I would like to add to Robert’s story if I may, and tell you about my experience with ITP.
I lived in Australia at the time but was on holiday in New Zealand when I was diagnosed. That was two years ago in December 2012. I was 57 and had a platelet level of 4,000. Before this time I had previously been fit and healthy, although recently under a lot of stress. Over the course of the first year I was on the same roller coaster Robert describes. I had all the tests and infusions. My platelets went up and down, and the dose of Prednisone increased or decreased to try and manage it.
After being on high doses of prednisone for so long the side effects were awful. I didn’t recognise the big moon face staring back at me from the mirror, and my brain was in a fog. Because of this fog I went along with what the doctors were telling me. They had said at the beginning my best option was to have my spleen removed. I resisted for as long as I could, but in October 2013 I finally gave in because I had to get off the prednisone. After the operation my platelets went from 6,000 to 665,000. Things looked promising and I started to reduce the dose of prednisone very slowly. But less than four weeks later they had plunged to 9,000. The splenectomy was a failure and I had to increase the prednisone again.
I didn’t want to accept what everyone says about ITP; that there is no known cause and no known cure. With my platelets hovering between 13,000 and 73,000, over the next two months I wracked my brains to try and think what might have happened in my body to cause my immune system to go haywire. It took all of that time to realise it was actually a chain of events that triggered it. I believe it started with my overuse of Nurofen which I was taking for chronic back pain. Nurofen contains the analgesic ibuprofen, an NSAID. Nurofen is known to damage the intestinal lining if overused, causing a permeable gut. I only discovered this after I had a bleed. I stopped taking it immediately but by then the damage had been done.
With toxins now leaking from my gut into my body, my immune system went into overdrive. This led to an acute sensitivity to salicylates, a naturally occurring chemical found in most foods which I’d had in a mild form all my life without realising it. Now I had IBS in a big way but still didn’t know it was salicylate intolerance. It started very suddenly and at first I thought it was gastro. But it kept happening after nearly everything I ate. I was losing weight fast. My doctor sent me for lots of tests which all came back negative. He didn’t know about salicylates so just said to take antacid when I needed it.
I only found the solution by looking on the internet. So I changed my diet to minimise the salicylate intake. After less than a week all my symptoms disappeared and I have kept to a low salicylate diet ever since. I had got my life back! But then a few months later I noticed I was getting a lot of big black bruises for no apparent reason. I had ITP.
What I believe happened is that my immune system was so stressed and overworked from having to deal with the all foreigners in my system from having a leaky gut that it got confused and started to attack my platelets too. I was sure the key to fixing the problem was by improving the health of my gut rather than just treating the symptoms by suppressing my immune system with prednisone.
My doctors didn’t have much faith in my idea so I searched the internet for an answer.
I found a lady in America, Tracey Eakin who said she had resolved her ITP by sticking to a 100% plant-based diet. She was maintaining her platelet count in the lower end of the normal range, without medication. I didn’t know if it would work for me but I had nothing to lose.
Two days after Christmas 2013 my platelet count on the prednisone was quite good: 149,000. But the prednisone was still far too high. At the start of January 2014 I eased myself into the new diet by cutting out dairy. After a few days I felt amazing! I hadn’t even realised how much my eating of dairy foods had been weighing me down. Straight away my platelets went up to 339,000. Apart from immediately after the splenectomy, they’d never been anything like that since my diagnosis. Five days later they went up to 500,000. By then I was in full swing with my new 100% plant-based diet. It was very encouraging. I reduced the prednisone slowly over the next three weeks but the platelets went down too.
By the end of January they were 47,000. But I wasn’t going to give up. My platelets stayed low. My doctor offered me an alternative drug called Eltrombopag – also known as Revolade, which doesn’t suppress the immune system but increases platelet production, the same as Romiplostin. When I started on it my platelets were down to 13,000 but they quickly went up. But it was just another rollercoaster I was on and I had to stop taking it when they got to 400,000. A few days later the platelets plunged again to 27,000. This happened a few times over the next three months.
I was still sticking rigidly to the diet all this time, hoping I was mending my gut so my immune system would have less work to do and start to recognise the error of its ways. On August 7th 2014 my blood test showed a platelet count of 68,000. Four days later it was 1,015,000. I immediately stopped taking the Eltrombopag. Three days later the platelets were 2,300,000. Three days after that they were 2,700,000. Something was going on! Over the next ten days they slowly went down, and on August 28th they were 967,000. Two days later they dropped to a more realistic 579,000 and have stayed consistently around the mid-400 mark ever since. This is without any prednisone or Eltrombopag. It has been nearly seventeen weeks now.
Since being on the diet I have got my energy back and I can think clearly again. I haven’t felt so good in years! It is quite a challenge to change your diet and it needs a great deal of determination to stick to it. But for me it is infinitely better than the alternative: a lifetime of medication. Of course it is early days yet and I want to get a few more runs on the board before I declare it a raging success. But so far, so good.
My haematologist had told me my ITP was the most difficult case she has ever had. She can’t quite believe what has happened. Now every time she emails me with my blood results there is an exclamation mark beside the number! But finally she does now agree that there might be a correlation between the health of the gut, the immune system and ITP.
Of course everyone is different in how their bodies react to different treatment and medication, but I hope my experience will give encouragement to other ITP sufferers.
I should just add to my post above, that the reason a 100% plant-based diet is recommended for people with autoimmune diseases is that the immune system regards animal protein as foreign and works harder as a result. So with fewer enemies to fight it can get on with keeping the rest of the body healthy. Fewer cancers too, according to various things I have read.
Another beneficial side-effect I have noticed since being on the diet is my arthritis has gone. I had given up wearing rings on one of my fingers because the knuckle was so swollen. It had been like that for years but now it is back to normal. Also I don’t have any of the achy joints I used to have. I don’t feel a hundred when I get out of bed in the morning any more!