ITP EXPERIENCED FROM BOTH SIDES OF THE POND By Patricia Conry

ITP EXPERIENCED FROM BOTH SIDES OF THE POND By Patricia Conry

When I was living in the USA during July 2010, I found that I was losing weight and losing hair. I decided to visit my local practitioner in hopes that a medical examination and blood test would provide me with some answers. The complete blood count showed that my platelets were only 61 K/mcL. Previous blood counts in the last few years showed my platelets ranged between 267– 332 K/mcL

 Why the sudden drop. How did this happen.? I don’t know. Does anybody know? I don’t think so.

I was referred to a specialist in oncology and hematology. I asked for a reason why this happened. He guessed it must have been a virus. When I asked him to explain the ITP disease, he printed up the disease from a web site for me to read. I made three guesses of my own ideas as follows.  I had recently suffered a terrible shock regarding a sudden unexpected death of my husband.  I worked with radium to a small extent when working with patients at Guys Hospital in the 1960’s I was suffering extreme anxiety and stress at that particular time. Looking back I realize that it was also a learning experience for my practitioner because only rare cases came on his doorstep.

Immediately, I started keeping a running chart of my platelets counts and events during the past 11years. This has proved to be an accurate reference for me

The doctor monitored my CBC for platelets over the next couple of years where my platelets remained mostly in the 40’s and my only symptoms were some bruising and tiredness. My monoclonal were 5gl/L.      However in the spring of 2012, when in the USA, I had severe bleeding from my colorectal area and was placed on medication to help increase my platelets. For the next 24 days my medication included prednisone 60mg, which increased my platelet count, then a gradual reduction of prednisone.  However I was having nasty side effects which included unsteady gait when walking , I developed myopathy,  my potassium became low , I couldn’t sleep at night and I was very nervous during the day .  I called my medical clinic, but the nurse denied that my side effects were caused by prednisone. She told me I may develop a moonface but that was about all.  Actually the moon face suited me perfectly as it looked like I had finally gained some weight!. I was totally frustrated until I found a book via PDSA with their informational   pamphlets describing ITP and treatments.  This  book  was entitled “Coping with  Prednisone”  written by Eugenia Zukerman and Julie R Ingelfinger MD,  who had herself experienced  the side effects of  prednisone. This book really helped my mental health and coping mechanisms with these side effects, knowing that this author had the same experience and even worse than mine which helped me to cope with all the side effects I was having. I have recommended this book to others who needed help.

In May 2013, 2 months after completing a prednisone, course, I had another episode of severe bleeding in the USA, which led to my succumbing to colorectal surgery. The surgeon stated that   to proceed with surgery I needed   to increase my platelets to 100ug/dl as they were only 64 K/mcL So once again in order to have surgery ,I was placed on prednisone . I continued taking prednisone after surgery, for 95 days and suffering side effects.  

After recuperating from the surgery,  I came home to UK to care for my mother, then in her 90’s. (This  November 17 2021 she turned 100yrs old).  I was still taking the prednisone at that time and   I checked with my local GP regarding my ITP and prednisone treatment. The blood test revealed that because of the long course of prednisone I was taking I had now developed diabetes.  My doctor here in the UK immediately called my doctor in USA, alerting him and asked that I should be now be reducing and stopping the prednisone.    I was so thankful to have seen my doctor at the Selsey Medical clinic in W. Sussex.

When I returned to the USA a few weeks later, I suffered nasty withdrawal symptoms. This included severe pain in my right shin started when I  was in  bed , and mysteriously disappeared after 4 weeks, also  pain and swelling in left foot, and  a pain in my trochanter hip  region for 7 weeks although no injury was sustained in any of these areas,

My next adventure included the fact that I needed a meniscus repair in my knee. However my platelets were too low to enable the surgeon to perform.  I thought perhaps I could heal myself instead of taking prednisone to increase my platelets. Actually my meniscus did heal without surgery.

Later in the year I had surgery to repair a abductor tendon on my Left hip. I don’t know if the tendon tore because of the prednisone I had taken earlier,

A year later, once again I had severe bleeding from my colon and was hospitalized for 5 days and was diagnosed with ulcerative colitis for which I now take medication regularly.  Since then to my dismay I have I also developed various food allergies.

The first really positive treatment event for me was when in the UK in in October 2014 when some bleeding occurred and my platelets were 26 K/mcL and I was given Vigam immunoglobulin IVig at Fernhurst cancer unit at St Richards Hospital in Chichester , W. Sussex ( part of University Hospitals Sussex)  The care there was absolutely wonderful,  and beyond my expectations.   Since October 2014  until now, I have received IVig periodically for my  ITP which help to keep my platelets above 30  .However I do endure some bleeding episodes periodically  when my platelets drop below 30ug but  I am able to cope successfully.

Now for the bombshell. When I was due for my IVig in August 2021, I was told that there was no IVig available in this country or any other country, because people were not donating blood now, because of the Covid 19 virus.  So now the physician at the  Fernhurst clinic  has changed my treatment and prescribed 50mg of Eltrombopag  (Revolade) daily. My platelets last week were up to 62K/mcL.

Now for something very important for all of us to know, is the existence of our support groups both in USA and UK. As a nurse when in the USA working, it came to my ears that there was a support group for patients who had ITP. In the USA this support group was founded by Caroline Kruse who, she herself suffers from ITP and she felt that there should be a means to support others who endure this rare disease. This is the Platelet Disease Support Group i.e PDSA, which has a board of directors and medical advisors, headquartered in Cleveland Ohio, USA.   Dr. Bussel, one of the medical advisors  knowing that I was British and on my way back to the UK, directed me to visit Professor Adrian Newland In the UK.  It was a delight to meet him in his office. The PDSA has about 52 support group in different regions of USA including Canada and New Zealand. However we have now expanded to other countries around the world.

  I joined the support group in Brown Deer,Wisconsin which was close to my county in USA.  This was a fantastic group where I felt quite at home sharing experiences.  I learned more from this group than reading any text book or any general practitioner ( except on finding a rare ITP specialist)   Because of this experience I felt it urgent to become a support facilitator in Chichester, W.Sussex, UK, close to my residence here. I was encouraged by Mervyn Morgan our chief executive for The ITP Support Association headquarter in Bolnhurst, Bedfordshire. Both the PDSA in USA and ITP Support group in UK have a magazine with tremendous articles and pamphlets which describe ITP. Both the group in USA and UK has their own annual conference once a year. Fortunately since lock down, we have been able to use Zoom for both National conferences one in USA, and one in UK . Also both countries have regional support group discussions via Zoom at present.

Now to recount my latest travel episode to USA in May 2021. I received my Covid 19 vaccination in February 2021 so decided to travel to USA in March. However my Covid PCR test showed that I was positive 3 days before I was due to travel so I postponed my trip and went instead during May 2021 for 6 weeks. There was certainly copious forms to complete to support why I needed to travel thus were only 26 passengers on that particular jumbo jet. I was certainly lucky to have had so many seats to myself.

I am careful when travelling back and forth between USA and UKI carry prednisone and Tranexamic Acid  with me .

I returned to the UK at the beginning of July. In order to depart from the USA ,I needed a negative PCR test within 3 days of boarding the plane and also proof that I had booked and paid a UK lab to provide Covid tests on the 2nd and 8th day of return to London and to quarantine myself for 10 days. I plan to return to USA in January and I am wondering what the rule will be then?