Merry Christmas

I check in periodically to see how the majors are doing and hope that you are all well. My ITP remains in remission. I have stayed at 330,000 plus or minus 10% platelets now since two weeks after I was diagnosed with zero platelets. It is hard to believe that it has been nearly two years since I was diagnosed. What a scary thing that was. I have had a severe repetition nerve injury from walking on the treadmill! Severe pain for four months, beginning in May and ending in September when I finally went to a neurologist and was put on lyrica. Lyrica, as expensive as it is, gave me back my life. So one thing after another at my age, but hanging in there and know you are as well.

Roberta - so nice to hear from you! I'm glad your counts are holding so well.

I'm also glad to hear that Lyrica is working so well. I was on it for about a month a few years back and it did help a lot, but the side effects were too bad to continue. I didn't know where I was half the time....wicked drug for some!

Thanks for checking in...I hope you continue to do so.

My neurologist said generally when people do not do well on lyrica, that they were given too much, too soon. He gave me 50mg for two weeks, then 100 for a month, then 150. I have not needed more than that and am dropping down to 100 as soon as my current prescription is done. The main problem with the lyrica is that medicare doesn't cover it, so the cost is $300 a month, which stinks. I have medicare part D, I think it is, but that pays nada for lyrica. It said it is not helpful in my situation which is news to me.

I did go up in dose slowly, even slower than was prescribed. It worked miracles, so I was disappointed when I had to stop taking it. I quit cold turkey which probably wasn't a good idea because withdrawal was horrible. I was still working when I was on it which could have made a difference. I was sleeping in and late for work, easily overwhelmed and confused, and just couldn't keep up. I've thought about trying it again now but when I brought it up with my doctor and asked for a low dose, I got the "that is not a therapeutic dose" speech which I've heard before. So what, if it works?

I have a hard time with insurance with many of those drugs. If it's not FDA approved for a specific health issue, they deny it for the purpose I need it for. Then it's on to appeal which is usually approved in time. I think that's pretty standard. I'm eligible for Medicare in April and don't like what I hear about coverage. I'll need a good supplemental plan I suppose.

Merry Christmas!