ITP Warrior - Elsa

My ITP journey began in 1990 at the age of 35. At the time, I was eight months pregnant with my third child and was frightened to learn that after some routine bloodwork with my Ob/Gyn, my doctor had serious concerns regarding my extremely low platelet levels. I had never heard of ITP or low platelets before and was scheduled to have a C-Section in just a few short weeks. Because I was pregnant and my doctor could not guarantee that the local sedative or anesthesia recommended for this procedure would not pass through to my unborn baby, a painful bone marrow biopsy was performed without anesthesia or a sedative to determine the cause of my low platelets and rule out leukemia. I was officially diagnosed with ITP the following week and since that time, have struggled to maintain safe platelet counts.

There were limited treatments available for ITP at that time. Over the past 33 years, I have been treated with IVIG, had a splenectomy, undergone three rounds of Rituxan (in 2011, 2017, and 2019), and have taken A LOT of prednisone. Without treatment, my average platelet counts fluctuate between 30,000 – 60,000 but I have dipped into the single digits many times and have had to spend several nights in the hospital under watch. Unfortunately, no improvements were seen with the IVIG or the splenectomy. The steroid prednisone had been my hematologist’s preferred prescription choice due to the fact that we can always count on an increase in my platelet count in a day or two. After 33 years of intermittent prednisone use, the drug’s tumultuous side effects have really taken their toll on me, both mentally and physically, and I yearn for the day I can find another solution or achieve remission.

I first tried Rituxan in 2011. The IV treatments were given once a week over a four-week period and after four to five months of not seeing any results, I was elated to find that my counts rose to safe levels for almost a year and a half from 2011-2013. Unfortunately, I fell out of remission in 2013 and was put back on prednisone intermittently for another four years. In 2017, I tried Rituxan a second time and experienced an almost identical pattern. After four to five months of no improvement, my counts rose for a year and a half but just as before, they dropped to unsafe levels in early 2019. I found myself once again on a platelet roller coaster ride and made the decision to try Rituxan for a third time in August 2019. In late 2019, my hematologist of 25 years moved out of state. I am currently under the care of a new hematologist at the University of Wisconsin Hospital in Madison, Wisconsin. He was shocked to learn of my many years of consistently being prescribed prednisone. Knowing that I had been taking prednisone for the last ten months, he agreed to wean me off it in order to allow me some relief while we waited for the Rituxan effects.

I recently retired as an Elementary Bilingual Para-educator after 34 years. I had come to realize though that every fall and winter without fail, I would fall ill with viruses that I would catch from the many elementary students I worked with. I believe the saying “Little Kids – Big Germs” has some value! The viruses I caught always affected my ITP drastically and my platelet counts would plummet when I became ill, requiring me to have to seek treatment with additional medication. I feel that since my retirement in June of 2020, I’ve stayed healthier in terms of not catching so many viruses throughout the year.

In the Spring of 2023, my hematologist and I felt it was time to try one of the TPO drugs. I began taking Promacta (eltrombopag) in April of 2023. It has been five months since starting Promacta and we continue to try and determine the correct dosage while balancing the side effects and safe platelet counts. I began with 50 mg. daily and my counts rose to almost 700K after ten days. My doctor then reduced the dosage to 25 mg. tablets with my platelets reaching into the 300Ks. I was recently taking 12.5 mg. every third day but my counts dropped into the single digits two weeks ago. I am currently taking 12.5 mg. of Promacta daily with added prednisone to bring my platelet counts back into a safe range. Three weeks after starting Promacta, I developed parasthesia symptoms (numbness, tingling and a burning sensation in both hands and feet), which are listed as potential side effects with Promacta. A normal EMG test performed recently confirmed that I didn’t have neuropathy. The timeline of the parasthesia symptoms seem to fit with the starting of Promacta. My hematologist and I are currently weighing the options of whether staying on Promacta would be the best option for me or switching to another TPO medication such as Doptelet (which is not covered under insurance) and leaves me with a very high monthly deductible or switching to Nplate.

I have been a member of PDSA for many years and am deeply appreciative for all the information and support I have received from the organization over the years. I have attended several regional PDSA support group meetings in Milwaukee, WI, and recently I was able to participate in my first PDSA Conference in Chicago where I was able to network with other PDSA members and staff and received valuable information from the top ITP specialists. I am 68 years young and enjoy staying active by practicing yoga, cycling, walking, gardening, and playing with my two grandchildren. I stay hopeful that one day I will be one of the lucky people who has a sustained remission. I am incredibly thankful and grateful for the support of my husband and three children, doctors and nurses, the ITP community, and PDSA.

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