After my first whole week without being stuck by needles since January (my poor arms! the nurse commented this morning that I look like a drug addict :( as she rolled my arm around looking for a fresh vein to stick) I just came back from my test at Dr. Pastore's and platelets have held in the 300s! - At 330k today!!
I have one more week at 2.5mg/day of Prednisone then that dose will only be every other day for a week or two, then I'll be off! I start work again tomorrow... wohoo!
Next test is Tuesday!
Tuesday, March 31, 2009
Wednesday, March 25, 2009
370! Wowza!
Platelets are up again to 370! great! I'm down to 2.5mg of Prednisone now and Dr. Pastore gave me the whole week before coming back for another test :) All good news and I'm so excited everything is going well.
Everyone in NYC is sick again with the icky cold-crud; its been back and forth between spring and winter so the sickness is thriving! - I'm trying my best to avoid it and can only hope that now my immune system is strong enough to tackle anything I do come in contact with. I start work again next Wednesday (yay!) so with any luck I'll be healthy till then, but once I'm walking in and out of Doctor's offices again all day I'll know for sure where my system stands! :)
Next test is Tuesday!
Everyone in NYC is sick again with the icky cold-crud; its been back and forth between spring and winter so the sickness is thriving! - I'm trying my best to avoid it and can only hope that now my immune system is strong enough to tackle anything I do come in contact with. I start work again next Wednesday (yay!) so with any luck I'll be healthy till then, but once I'm walking in and out of Doctor's offices again all day I'll know for sure where my system stands! :)
Next test is Tuesday!
Friday, March 20, 2009
300! Looking good! :)
Platelets today are at 300, up slightly from Tuesday's 278, so its still looking good!
I've been titrated down to the last 5mg/day of Prednisone -such a relief!- and will continue on that dose for 1-2 weeks before they let me go without medication. I'm definitely feeling the lowered amount of medication this week... suuuuuuuper tired all the time, trying to catch up on rest & let my body start to recover from all the chemicals its been processing for the past 3 months. I'm also trying to build back some of my muscle bulk so that going back to work and regular daily patterns in NYC isn't so challenging physically (walking & carrying all day, up & down stairs, through traffic & crowds etc.). If all continues to stay stable life should slowly begin to swing into 'normal' soon!
Next test is Tuesday :)
I've been titrated down to the last 5mg/day of Prednisone -such a relief!- and will continue on that dose for 1-2 weeks before they let me go without medication. I'm definitely feeling the lowered amount of medication this week... suuuuuuuper tired all the time, trying to catch up on rest & let my body start to recover from all the chemicals its been processing for the past 3 months. I'm also trying to build back some of my muscle bulk so that going back to work and regular daily patterns in NYC isn't so challenging physically (walking & carrying all day, up & down stairs, through traffic & crowds etc.). If all continues to stay stable life should slowly begin to swing into 'normal' soon!
Next test is Tuesday :)
Friday, March 13, 2009
Down a bit to 288, still very good! I'm happy :)
So the number dropped a bit more today but high 200s is still very safe. I don't have any colds or anything (that I know of! fingers crossed) and I fell ok so theres no reason to suspect the drop is anything but a fluctuation.
No word yet from Aetna on the Rituxan... but hopefully something will come through on that soon.
I am feeling good, coming down from the prednisone is introducing a few interesting withdrawl symptoms (very tired, slow & spacey mind, hot/cold flashes, all over body aches & skin sensitivity...) not fun but better in my mind than the full blast 60mg side effects, so I'll gladly take it! Hopefully within the next few weeks I will have only vitamins left to swallow each day and my body can start working on its own & flushing all this medication OUT! :)
Next test is Tuesday!
No word yet from Aetna on the Rituxan... but hopefully something will come through on that soon.
I am feeling good, coming down from the prednisone is introducing a few interesting withdrawl symptoms (very tired, slow & spacey mind, hot/cold flashes, all over body aches & skin sensitivity...) not fun but better in my mind than the full blast 60mg side effects, so I'll gladly take it! Hopefully within the next few weeks I will have only vitamins left to swallow each day and my body can start working on its own & flushing all this medication OUT! :)
Next test is Tuesday!
Tuesday, March 10, 2009
Holding steady at 344!
This is about the same as last Friday which is a welcome sign! Stability in this range is a very positive thing, and while I don't expect to keep platelet counts averaging this high forever I'm certainly happy to see them stick around for more than a single test!
Last week Dr. Pastore informed me that after pre-approving my Rituxan treatments (which he was careful enough to call and ask, since the drug is not indicated for TTP and considered experimental treatment) Aetna decided to decline coverage when they got the bill :( So he did some reading up on Rituxan use in TTP and is sending in an appeal asap, which I fully support since he guessed the treatments cost about $5,000.00 per bag (!!!!!!!!)... yeah, I've had around 7-10 bags... really hoping this appeal is successful.
In his reading he said that others who tried Rituxan for treatment of TTP saw a response in their blood tests & platelet levels around weeks 5-8 post treatment initiation. Thats right about where I am now from my first drip treamtent in the hospital during my first relapse stay, so it looks like the Rituxan is definitely having some positive effect! Which is very comforting after all the negative effect it had on me initially (not so much fun to recover from, but I'm liking the long term results this week!).
Next test is Friday, we'll see if that pricey stuff holds my levels till then!
Last week Dr. Pastore informed me that after pre-approving my Rituxan treatments (which he was careful enough to call and ask, since the drug is not indicated for TTP and considered experimental treatment) Aetna decided to decline coverage when they got the bill :( So he did some reading up on Rituxan use in TTP and is sending in an appeal asap, which I fully support since he guessed the treatments cost about $5,000.00 per bag (!!!!!!!!)... yeah, I've had around 7-10 bags... really hoping this appeal is successful.
In his reading he said that others who tried Rituxan for treatment of TTP saw a response in their blood tests & platelet levels around weeks 5-8 post treatment initiation. Thats right about where I am now from my first drip treamtent in the hospital during my first relapse stay, so it looks like the Rituxan is definitely having some positive effect! Which is very comforting after all the negative effect it had on me initially (not so much fun to recover from, but I'm liking the long term results this week!).
Next test is Friday, we'll see if that pricey stuff holds my levels till then!
Friday, March 6, 2009
Platelets down to 333 but still in a very good zone :) I'm happy!
Having platelet numbers in the consistent 400's is a pipe dream for me :) or any TTP'er for that matter, so I'm not surprised by today's test result being lower than Tuesday's.
That does not mean that I am unhappy by 333... its a lovely number, and very well into the safe zone (200-500). My MDs tell me that once in remission its likely that my average platelet count will be around 200-250, as most TTP patients never have a high level consistently. Untill then, I expect my number to float up and down trying to find a happy medium. As long as it doesn't fall too low (below 150) during the floating everything is fine :)
The best news this week is that I am finally starting to sleep again! I've been getting about 5-6 hours in a row each night and tired enough to sleep longer sometimes too. This is such a relief after about 1.5 months of 1-3hrs/day. I wouldn't be surprised if my body just wants to sleep for the next three months to catch up!
Next test is Tuesday~~
That does not mean that I am unhappy by 333... its a lovely number, and very well into the safe zone (200-500). My MDs tell me that once in remission its likely that my average platelet count will be around 200-250, as most TTP patients never have a high level consistently. Untill then, I expect my number to float up and down trying to find a happy medium. As long as it doesn't fall too low (below 150) during the floating everything is fine :)
The best news this week is that I am finally starting to sleep again! I've been getting about 5-6 hours in a row each night and tired enough to sleep longer sometimes too. This is such a relief after about 1.5 months of 1-3hrs/day. I wouldn't be surprised if my body just wants to sleep for the next three months to catch up!
Next test is Tuesday~~
Tuesday, March 3, 2009
Up to 439!! Holy Moly!
Wow. I am amazed. I don't think I ever had a reading this high even while in the hospital and on Plasma Pheresis... this is fantastic news!
Dr. Pastore is thrilled, tomorrow I can titrate down to 15mg of Prednisone for the coming week (wohoo!!) and hopefully my numbers will continue to stay high as I get weaned off the steroids completely (probably by the end of March if all goes well). I asked what he thinks is the reason for the sudden success with my tests and he threw his hands up and said "Who knows! But I'm happy for you!"... very nice, not very helpful but very nice :)
Well lets hope that whatever is working now continues to do so! Next test is Friday morning!
Dr. Pastore is thrilled, tomorrow I can titrate down to 15mg of Prednisone for the coming week (wohoo!!) and hopefully my numbers will continue to stay high as I get weaned off the steroids completely (probably by the end of March if all goes well). I asked what he thinks is the reason for the sudden success with my tests and he threw his hands up and said "Who knows! But I'm happy for you!"... very nice, not very helpful but very nice :)
Well lets hope that whatever is working now continues to do so! Next test is Friday morning!
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