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TOPIC: I am in remission after six years

I am in remission after six years 6 months 4 weeks ago #66014

  • gspaniol
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  • I contracted ITP in 2012, and as of 10/15/2018, I have been in remission. I thank and praise God! Please contact me if I can help you!
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I had acute ITP with roller coaster platelet counts since 12/2012. I have been lower than 5K and as high as 600K. In 2015, I went to Dr. Marc Zumberg at the University of Florida, he put me on a combo of N-Plate and low dose Cyclosporine. This stabilized what was a very unstable condition. Over the next couple of years, I lowered my dosage of N-Plate from 10 Mcgms/Kgm to 1. Cyclosporine dosage remained constant. On Oct. 15, 2018, I visited Dr. Adam Cuker at the University of Pennsylvania. He thought I was trending toward remission. He took me off Cyclosporine, I went home and had one more N-Plate shot on 10/17/2018, and have not had either drug since. By the Grace of God. Right now I am living an abundant lifestyle in retirement. I just went Heli
-Skiing with my 27 year old son in Revelstoke, BC and had a blast. I have had two hips resurfaced also. My overall health is now very good and I work at it. I even have an occasional alcoholic beverage. I'm sure I can relapse and any comments on this would be welcome (obviously this is a new experience for me). I want to tell my story as I think it may help others. I will continue to monitor my health closely as from what I have read, relapse, as the disease itself, is unpredictable. I would recommend Dr. Zumberg or Dr. Cuker highly. Dr. Zumberg had suggested Dr. Cuker if I hadn't improved and I had another hematologist suggest Dr. Cuker when I was traveling and had to have an N-Plate shot at Rosemont Cancer Center in Buffalo, NY. I have overcome anxiety and depression as well during this journey. God Bless!

Jerry Spaniol
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I am in remission after six years 6 months 4 weeks ago #66018

  • sillyman
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I'm happy to hear good news from someone. If I were you, I'd stay away from alcohol and eat healthy foods as much as I can. God bless you.
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I am in remission after six years 6 months 4 weeks ago #66028

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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Oh wow. That is a remarkably good news Jerry. Particularly for those that require a high Nplate dose like 10 or more, aka a row 4 response in my ITP treatments table. AFAIK, you are the first person on the PDSA forum to report remission leveraging Cyclosporine in any way. I've read studies where the drug is capable of achieving ITP remission, but you are the first to report it here. Congrats ! Cheers to a long remission !

On the subject of relapse prevention. Might I suggest Turmeric. It is great for various bad platelet riding viruses but they say one can't get enough past one's digestive system to be effective. So, it's a bit of a long shot. Still, India consumes large quantities of it and have unusually low incidence of Alzheimer's in their population. HHV1 and HHV6 acting together is the most current theory for the common form of Alzheimer's.

One can only hope that many others can benefit from your Cyclosporine+Nplate report.

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I am in remission after six years 6 months 3 weeks ago #66035

  • gspaniol
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  • I contracted ITP in 2012, and as of 10/15/2018, I have been in remission. I thank and praise God! Please contact me if I can help you!
  • Posts: 25
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Hi Hal:

I'm going to forward your response to Drs. Zumberg (who put me on the protocol) and Cuker to let them know that it appears that this strategy may not being considered enough. Thanks.

Jerry

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I am in remission after six years 6 months 3 weeks ago #66040

  • Hal9000
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Jerry, by 'not being considered enough' are you referencing my comment on bad/herpes viruses? If so, scan through this. It was quite an eye opener for me.
"Platelets and Infection – An Emerging Role of Platelets in Viral Infection"
www.ncbi.nlm.nih.gov/pmc/articles/PMC4270245/

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I am in remission after six years 6 months 3 weeks ago #66069

  • Hal9000
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As follow up. Here is a report about Cyclosporin being able to induce complete remission. It is dated 2006 - which is before Promacta/Nplate.
"Cyclosporin A as an Immunosuppressive Treatment Modality for Patients with Refractory Autoimmune Thrombocytopenic Purpura after Splenectomy Failure"
link.springer.com/article/10.1532/IJH97.05149

Using both Cyclosporin and Nplate is interesting. Nplate can be used to adjust for a safe range of platelet counts while the dose of Cyclosporin can be lowered as much as possible as is needed to minimize toxicity.

Discussions of this drug combination has come up before here on PDSA.
pdsa.org/discussion-group/7-treatment-general/27293-cyclosporine.html#32043
Forum member 'Vdeutsch85' couldn't get the combo to work. Although, I believe she has row 3 response/antibody since she responded well to 12.5 mg of Promacta and responded poorly to steroids. As shown in my treatments table, Cyclosporin appears to work for row 4 folks. Those that need the highest available doses of Nplate/Promacta.

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I am in remission after six years 6 months 3 weeks ago #66074

  • mrsb04
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  • Diagnosed in 2014. I'm also a renal specialist nurse
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As a renal nurse I’d rather walk around with no platelets than take Cyclosporine
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I am in remission after six years 6 months 2 weeks ago #66147

  • gspaniol
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  • I contracted ITP in 2012, and as of 10/15/2018, I have been in remission. I thank and praise God! Please contact me if I can help you!
  • Posts: 25
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I agree that Cyclosporine is scary, but I was only taking 125 MGS per day (very low dose) and my Doctors were monitoring my kidney functions weekly. I was concerned at first but I trusted and verified my kidneys were doing well.

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I am in remission after six years 6 months 2 weeks ago #66149

  • gspaniol
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  • I contracted ITP in 2012, and as of 10/15/2018, I have been in remission. I thank and praise God! Please contact me if I can help you!
  • Posts: 25
  • Thank you received: 2
I think Dr. Zumberg was very smart to suggest the combo; N-Plate to take care of "production of platelets" and Cyclosporine to take care of "destruction of platelets". He also advised this because I also have C95.90 unspecified leukemia that was affected WBC count. I was only taking 125 MGS of Cyclosporine daily.

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I am in remission after six years 6 months 2 weeks ago #66150

  • gspaniol
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  • I contracted ITP in 2012, and as of 10/15/2018, I have been in remission. I thank and praise God! Please contact me if I can help you!
  • Posts: 25
  • Thank you received: 2
No Hal,

I was referring to the N-Plate/Cyclosporice combo.

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I am in remission after six years 6 months 2 weeks ago #66151

  • gspaniol
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  • I contracted ITP in 2012, and as of 10/15/2018, I have been in remission. I thank and praise God! Please contact me if I can help you!
  • Posts: 25
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Hi again Hal:

Please elaborate on your Row3/4 charts? I'm unfamiliar! Thanks.

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I am in remission after six years 6 months 1 week ago #66201

  • Hal9000
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Jerry, on the charts.
Row 1 and 2 is when there are antibodies against platelets. These are 'platelet destruction' problem scenarios. Row 3 and 4 is when there are antibodies against either Thrombopoietin (aka TPO) or Megakaryocytes. These are 'platelet production' problem scenarios.

Note that TPO is the substance which stimulates bone Megakaryocytes to produce platelets. Row 3 is when there are antibodies against TPO. With antibodies against TPO, one's circulating TPO level reduces significantly. Row 4 is when there are antibodies against Megakaryocytes. With antibodies against Megakaryocytes, because there are no/few Megakaryocytes for the TPO to attach to, one's circulating TPO level increases significantly.

As described in the below study, low circulating levels of TPO predict high sensitivity to Promacta/Nplate - which is row 3. And conversely, high circulating levels of TPO predict low sensitivity (eg a 10 Nplate dose) to Promacta/Nplate - which is row 4.

"Thrombopoietin Level Predicts Response to Treatment with Eltrombopag and Romiplostim in Immune Thrombocytopenia"
www.bloodjournal.org/content/132/Suppl_1/734

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