ITP Personal Stories

Finding a Solution

My name is Michelle. I am 28 years old. I was diagnosed with ITP during my second pregnancy, July 1995. My symptoms throughout the pregnancy were petechiae, bruising and premature labor. I didn't recognize the symptoms because I knew nothing about ITP.

Upon diagnosis my platelet count was 32,000 and I was assured that upon the delivery of my child I would go into remission from ITP. I took IVIG to allow me to deliver my baby. My son was delivered emergency cesarean section because my platelet count decreased more rapidly than was anticipated. My son has no signs or symptoms of ITP and all blood counts show that he is healthy (He's almost 2 years old).

I did not go into remission from ITP upon the delivery of my son. I was devastated. I started immediately to research all possibilities of treatment, remission, cure, etc. It was very much surprising to me that there isn't more information on this disease available.

It is now June 9, 1997. I am in shock that I have survived the two years of diagnosis, therapy, surgery and doctors. I feel so much more educated because of this disease but I can't help but wonder if I truly needed this type of education. Today I have good news for those that are searching for answers. Please read on to hear how I came across my answer to my ITP. My current treatment may not work for all of you but it should at least give you the incentive to keep looking. No one handed this information to me and I would still be fighting with steroid treatment if I wouldn't have tried this therapy.

I started seeking treatment for my ITP immediately after the birth of my son via emergency cesarean section. It was recommended that I have a tubal ligation to prevent future pregnancies (This is a recommendation that I have not seen repeated in any of the latest studies). My count was too low to have this procedure so I was fighting to get my count safe enough to follow through with the tubal. I had steroid therapy from August, 1995 through January, 1996. My count was finally high enough to have the procedure.

I had the tubal in January - I bruised severely from the procedure but the recovery was fine. I continued my steroid therapy. I was on 100mg Prednisone a day and then I would be weaned down to a lower level. Each time I finished the dose (approx. six weeks) I would end up with no platelets. The steroids worked as long as I continued them at moderate levels.

I hated them and had no intention of living my life with steroids. I let every doctor that I came into contact with understand how much I hated this therapy. I saw five hematologists while trying to find another answer. No alternative therapy was offered.

March 1996, I tried two doses of WinRho within two weeks. No increase occurred from WinRho. Within one month of WinRho my count was at 1,000. My hematologist was out of town and the doctor on call in the emergency room asked what my hematologist and I had discussed concerning the severity of my situation. I didn't have any energy to fight and I just wanted a cure so desperately that I told the doctor that it was discussed that if I dropped so low again I would have a splenectomy. Although I hated the idea, I was very low on energy and tired. I didn't mention that my doctor and I didn't see eye to eye on that suggestion but I just let it happen. I took three, twenty-four hour doses of IVIG to increase my platelet levels. Two days after finishing the IVIG I had a splenectomy.

The splenectomy was a total failure. I was put on Dexamethasone within days of the splenectomy. I switched doctors to a hematologist at Johns Hopkins. Istarted the story all over for him and stated that I hate steroids. He kept me on Dexamethasone but changed the series so it wouldn't be such hard withdrawals and hoped that I would show a better response.

Nothing really changed. I continued to hate my medication, the trips to Baltimore, thefear of having weekly blood tests and the roller coaster ride of waiting for results that I anticipated to be good or bad. To find out I was wrong made me paranoid. I was losing touch with my body and I didn't know what I thought or felt anymore. I had no memory and was feeling lost in my job. I felt that my life was revolving around the doctors that I depended on for everything. I hated it. I took medical disability leave from my job to see if stress was related to ITP.

During this series of events I had contacted NORD to get on their networking program. I received the names of all the members that had ITP for a small donation to their membership service. I wrote to each member requesting what therapies they have tried, how they responded and what their beginning and ending counts were. I desperately wanted to hear side affects because I didn't want anything that had the effects of steroids. I made a chart of their answers and I was set to try whatever therapy was the common link between the group.

I didn't find the common link between the group. At least I didn't think that I did. What I documented showed everyone having different responses to different therapies. None showed a common therapy that put them into remission. I read about IVIG, Steroids, Chemotherapy drugs, Plasmaphoresis, prayers, meditation, God's intervention, diet, Yoga, etc. Nothing reasoned out in my head.

I had already done my version of diet changes. I already sought the help of my Priest, changed my lifestyle, stopped working, and started seeing a gastrointestinal doctor. I started going to school for medical assisting so I could understand what no one was offering. I was ready to quit and face my long future on steroids.

Something in one of the NORD letters jumped out at me. Many of those on the NORD networking list commented on vitamins that they were taking. I started a new log, one that showed what they were taking that they weren't offering credit to. I read about Vit. B complex, Vit. B6, B12, 500mg Vit. C, Iron, Calcium, Multivitamins, etc. It seemed endless. I saw that all of the patients that were at a safe level of 40,00 - 60,000 and were not on therapies included at least 500mg of Vit. C.

I sent a new letter out to the NORD list. I requested any information on Vit. C that they could offer. I received a clinical trial of Ascorbic Acid (Vit C) used on patients with ITP. It showed responses from all age groups, men and women, low levels and higher levels. All needed treatment and all responded to Vit C.

I had started taking 4,000mg when I initially put the link to 500mg from the NORD letters. I made it a point to ask my hematologist at Hopkins during my next visit. In the meantime I received the clinical trial information and I changed my dose to 2,000 mg before breakfast, one time a day in a full strength tablet (not time released).

My count was 22,000 before the Vit. C and within fourteen weeks my count was 72,000. I questioned my hematologist at Hopkins. He knew of Vit C but suggested that is wasn't proven.

I weaned from the steroids and by March I had stopped the steroid therapy totally. I continue today on 2,000mg Vit.C before breakfast. I am sure to drink 64 oz. of water a day to cleanse my system. My last platelet count was 219,000 (10/13/97).

Today is my birthday and I am the happiest twenty-eight year old you have ever seen. I am recently graduated from medical assisting school and going into a new career. I left my old career due to ITP and the theory that it could be related to stress. I am looking forward to a bright future helping others in the need of physicians. My goal is to keep the sensitivity of what it is like to be a patient. I feel this experience has happened for a reason.

I have left a good job in business to enter the medical field to help others. I only pray that my time for learning from my personal experience of ITP is over so I can move past this phase of life.

I am seeing the hematologist that I started seeking therapy with because he is willing to listen to my suggestions on treatment. If at some point in time Vit. C doesn't work for me I want him to allow me to offer my input in my treatment so I can have control in my illness. I will remain on Vit. C forever assuming it continues to work to increase my platelets. There is no remission proven from Vit. C therapy. To me it is better to be on treatment of Vit C than to live on steroids for even one day.