Re: Re: Low Platelets, Thrombocytopenia - RESPONSE

[Guest guest]

Hello Gerard,

Wow, do I empathize with you!

In the 1990's, specifically from 1991 - Summer 1996, I experienced severe ("acute" as the clinicians say) Thrombocytopenia with platelets at levels as low as literally undetectable on one occasion and typically, without treatment intervention, at levels hovering around 5,000. As you probably know, any level of platelets below 20,000 is considered hyper-critically low leaving one vulnerable to cerebral (brain) or hepatic (liver) hemorrhage at any given moment, potentially.

It proved quite a 'sword of Damocles' underneath which to navigate life and, accordingly, ended for those 5 1/2 years all bicycling, running, soccer, and/or essentially any activity that would or could subject my body to any format of impact in order to avoid fatal or injurious bleeding. Dealing with large and difficult-to-explain hematomas (large, deep, severe bruising) that took weeks to finally disappear was frequent and a royal 'pain,' (also bleeding from shaving, I had to reduce to once every other day or two days) among a host of symptoms, some very bizarre, deeply 'personal,' and anxiety provoking. Please exercise caution in the navigation of your life lest you place yourself at serious risk. Swimming and walking became my principle modes of staying in good physical condition through this period in my life.

That said, in order to avoid what then was the treatment I heard most often prescribed, splenectomy (surgical removal of the spleen), my physician and I employed monthly, massive infusions of (IV) gamma globulin (by "massive" I mean no less than 3 'magnum' size bottles) to temporarily block the reticulo-endothelial ('r/e') cells lining the spleen and arteries which were consuming all my platelets in a completely disregulated way from the normal way these cells function in the clearing of old, 'exhausted' platelets as replacement platelets were being produced in/by the bone-marrow. This temporary blocking of the r/e cells allowed my platelet levels to spike up for a period of time allowing a clinically helpful degree of generalized healing to take place throughout the body, especially the brain, and had the added side-benefit at that time of conferring a boost to my immune system which was slowly

eroding due to the HIV virus which I contracted in 1981 and for which I was avoiding treatment prior to 1996 as definitively, demonstrably efficacious treatment for HIV in the form of triple combination antiretroviral therapy with a protease inhibitor was not broadly available before then.

Ultimately, what resolved my thrombocytopenia in Summer 1996 after initiating triple combination antiretroviral treatment in April 1996 (which did not automatically on its own end the thrombocytopenia when I became HIV viral undetectable after only 4 weeks of treatment) was the use of 5 instead of just the previous 3 per month 'magnum' size bottles of (IV) gamma globulin in July. Almost immediately my platelets shot up to normal levels and have stayed there ever since.

Why 5 bottles instead of the usual 3 made all the difference (?), no one could explain at the time and since then. The guess that an especially higher dose of (IV) gamma globulin would make THE difference in ending my thrombocytopenia together with being HIV viral undetectable was mine, my physician (who was and is top-notch) had run out of palatable ideas (to me), he was willing to try and was successfully persuasive with my health insurance company (crucial as IV gamma globulin is scary expensive), and it worked.

As with your physician, my physician had wanted to try prednisone at the outset of my thrombocytopenia when I resisted the idea of splenectomy, but I ruled it out due to its many side effects which seemed to me also potentially problematic immunologically at a time when I was not prepared to subject my immune system to unknown risks and 'pressures' while trying to survive with HIV without 'serious' treatment available in 1991. He also wanted to try a format of cancer chemotherapy for my thrombocytopenia at the time as an alternative to prednisone, but I instinctively anticipated that route would prove even more challenging for my immune system than prednisone. So, we landed on the (IV) gamma globulin as being both potentially helpful (it proved to be so) and complementary to boosting, or at least not harming, my immune system.

Today, all these years later, I must acknowledge that I have not kept up with more recent developments for treament of acute thrombocytopenia. However, I thought that providing the narrative enclosed might potentially prove helpful to you as you medically move forward from where you are. If you have any questions with which you think I may be helpful, don't hesitate to write using the e-mail address above; I wish you the best.

Arthur Powers

From: Gerard8599@... <Gerard8599@...>Subject: Re: Low Platelets, Thrombocytopenia Date: Thursday, December 15, 2011, 2:12 PM

December 15, 2011

Hi, have Thrombocytopenia and am on Prednisone, but can only be on the steroid for so long. It apparently is not doing the job and is turning into chronic Thrombocytopenia. Wondering if anyone knows of any herbal remedies out there that might work or have tried any of the online offers that are a bit on the expensive side that work. If so, I would greatly appreciate any information.

Also has anyone heard of Nplate and it's effectiveness. All I know is it is a sub cutaneous injection, but haven't met anyone who has used it.

Thank You,