they go up tiddly up up, they go down tiddly down

My apologies to Cesare Sterbini for purloining his lyrics.

My hematologist just called to give me the results of yesterday's blood draw.
9k ...... ah well ..... "they go down tiddly down down".

So today he bumped the Cellcept dose to 1500mg/day to see if that improves things.
I'll check again next week to see how it works out, then take it from there.

The real bummer is that I asked my wife for a new chainsaw for my birthday.
Now she will probably give me a foam-rubber helmet and some rounded scissors instead!



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Sorry Jack to hear this. Do you think some of your meds might not be agreeing with your platelets now? This has happened to me in the past.

I currently have a "frozen shoulder" that I have the therapist working on. I can't believe all the meds I have had to take to get through this And, after hardly taking anything for almost 4 years!

Good luck to you and hope you are not showing much in the way of symptoms.

Dee Dee

Do you think some of your meds might not be agreeing with your platelets now?

I currently am down to only taking 3 meds; 2 for high blood pressure and generic Cellcept for ITP. I've taken the same HBP meds for around 18 years.
The current situation is probably the same thing that happened when I used Cyclosporine years ago. It worked great for about 2 years, then just stopped working completely. I honestly expected the same thing would happen with Cellcept at some point, so this isn't a shock.
But everything will be great once I figure out how to trim trees with just a butter knife.

Side note of no importance: ITP life always reminds me of when I was a youth living in Wangaratta, Australia. I worked at a textile mill and we were only issued 'rounded' scissors.

Jack, you are probably right about the Cellcept. I just mentioned it because I had taken Sinequan for about 16 years or more and all at once I think it helped to drop my platelets (it's listed as one of the meds that lower your platelets). I stopped it almost 4 years ago for some allergy testing, and once I stopped it, my platelets started going back up.

You know your own body best--and I think better than most doctors. And, sometimes, even if the meds are bad for us, we still need to take them.

Dee Dee

And the count goes right back "up tiddly up up".....isn't this ride fun?

16k on Wednesday, up from 9k last week.
On the one hand, that represents an 80% increase in platelets. Now doesn't that sound uber impressive?
On the other hand, a 7k increase actually means very little. But it is heading in the right general direction, so I will take what I can get.

I continue with 1.5 grams Cellcept and get checked again next week. If that dosage isn't negatively affecting anything, I'll stay with it until it stops working.


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Jack,

That's good to hear!! It's hard to say what makes them go up and down. It's most likely happening to all of us. And, as long as your symptoms are fine, that's what counts. At least overall Cellcept seems to help.

Dee Dee

And then "they go down tiddly down down" all over again.

I returned to work this morning (after a 4-day weekend) to find a message on my phone from my hematologist.
Platelet count has dropped back down to 11k on 1,500mg of Cellcept. Ah well, better than 4k.
We are leaving well enough alone for now. I'll get rechecked in a month. No big deal.
Queue Doris Day music in the background......"Que sera sera....whatever will be will be...."

That was the GOOD news......the BAD news is that last Thursday they changed vendors and removed our coffee machine here on the R&D floor of Engineering. As of this morning, no replacement is installed. No coffee? Oh the humanity!

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Jack,
Since you do so well with your platelets at that level, I, too, wouldn't worry. Our platelets tend to move around each and every day. One day my platelets moved from 12,000 to 31,000 in the matter of hours!! As long as your symptom are in check--that's what matters.

Now, for the coffee, I would complain about that

I'm not worried at all.
Hmmmm......Why am I reminded of an Alfred E. Neuman quote at this point?

Do I come across as worried? It was not my intention at all. If I do, I humbly apologize and I will discontinue my 'progress reports'. The updates are just to illustrate that simply having low platelet counts does not mean the end of the world as we know it. Heck, if I could maintain an 11k range without them, I'd never take another 'ITP treatment' pill. The treatment is generally worse than the disorder.


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I think you do a great job of documenting your acceptance of life with low counts.

As for the coffee....I'd buy a mini two cup coffee maker and make it in my office. Can't possibly work a day without coffee! :blink:

Jack,
Please keep the progress reports coming!!! You are my inspiration!! I like to know that there are ITPer's like you around. Mine were at 11,000 at one time and some of the doctors still freaked out (except for my Hemo--he's getting better).

I feel the same way as you; if they are at 11,000 and you feel okay--that's what really matters.

Dee Dee

Jack you don't seem worried at all. And keep those progress reports coming! They are always full of good information and good humor.

I just wish you could get on NPlate- you tried Amgen copay program I think?? I've become kind of a born again NPlate user- I want everyone to try it.

Sad about your coffee. I don't go anywhere without my Starbucks Via instant coffee. Its totally overpriced but you can mix it with anything, cold water, milk... you can even eat it like Kool-aid, (if you've ever licked your finger and dipped it in the Kool-aid packet). But you probably don't want your coworkers seeing you eat coffee like that- would look like you've sunk really low.

Okay then, I'll rinse and repeat as necessary and update y'all in a month when I get another count taken.

Sandi; .... Yesterday someone had put an espresso machine, 2 tiny cups, and a can of espresso grind in the break room. I enjoy a good double espresso, but not all morning long. I had some nasty instant coffee in my desk that got me through the day (blech). But the the good news is that a spanking new coffee station has appeared in the break room this morning! R&D/Engineering will be able to function once again!

Dee-Dee; .... Yep, low numbers tend to freak people/doctors out unless they know your history.
It may seem evil, but sometimes it's kind of fun to see the expression on an intern's face when they read the number. They get so intensely concerned for my well-being.

Poseymint; .... I hate needles, so did not opt for Nplate years ago when I had the choice of programs.
I'd like to get back on Promacta, as it kept me in the 45k-60k range for three years. I cannot get GSK's assistance now and just don't have the spare $4500 for a max co-pay every year. There are a lot of other things I need to do with that $4500. So it will be $10 generic Cellcept for the time being.


And now....I am off to test out the new coffee machine!

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