ITP Since Childhood

[Ajohn42]

Hi, i am John. Suffering from ITP since childhood. Spleen removed when I was 13. Relapsed when I was 33. Now again platelets went down to 5K. On Revolade 50mg for 21 days and Dapsone 100mg. Still platelets shows as 7K. How much time will medicines take to increase the count. What things I should avoid. Always worried for bleeding. Please suggest who are in similar situations. Thanks

[sharroN42]

Hello Ajohn,

There is a list of foods and drinks one should avoid that you can find on this web site. It includes alcohol, coffee, green tea (black tea is ok), omegas, fish, blueberries, garlic, ginger, and, in fact, most anti inflammatory foods that are good for us in so many other ways. If not on this site do research it. I often check on “ITP and ——“. I do find papaya leaf juice helpful but it doesn’t seem to help everyone. Good luck.

[Ajohn42 in reply to sharroN42]

Thanks Sharron42, your Advice is really helpful and will follow it. But ginger and garlic paste is in almost every indian curry food we have. Can't i even take that.

Regards

Ajohn

[sharroN42 in reply to Ajohn42]

Hi Ajohn,

Indian food is my favourite cuisine -- very tasty and very good for you. My haematologist has said one has to live -- so carry on. At least our brains and other parts might be healthy. So many on this website have also said treat the symptoms, not the numbers, so if you feel relatively well try not to worry. Also -- try the papaya leaf juice. You should be able to find it at a much better price than I pay in Canada.

Regards,

Frankie

[Kyriak51]

Hi John my name is Georgia I live in Chicago USA, I was diagnosed in early 1990’s after a serious postoperative infection requiring triple IV antibiotics for 10 days. Thank infection overwhelmed my immune system which trigger the destruction of my platelets. I failed Dexamethasone, IVIG and Rituxan before starting Nplate weekly infection in 2010 to maintain my platelets between 30-80 thousand which is good enough o maintain a fairly active lifestyle.

As you know there is no cure at this time but research is on goining. A healthy well balanced diet is essential for physical/emotional health but I know of no foods that will increase our platelet counts. However, there is a body/mind connection at least in my case. Infection, pain, increased stress and depression have a negative impact on platelet counts for example when my childhood friend died and I cried for a week my platelets dropped from 50K to 14K and didn’t return to baseline for several weeks. My only suggestion is to eat healthy, exercise and spend time friends, laugh a lot and wait for a cure

[Ajohn42 in reply to Kyriak51]

Thanks Georgia for a wonderful suggestion. I think this is the case with me as well. i was admitted in hospital with 5K platelets on 31st Jan and medicines started working and count reaching to 21K in a week. Suddenly i got a call from my boss that i may have to loose my job soon and 31-Mar will be my last working day. I am so much worried now as this job is so much i need. My platelets reduced back to less than 10K in a week and are not coming up. I am trying hard to not think of it anymore and let god decide and open another door for me but somewhere back of my mind, the thought of loosing my job keep coming back to me. I 100% agree that stress and depression plays a major role in this. I hope the medicines shows some trick and the count at least goes up to 30K.

Regards

AJohn