital here in the morning and get a new PICC line inserted. But thats a piece of cake. I will be in the ICU for 3-4 days and then they are going to do the horse ATG right after so that will take another 5-6 days. At least I'll be home before xmas! I am pretty nervous though, the Dr in Denver said that the horse desensitization isn't a common thing and has only been done about 6-7 times but he was pretty confident so it made me feel better.

Wish me luck! Tomorrow is going to be a busy day!

[Laura]

Lee-Best wishes in everything. Keep us updated!
Laura

[leeslay]

We checked in Thursday evening and they started the process on Friday morning, yesterday was hard, I got pretty sick a couple of times. So far today things are going much better - no sickness or reactions yet, they are going very very slow which is fine with me!!!!

A couple more days of desensitization and then onto the horse ATG!!!

[Lisa V]

Lee, what is involved in the desensitization? I hadn't heard of that process before. Do they give you something besides the usual prednisone, Benadryl and Tylenol? Hope it works for you!

[leeslay]

Hi all! Well apparently there has only been about 6 desensitizations done so far world wide! I had an allergic reaction to the Horse ATG skin test and so they did the rabbit ATG back in April. There were little to no results so my Dr wanted to try the Horse ATG.

They basically started out with very small doses of the ATG until they had a full 100% dose going. It took about 6 days to do but the hospital was so great!! At the first signs of serum sickness they stopped the atg and gave me a break from it. Whereas the hospital I did the rabbit atg at just kept pumping it in me even when I was really sick.

So I had a cbc on Tuesday and my platelets jumped up to 39,000 from 13,000and my rbc count also went up on its own. It has never gone up on its own, not once so we are pretty excited about it!! I know it'll take awhile to really know for sure but we are very hopeful!!!

[Hopeful]

That is great news Lee! I am so happy for you!

Wishing everyone a Merry Christmas and a New Year filled with strength, hope, and love!

[Lisa V]

That does sound like great news, Lee! Hope things continue in that direction!

That also sounds like a very sensible way of giving ATG to people with serum sickness reactions, rather than just pushing through it. It's odd that it is so seldom done that way. I guess that's just another graphic illustration of how economics often takes precedence over patient wellfare!

[JEZ]

Fantastic news!!! Best wishes to your full recovery of counts!!!