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TOPIC: Month since diagnosis - what else should I be doing? + general questions

Month since diagnosis - what else should I be doing? + general questions 6 months 3 weeks ago #66950

  • Devonpankiw
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I’m a 25 year female. I was diagnosed June 5, I was noticing large bruising randomly and had the small little dots all over my body. I got blood work done and my levels were 1,000 per ML. If that’s the right terminology.

I was admitted to the hospital (June 5) after going to the ER and they ran another blood test to make sure they results were that low. All my other blood tests came back normal, the only thing off was my platelet count.

I received steroids, platelet transfusion (x2) and my levels went up to 26,000. Then the next day, they dropped to 10,000. I started receiving B12 shots in addition to my steroids, because they noticed I was B12 deficient. The next day, I got to 37,000 and was able to be released from the hospital. I was prescribed 70mg of prednisone daily.

A week later, June 14, I saw the doctor in outpatient and my levels went to 90,000! I received another B12 shot and the doctor said I could decrease my steroids to 50mg prednisone per day. 10 days later, I saw the doctor and my levels dropped to 36,000. He told me to increase to 60mg prednisone and wasn’t sure why they dropped. Does anyone think the drop from 70 to 50 was too sudden?

Next appointmet, my levels were stable basically. I think 40,000. He suggested we look at other treatment plans and the option I chose was Promacta. It’s being special ordered so I don’t have it yet and I’m still taking 60mg of prednisone. I’m not sure what mg of the Promacta I will be on. I need to do more research on spleen removal. Is there a thread of that on here?

I’m still trying to figure out what happened in my body to cause this to happen. I had to get a Hep A vaccine because I was going to South Africa for vacation. (Had to cancel because of my hospital stay). I also took the Typhoid vaccine (pill).

I also was on a cleanse during the month of May through a company called Arbonne. They focus on improving gut health. Which is def important with auto immune. But I’m wondering if I ingested a certain bacteria that didn’t work with my body. I had to exclude gluten, soy, dairy, vinegar, coffee, added sugar, alcohol. Just seems crazy with the timing... but the research I’ve been reading on gut health basically says to avoid gluten/added sugar so it’s weird that I was at 1,000 platelets while following this diet. I’m probably looking at it the wrong way but I want to find a doctor that is looking for WHY this happened.

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Month since diagnosis - what else should I be doing? + general questions 6 months 2 weeks ago #66962

  • Hal9000
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Hello Devonpankiw.
Right. One would think knowing why one's ITP occurred would be beneficial to a cure/resolution. Unfortunately, ITP is so little studied and understood, exactly what triggered ITP is of little benefit - at least with today's thinking. But. It seems you've got a handle on it anyway. It was likely one of the vaccines, right?

My belief is that chronic ITP is chronic when it is triggered by a life long chronic disease, like mononucleosis (EBV/HHV4) virus or Shingles/ChickenPox (HHV3) virus. Both of those viruses are life long. There is no known cure. Further, ITP triggered by the common Flu virus is not chronic because that virus is not chronic. One's immune system fully destroys it.

Anyhow, if one's ITP was triggered by a vaccine, wouldn't it make sense to give the immune system a few months to try to sort out destroying platelets versus not destroying platelets? Just forget about a splenectomy for a while?

On Promacta. The normal starting dose is 50mg. For Asian folks, 25mg is more the norm as they are more sensitive to it. For what its worth, keeping counts up with Promacta for awhile sounds like a great idea to me. If after 6 months or so, the dose required starts to slowly decrease that would be ideal and could signal an eventual remission. On the other hand. If counts don't begin to decrease, ITP may be chronic.

On a side note, since counts didn't go all the way up to normal level on steroids, in my opinion, Rituxan is probably/likely not a good option.

Have you given any thought on diet changes to improve B12? Lots of spinach, or ?

Hope this helps.

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Month since diagnosis - what else should I be doing? + general questions 6 months 2 weeks ago #66972

  • Lman
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Hal-
How late do you think an itp followed by a viral illness might start showing it's symptoms ?
5 months before I see my first itp symptom, I had Herpes simplex infection ( that I had no idea where did it come from ?) And recovered within a week.

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Month since diagnosis - what else should I be doing? + general questions 6 months 2 weeks ago #66974

  • Hal9000
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Lman, I don't think I've read of a report suggesting an association between ITP with either HHV1 or HHV2. For example, I don't see those mentioned here.
"Platelets and Infection – An Emerging Role of Platelets in Viral Infection"
www.ncbi.nlm.nih.gov/pmc/articles/PMC4270245/

As for delay with other viruses. I can take a guess. It would make sense that a resolution of symptoms of any flair could be a trigger. The flair occurs because the immune system is not fighting the virus adequately. Resolution of symptoms could be the immune system ramping up its activity to destroy the virus. Or. Resolution of symptoms could be the immune system re-adapting itself to more effectively destroy the virus and possibly destroy platelets. Does that make sense?

The study above claims it is viruses hitching a ride on platelets, as a means to distribute itself, is what eventually leads to platelets alone being destroyed.
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