Need to vent!

I don't know if there is anyone out there that can relate to this, but at least you fellow ITPers can sympathize. I was diagnosed at 16 with ITP, did the IVIG route...didn't sustain the counts, tried the Prednisone which worked wonders, but when I stopped, my count would drop right down...had a splenectomy because that is what they did back in 1988. Since my splenectomy, I have only had relapses from time to time after a fever and swollen glands. I had one 18 months after my splenectomy which only lasted a couple of weeks, another when I was 24 that lasted about a month, another when I was 28 which lasted about a month, another at 34 which lasted about 6 months with a very slow taper of Prednisone and now I have been in a relapse for about 2½ months after being sick for about 2 weeks back in March (I am 44 now.) So I switched hematologists in the middle of this relapse. Right away I was cut down to 10/5 mg (10 one day, 5 the next) of Prednisone for a week. I have never tapered that quick off of the Prednisone and I warned the Hemo that the taper was too fast. He wouldn't listen so I did what he told me...10/5, 10/5 for a week. Walla...counts went from 153K to 44K in a week. So he said stay at 10 mg. Then they went up to 56K, then 62K ....still wanted me to stay at 10 mg, dropped to 44K and now I am down to 28K! I am furious. Now he wants me to go back to a full dose of Prednisone and start over. I am not happy about this at all. If he had listened to me to begin with and I stayed on a slow taper, say 20 mg, I don't think I would be here today. I have agreed to up to 20mg and go back in 3 days for another count. If it's not up then he wants me to go higher, to at least 60 mg (I won't agree to go any higher because of the side effects.) I know my own body and I just think I could have saved myself all of this trouble if he had just listened to me. Has anyone had a similar experience? I just hope that the quick taper does not prolong this episode. Did I mention that I hate ITP?

Unfortunately, some doctors do not listen to their patients. He should have realized that you know your body better than he does. Sorry you have to go back up.