I am new here and was diagnosed with ITP when I was 22 (3 years ago). I have tried everything and seen good results but here is an overview of my treatment so far:
prednisone (did for 6 months but would spike then drop in counts)
NPlate- worked and maintained around 50k for a year then was inneffective
Ethrombopag - A medication that take 2 hours after eating and 1 hour before eating, when kept to this rule, was stable and worked keeping me around 60k for a year.
However after this meds seemed to work initially they did not maintain.
So I had my spleen out. I had IViG and prednisone to boost my platelets to 86k before the surgery, and immediately post surgery I was at 132, followed by 176k the following day. I then got shingles the week after surgery and my platelets dropped to 1k. They were at 1k for about four days of which I was hospitalized, on about 125mg of prednisone and 40mg of IViG daily until I responded the third day with my platelets going to 5k, then 16k. I had bad pitichiae all over my body during this time, with gum bleeding and even a little rectal bleeding. It was the lowest recording of my platelets to date.
This was about two months ago, after getting rid of the shingles with the meds they provided in combo with a prednisone taper, my platelets surged to 600k. After a couple weeks they stabilized around 260k. I was able to travel ok, did not have any issues with bruising or pitichia, but recently (two months after the 260k count) I got a head cold and my platelets dropped to 12k. I had two days of IViG and my platelets went up to 76k, and this past week I was at 64k.
I feel ok now, and am not on any meds, but have realized that IViG is only effective for about 3 weeks. So I worry if I will need to go back consistently to have this done to avoid prednisone boosts to spike platelet count. Does anyone have any recommended diet changes or ways to deal with this when getting sick? It seems as if though my immune system really crashes when I get sick, and do not want to have to be hospitalized every time I get a cold. I have heard some good things about papaya leaf extract, but have not tried it.
Any help appreciated! This is a great community and I will be responding to others based on my experience with ITP.