Platelet Disorder Support Association

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Long time no comments

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13 years 4 months ago #24827 by Dean
Long time no comments was created by Dean
Have not been on for awhile. How is everyone??
Sometimes it is hard for me to comment on posts, as I have only had experience with one treatment, Rituxin. I have kind of put ITP in a box and left it for awhile. I felt I needed to return and support those new to ITP, share my Rituxin experiences and listen to other ITP'ers and there battle with this EVIL disorder.
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13 years 4 months ago #24842 by Lady Elly
Replied by Lady Elly on topic Re: Long time no comments
Dean:
Did the Rituxin bring your platelet count up? If so, what is your platelet count? Is your I.T.P. in remission?

I took 4 treatments of Rituxin a couple years ago, platelets stayed very low 20k. Did not work for me.
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13 years 4 months ago #24849 by Dean
Replied by Dean on topic Re: Long time no comments
Yes it did. I did not respond right away. Counts went up and down. My count is ranging from 170-200k for the past 2 years. I do feel I am currently in remission!!! I have had two treatments. The first one lasted 16 months. I was a bit discouraged the first time as I did not respond right away. It was a slow response. The second treatment responded a little better. I was as high as 370k. I seemed to have leveled out between 170-200k. Have you tried other treatments? What are your counts averaging now?
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13 years 4 months ago #24854 by milly
Replied by milly on topic Re: Long time no comments
Hey Dean,
Just wanted say good to see you again, I don't post very often but I do check in every day to see how everyone is. Missed seeing your comments though!!!
There is no practice run in life.
The following user(s) said Thank You: Dean
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13 years 4 months ago - 13 years 4 months ago #24855 by Lady Elly
Replied by Lady Elly on topic Re: Long time no comments
My platelets have been below 10k for the past 8 months. They have been above 20k one time since October 2011, which was 22k in January 2012 for a few days. Since that time they rang between 6k - 10k.

I've had I.T.P. since May 2010 after taking a shingles vaccine. I started on high doses of Predisone from May - Oct 2010. They started to go up and it quit working as they were 6k when easing off predisone. Also, I had 4 x Retuxin June 2010. From June 2010 through November 2011, I had 15 x IVIG which brought platelets up for a few weeks and drop down quickly. I took danazol and it did not work at all. I tried papaya leaf extract for past 5 months and it has not work as my plateletsare still 6k - 9k.

Any suggestions?
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13 years 4 months ago #24870 by Ann
Replied by Ann on topic Re: Long time no comments
Next logical treatment might be one of the TPOs, Promacta or Nplate, if you don't have any contraindications.
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13 years 4 months ago #24905 by Dean
Replied by Dean on topic Re: Long time no comments
Dr told me the next treatment for me would be Promacta.
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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