9 Year Anniversary

Hello everybody,

Just passed my 9 year anniversary. I knew it was June sometime when I was first admitted to the hospital for low platelets and an incredibly odd mark on my arm but I had to look back at my records and couldn't believe it was 06/12/2002.

For about a month I had never felt so alone and so scared until I discovered this place. It was such a relief to find a group of people who understood my condition and how I was feeling.

Thanks again for being there (here),

Kelly

PS, any Albertans on the forum here?

Happy Anniversary.
This site is definatly a comfort. People that understand the whole ITP issues.
Hope for continued Anniversarys for you.

Congratulations Kelly! See there is life after diagnosis. A couple months
ago I had my 22nd anniversary.

Kelly and Melinda

If you don't mind me asking how many times have you had to treat over your 9 and 22 years?

Milly I was put on 60mg of prednisone when diagnosed - I was on pred for almost 4 years, we had moved overseas shortly after diagnosis and my hematologist in Japan was wonderful but the one I had in Hong Kong didn't know much and I decided I didn't want to crash there and need a splenectomy. So I ended up tapering to a low dose and then once back home tapering off that. Went into remission - lower than normal count but no treatment.

Due to a tetanus booster in 2002 my count took a dive and I had to treat again. My hematologist got her prescription pad and I told her I would not take prednisone with my son's wedding coming up, she had her billing office check if my medical would cover WinRho - had one IV in September 2002 and went into "remission" again. My counts are decent [not normal range] and I'm not treating. Last count was 128k I believe, that was almost a year ago - have another count coming up the end of the month when I have my physical.

Thanks Melinda I was just wondering how often people treat over a longer period. Good luck with your physical.

Hi Milly,

Sorry for the late reply. Currently I don't treat very often, only if I have some kind of procedure coming up then I'll go for an IVIG infustion. I just had my counts checked the other day and they're at 7K. I know, not good. I also take tranexamic acid when I get nosebleeds that I can't control, about once a month. I'm waiting for an appointment with a new hemotologist so we can discuss the new treatments that are out there.

Kelly