Shannon:
Everyone has a different experience, but I'd say the majority started with many ups and downs.
My experience: I was diagnosed at 50,000 in 1998. I had a physical because I never recovered fully from a cold, and the fatigue lasted weeks and weeks. I was referred to a hematologist and within a few weeks, counts dropped to 8. At that point, the first treatment suggested to me was Win-Rho. I had five weekly treatments which didn't raise my counts at all. Knowing what I know now, I would have never gone back for the second one. I was below 10 the entire time.
Next, we tried Danazol. Again, a bad choice because it doesn't work often and it never works quickly. After a few days, I broke out in hives, so we stopped that. On to Prednisone, 60 mg's. My counts shot up to over 300,000 in a week. I was on that for a few months and all was well. About four months later, counts dropped back down to the 60's. Hemo wanted me to treat - back on Prednisone. Knowing what I know now, I would never do that in the 60's! (The Decadron pulse is different though).
Stayed on Prednisone a few months again, counts shot up, and every CBC after that came back above normal. I stopped going for counts and thought ITP was behind me. Fast forward a year and a half. I saw my GP who asked about my counts. Fine, fine, I say. He talked me into getting a CBC for the heck of it. I did, and counts were in the 30's. I have no idea how long they were there. Back to the hemo. This time I just monitored for a few months until counts were below 15. At that point, back on Prednisone, but this time, I called the shots. I refused a dose above 30 mg's and only stayed on it for a few weeks. Counts went up, but they didn't last. I was on and off of Prednisone for a few years like that until I finally said enough. I had been doing Prednisone every few months. AT that time (2003), Rituxan was getting huge, so I asked if I could try that. We did. I had a good response (over 150) and it lasted 13 months. I went for Rituxan again and only had one infusion due to a reaction, but it was enough to get my counts up to over 150. That was my last ITP treatment, but at that point, I was having Lupus symptoms and have been taking Prednisone for that since. I don't know if the dose I am on (5 to 25 m's) is what is keeping my counts up. I did have two dips into the 60's in that time, but rebounded just fine.
In all that time - from 1998 to 2004, I had mini-remissions. I was on and off of treatments a lot. 6 years of it. I learned to be happy with safe counts - anything above 20 and did not treat unless I got below that. It was doable. I really didn't expect long remissions but was happy when I finally got one. It does get old.
There is no 'normal' with this. Everyone has a different story based on what they have tried and what they respond to. Everyone also has a different tolerance level as to how much they are willing to take. I always refused splenectomy and am SO happy I did because of the direction my health went afterwards. Everything I feared about it ended up coming true, so that was one thing I did do right.
It's only been five months for you. I know that seems long, but it can take a person a year or so to finally get a remission. Hang in there!
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