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Newly diagnosed

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12 years 5 months ago #33125 by kittikatz
Newly diagnosed was created by kittikatz
Hello there,

My name is Andrea and I was recently diagnosed with ITP. I am currently undergoing IVIG and Prednizone therapy (alternating 60/50 mgs) and I hate it! I swell up every other night on that prednizone!
I found a page on a search about changing ones diet. I am a vegaterian (but eat chicken) Provo lacto type. I am willing to do anything tomorrow (since its super late in the AM! (I should be sleeping)
Here is the article I found:

colinperrott.wordpress.com/in-progress/low-platelets/

I will give this info to my Doc..and about this website I just found!!!

Thanks!
I would love some help I get my next lab work Tuesday....and I want the count higher.

Love from me to you.
Andrea
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 5 months ago #33126 by Sandi
Replied by Sandi on topic Newly diagnosed
Hi Andrea.

There have not been many people who have found that a certain diet has helped to raise counts. For a handful of people who have, it's been trial and error finding one that works for them. It's a very long process that is not always successful and certainly not a quick fix.

Making a healthy lifestyle change though can't hurt, so if you want to follow a healthier diet, it can help in other ways.

Most people do have problems sleeping while on Prednisone. That will subside as the dosage is reduced. I's just one of the many possible irritating side effects.

What was your last platelet count?
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 5 months ago #33128 by dru
Replied by dru on topic Newly diagnosed
Hi Andrea,

Prednisone is awful! I have been on it many times. In my own experience a certain kind of diet has not affected my platelet count, but definitely can help with predniisone related issues. I also eat chicken but no red meat. When on predniisone I stick to a protein/veggie low carb diet similar to what people use for type 2 diabetes. Prednisone always increases my blood sugar so this diet really helps plus I don't gain weight or swell up. I take a sleeping pill when on a high dose of prednisone, otherwise up all night.


Dru
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12 years 5 months ago #33130 by Ann
Replied by Ann on topic Newly diagnosed
kittikatz, I don't know where you got that link from but the information in it is not altogether right. The section called "substances that reduce platelet counts" is just plain wrong. Aspirin and acetaminophen for example don't cause platelet drops but can cause clotting problems. A major difference.
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12 years 5 months ago #33174 by kittikatz
Replied by kittikatz on topic Newly diagnosed
Thanks much for the comments! I had trouble logging on with internet exploder, so I downloaded firefox.
I am doing trial an error right now and just hopping that Tuesday's count is higher. My last count (5/21)was too low (11,000) so the Doc sid that I either go the ER for transfusions..or get IVIG. I figured why feed the fire, so I opted for IVIG.
I am worried about being on prednizone so long..as it could shut down organs. I take a sleeping pill at night--valerian root 3 tabs plus sleepy time tea. I have had an injury and am going to PT on Wednesday to help clear that up.
The trouble is that my Doc dosen't help me much as far as support is concerned. I didn't even know there was a support group!
I am looking forward to studying more.
Thanks
Andrea
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12 years 5 months ago #33175 by tamar
Replied by tamar on topic Newly diagnosed
Andrea, since you mentioned natural substances (valerian root and sleepy time tea), you might want to google them and make sure that they don't have an effect on platelets. Some supplements do.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 5 months ago #33179 by Sandi
Replied by Sandi on topic Newly diagnosed
Prednisone won't shut down your organs. It has some nasty side effects, but that isn't one of them. Just be sure to taper off and not stop it cold turkey, as that could be life-threatening.

Platelet transfusions usually are not helpful for ITP (unless there is serious bleeding). Are you seeing a hematologist?
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