ITP - Chronic - Diagnosed in the 1960s

I have had chronic ITP since the 1960s (I am 56 now) and really not had a lot of treatment. My mother and father took me to the doctors weekly from the time I was about 11 until high school in Baltimore, Md. After diagnosis I was stuck in the library during recess and told not to get in any accidents, typical treatment. I was not treated until the 1980s. In the 80s I was living in Dallas, TX and put on prednisone. It worked but I stopped because of side effects, so it was mostly watch and wait. I lived in the UK for many years and never saw a hematologist.

Back in the USA I was lucky enough in the early 1990s to go to Johns Hopkins and Dr. William Bell became my physician. As long as I was not thinking about getting pregnant it was ‘watch and wait’. I was then diagnosed with Hepatitis-C in the early 2000s and was back at Hopkins, this time at the Infectious Disease center. I picked up a new doctor and she had been a student of Dr. Bell’s, so I felt lucky indeed. I wanted to go on the treatment for Hep-C but the platelets were in the way. I did a 5-day prednisone test and they went up from 17,000 to 40,000 in four days so that was going to be my route, I imagined. I had CareFirst insurance and wanted to add the prescription plan since the interferon would, I knew, be a small fortune. I was denied due to my pre-existing condition and my being six pounds overweight.

So it was back to square one and searching for a study. I found one and was accepted on the Eltrombopag/Interferon Study at Mercy Hospital for Hep-C/ITP patients. With the blessing of my hematologist I started in June 2009 with a platelet count of 21,000, which within 30 days shot up to 425,000. For the rest of study I was one week on and one week off the eltrombopag. I did not do a 2-log drop for the Hep-C so was only three months on the study. Since the study I have not been checking my counts and received no treatment.

I had a bad cold at the beginning of January 2012 and I haven’t felt right since then. The weather has been warmer than normal so all the news agencies and people I know were having sinus issues, that is what I thought my headache was. I started taking Advil, Zantac, drugs I always knew I shouldn’t take. Head over steam, neti pot, anything for this headache. Then last Saturday my left hand went a bit numb and that was only for a minute or two. Then I went to a drive-thru only to find that I couldn't speak properly. However, by the time I picked up my coffee in the window I was again fine.

Next evening I had a bit of numbness again so to the ER we went. My platelets had dropped to 3,000; they could have been 3,000 for a year, who knows. They did a CT Scan and admitted me to the hospital, put me on steroid drip, and then platelet transfusion, which made no sense to me since ITP devours them. I was released with a 14,000 count two days later. Then the next day I was back for a CBC and the count had again dropped to 3,000 when tested. The nurse was calling it a TIA. I received a prednisone prescription and after three treatments of 50-mg days was up to 12,000. I have only been over 20,000 when on the study. They said I had drops of

blood on my brain but no neurologists came to see me at all. I was given Tramadol for the slight headache I am still having. It is not anything like what it was.

I’m also waiting on Promacta/eltrombopag. Unfortunately, I still have no prescription plan and I make too much for the free program with Glaxo. I ordered from an online pharmacy in Canada at $1,500.00 for 28 pills, supposed to be here in 7-10 days -- with fingers crossed. I don’t feel like I have all the information I need about this “TIA”. When does the achy head go away? I had never been in the hospital before either, so that was a bit of an adventure in itself at age 56. I have been blasé for 45 years of ITP and was shocked that I did have the brain bleed. The PDSA.org was a great comfort and I found other people who have had brain bleeds and sent posts. Also I realized that in 1999 I had already joined PDSA. Thanks for being there. Now to get rid of the headache, get back on a treatment plan and back on track.

- by Charlene

 

 

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