Thrombocytopenic Purpura Support Group

I believe many of us share something in common besides HUS &/or TTP. We all got the HUS/TTP somewhere. Anyone want to try to find the common links?

I'd like to know how many of us have been treated for allergies, such as hayfever, pollen, etc.

Has anyone ever had a Kenalog shot?

What medicines did we take before TTP?

My wife and I are definitely thinking this is season related. Here`s why...

April 6th 2009..first incident

Nov 30th 2009..second(we had a late fall)

Mar 28th 2010..my last one

I cant see that this would be pure coincidence especially considering these three incidents all happened in the space of a year!

And just as extra information...I am not or was on any drugs before the incidents. However I also do not have ANY allergies of any shape or form, before or after.

Steve

Post edited by: rolex24, at: 04/07/2010 05:09 AM

Do you live in a farm/ranch area? I'm thinking about water run off and nitrates in the water. I have been drinking bottled distilled water for months because I live in an area where high nitrates have been reported in much of the water supply. I don't know if the nitrates make any difference but I have been bruise free except once since I started on distilled water. April and March can be the time the snow is melting. Did you have a rain or snow thaw in November? The fertilizer and other farm/ranch chemicals get washed into the water supply and I don't know of any way other than distilling that they get out of the water.

I'm glad you are trying to figure out the common link.

Thanks totoks....but no...we are city bound people. Although I can see your point about chemicals in this case. I do however drink a lot of tap water at home, so who knows. Chemical treating or not, it could be a possibility.

All said and done though, I found out the other day, that I have to go on a year long treatment with immuno-suppresants to see if that keeps the TTP at bay. My only concern being that now I`m lowering my systems ability to fight `the common cold` to keep the TTP away.

Its sort of six of this or half dozen of the other. Keep the TTP away but possibly be sick a lot more often, or have the TTP come back and put up with those treatments.

I have been researching TTP for over a year now, (have written a few papers on the subject)I'm still floored that a lot of the medical profession has no idea what it even is, let alone how to treat. The ONLY thing I can find any link with is medications. This of course takes me to the FDA, and wow, what a mess that is. my advice to anyone is wait at least 10 years before taking any new meds that are approved by the FDA. Rolex24, you say you weren't on any drugs at all, are you sure? Allergy meds, cold meds, antibiotics, even something so general you might not even remember.?

Did you have any surgery's before your first onset of TTP? even a pulled tooth, anything at all?

Rolex24,

Chemical treatment of water won't take care of the nitrates. I have municipal water that is treated and is also tested 4 times a year. I don't drink it anymore. I wish you didn't need to go on the meds. I have increased my fruits, vegtables, and grains; eating as close to nature as possible and it has helped keep the HUS/TTP at bay.

Krazymommy66,

Please add Iboprofen to your list. The 10 year idea sounds good but Tylenol has been around for more than 10 years and they know it can cause HSU/TTP. I don't think the FDA wants to clean up the drug supply. As long as drugs cause illness; doctors have jobs.

We need health reform; but I'm talking a different kind than the president is.

totoks,

seems we need reform every where these days.

On a lighter note, Rachelle has been with thisTTP nightmare for over a year now and with many relapses however, good news came from the U of M today...they have a kidney donor for her, if all goes well she should be in surgery later tonight, or early tomorrow, then she can go to the Cleveland Clinic so they can fix the damage the TTP caused her heart. maybe then her B.P. will come down and she will not ever have another stroke.

Very emotional day here for us.

Debbie

Krazymommy66,

That is about the best news i've heard for too long to remember. Please keep us updated. Thought and prayers are with you and your's.

I wonder if the bad kidney could help the doctors learn more about this disease? Maybe thats the wrong thing to ask, but we're all searching for answers.