Just found this site and have already read so many posts that give me hope :)

Hi my name is Rickey and am 34 and i have itp, was diagnosed a little over a year ago, my levels have varied dramatically lowest being 12. They have tried the prednizone, which worked for a week then stopped, the Nplate shot, which didnt work and lastly the promacta which i have had some success with in the past until my ins said it wasnt "medically neccessary" now they are trying to get me "free drug" so i can get the meds that work. Just am confused about why the ins company is allowed to deem what is medically necessary and what isnt. Long story short itp sucks and has turned my world upside down, its nice to know there are other people out there who has this. I dont feel so alone now ❤️

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  • Hi this is a great site and the people on it very caring I only found out I had ITP about 5 months ago I found this site then, it has helped me to understand that you can live with ITP and are not alone. My count keeps going up and down the lowest being 33 the highest 2 weeks ago 106 and this week 52. Luckily I have not been given any treatment to date they are just monitoring me.

  • Rickey,

    There is no good explanation for the sometimes terrifying decisions made by insurance companies nor for why they get to make these decisions. Are you living in the U.S.? Your doctor's office might be able to help you negotiate with the insurance folks or assist you in requesting an appeal. It's awful enough to have to deal with ITP; having medication that works denied you is infuriating and frightening.

    If you are not in the U.S., others here may have some useful advice.

    Ruth

  • Hi there. To give you some more hope, I have had ITP for 20+ years with a count around a steady 10. After trying most drugs, and pre TPO, I was taken off all and lived a very happy and full life without.Luckily I am not a bleeder. I changed my life style a little and stopped skiing but apart from that no problems. Fatigue plays a part, but you learn to live with that.So all I can say is, don't worry and get on with your life and enjoy it. There are far worse medical conditions in the world that will kill you. Good luck.

  • My count has been at the very lowest 2, I am holding my own for the past 8 months with a count over 200. I have been thru it all including a splenectomy. The very best you can do is educate yourself about ITP, I started off real scared, not knowing whether this would develop into Leukemia. Since educating myself I am no longer scared and now without a doubt I can live a very long life with ITP, I even have a plan for the next time the count drops, rituximab, IVIG, definitely not Prednisone, if I have to go back on prednisone I have decided I will live with a low count and just be very cautious...I wish you all the best, you will get thru this, may god bless and just know your not alone.....

  • Snap! My lowest count was 12 also when I was diagnosed and I receive Romiplostin injections (nplate). I am sorry you are experiencing difficulty in obtaining treatment for this worrying and inconvenient auto immune condition. I am so lucky living in UK and benefitting from our NHS it is upsetting enough having health problems without having the worry of how to pay for the medication you require. Interesting that your Insurance company deem that your medication is not medically necessary and yet my travel insurance co refuse to cover me for my ITP recognising the condition too big a risk for them. I hope you get medication to help you live a worry free life.

  • Hi Eileen Emily. How have you found the nplate injections. Any side effects? Has it work ed? Do you feel better?

  • The only side effects I appear to experience are some joint stiffness but there again I am 70 and some facial acne now the oldest teenager in the business! Really a small price to pay to keep the platelets up. Eltrombopag tablets were suggested and they could have been so much more convenient than injections but I have another liver auto immune condition that prevented that treatment but may be useful for you. Drawback with the tablets no calcium 4 hours before taking and 4 hours after so I was all set for no calcium after 8pm take the tablet at midnight and sleep through the next four hours but hey ho not to be but like I say may be useful for you.

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