Welcome, Guest
Username: Password: Remember me

TOPIC: my journey, crazy Emily

my journey, crazy Emily 4 years 4 months ago #49149

  • EmilyK
  • Offline
  • Posts: 452
  • Thank you received: 66
Thank you both so much for the information. I will stay at 12.5 and see what happens.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49181

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1334
  • Karma: 7
  • Thank you received: 326
I think that is wise Emily...the fostamatinib trial sets 50 as target count.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49189

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2339
Emily:

Is your doctor guiding you at all with these doses?

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49196

  • EmilyK
  • Offline
  • Posts: 452
  • Thank you received: 66
My doctor is really kind and not easily concerned. His opinion was to go to 25mg since I was on the 12.5 for 10 days and it dropped pretty rapidly, but he was fine with staying at 12.5 if that was ok with me. He is out of town for a week so I think he was also a little bit concerned about not being able to meet with me if the numbers did something dramatic. I feel like I need to trust my gut and any symptoms I see in making decisions. As a patient, I feel like I can trust myself more these days then what the doctor says.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49197

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2339
The drop was rapid, but it put you right where you should be. It may not stay in the 50's at 12.5 and could drop more, but your counts won't stabilize if the dose is constantly changed. Higher is not necessarily better with these meds. If your count drops, stay calm and ride it out. It takes time to become stable. It seems as though Promacta works very well for you.

Since you trust yourself, while he is away, you'll know what to do if counts get too low.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49218

  • EmilyK
  • Offline
  • Posts: 452
  • Thank you received: 66
Down to 27,000. When the counts went so high, I was still on 10mg of Prednisone. Today was my first day with no prednisone. My goal was to take 2.5 every other day this week and then be done with it. I would prefer to increase the Promacta and still try and be finished with the prednisone. I feel fine on 5mg or less, but I worry aobut the long term effects. I have been on it for 6 months, sometimes at pretty high amounts. I just worry that, like the short increase in platelets after Rituxan, the Promacta had only a short term effect. I know....give it time, be patient...I'm working on it, but this is the safest place to vent. Thanks for listening. The journey continues...
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49221

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
I agree with you, Emily. I was on Nplate with counts going up and down, often as low as 1 but I refused to take pred as I wanted to see what Nplate would do and I thought the pred would cloud things and I'd never get stable. I was also mindful of the steroid side effects. I'm sure I made the right decision.
The following user(s) said Thank You: EmilyK

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49225

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2339
Hang in there, Emily! :)

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49228

  • Taz
  • Offline
  • Posts: 85
  • Thank you received: 3
I would feel the same way, if I were in your shoes, Emily. I think I'd rather go with the promacta alone as well. Hopefully your hemo is willing to see what happens on this route. I'm sure it's nerve-wracking! I'm thinking about you!

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49229

  • EmilyK
  • Offline
  • Posts: 452
  • Thank you received: 66
Fingers remain crossed that it all works out.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49384

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2339
How goes it, Emily? You haven't reported the latest....

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49399

  • EmilyK
  • Offline
  • Posts: 452
  • Thank you received: 66
I am at 74000 so things seem ok. I have been off prednisone for four days. I think it takes about 2 weeks to be metabolized but i could be wrong. I suppose the next few weeks with no prednisone will be the real test. No side effects that i can feel. Thanks for checking in on me.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49401

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2339
Great! Are you still on the lower dose? I think it was 12.5, (but I can't scroll without going to another page and I'll lose what I've written). Looks good this week!

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49407

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1334
  • Karma: 7
  • Thank you received: 326
74 Emily that's brilliant

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49409

  • EmilyK
  • Offline
  • Posts: 452
  • Thank you received: 66
I am very pleased and cautiously optimistic that this will work long term. Amazing to think one pill a day can give me my life back. So glad to be off steroids. They might be a miracle drug but they totally mess with my mind and body. This forum has been the best source of information and support. Thank you all so much.
Don't get me wrong, I still wake up and do the body inspection for bruises and run my tongue through my mouth for blisters or other abnormalities, but i am much less of a wreck before the blood test results are revealed and when they dropped to the 20000, i knew they could come right back and i wouldn't die. Thats a pretty big improvement from january! I even had a glass of wine this week., something i have not done since diagnosis.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49412

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1334
  • Karma: 7
  • Thank you received: 326
Totally agree Emily. This forum has kept me sane. I fought I was going mad on high dose steroids. Am praying Fostamatinib works then I can get off them all together. Am only on 5mg a day now thankfully but would love to be on none at all. May well discuss promacta with consultant if Fostamatinib doesn't do the trick.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49549

  • EmilyK
  • Offline
  • Posts: 452
  • Thank you received: 66
I started Promacta on May 22, 2015 at 50mg and was on 30mg of Prednisone. My count was 24,000.
5/26: 50mg Promacta, 10mg of Prednisone, count 74,000
5/29: 50mg Promacta, 7.5mg of Prednisone, count 196,000
6/1: 50mg Promacta, 7.5mg of Prednisone, count 390,000
6/2: 25mg Promacta
6/3: 25mg Promacta
6/4: 25mg Promacta, 5mg of Prednisone, count 531,000
6/5: 25mg Promacta
6/6: 12.5mg promacta
6/7: 12.5mg Promacta
6/8: 12.5mg Promacta, 5mg of Prednisone, count 472,000
6/9 NO PROMACTA
6/10: NO PROMACTA
6/11: 12.5mg Promacta, 2.5mg Prednisone, count 333,000
6/12: 12.5 Promacta
6/13: 12.5 Promacta
6/14: 12.5 promacta
6/15: 12.5mg Promacta, 2.5mg Prednisone, count 54,000
6/16: 25mg promacta
6/17: 25mg promacta
6/18: 25mg Promacta, no prednisone, count 27,000
6/19: 50mg promacta
6/20: 50mg Promacta
6/22: 50mg Promacta, no prednisone, count 39,000
6/23: 50mg Promacta
6/24: 50mg promacta
6/25: 50mg Promacta, no Prednisone, count 74,000
6/26: 50mg Promacta
6/27: 50mg Promacta
6/28: 50mg promacta
6/29: 50 Promacta, no Prednisone, count 220,000
6/30: 37.5 Promacta
7/1: 37.5 Promacta
7/2: 37.5mg Promacta, no Prednisone, count 522,000

I know it’s a lot of testing. I know the doctor has jumped around a lot on the dose, but I think we didn’t know if it was the Promacta or the Prednisone. Dosing instructions say if the count is between 200,000-400,000 drop the dose by 25mg and wait two weeks and if over 400,000 then stop and test twice a week. I feel like we are “chasing” the number, but I honestly don’t know what to do! Do I drop to 25mg and just stick with that dose for at least two weeks and see what happens? Do I stick with the 37.5 and ride it out and hope I don’t have a stroke? Do I stop taking it and just test twice a week until it drops down to about 25,000 and then start at 12.5?

Any of your wisdom would be greatly appreciated. I have 12.5mg pills, 25mg pills and 50mg pills, so I have lots of flexibility with the dose.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49552

  • EmilyK
  • Offline
  • Posts: 452
  • Thank you received: 66
And I know that I should just have listened to the wise hive and stayed on the 12.5 when the count started to drop. Now, I am just back to where I was then, count too high and who knows which dose I am reacting to at this point. Good gracious, why can't any part of ITP be easy!!
On the positive side, other than that my body seems to love Promacta, I had my first teeth cleaning since diagnosis and it went fine and almost as important, I went for my first run (well I wasn't very fast) since diagnosis. It felt so incredibly wonderful to run, even if only for a short distance at a slow speed.

Enjoy the long weekend. I love you all!!
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49558

  • Rob16
  • Offline
  • Posts: 1118
  • Karma: 2
  • Thank you received: 266
Emily,

As I look at your numbers, and take into account the time delay between changing dose and seeing the effect, I see that on 6/18 you dropped the pred and were at 25 mg. A week later your count was at 74,000 - a good number which I think was based on the 25 mg, not the 50 mg that later caused your platelets to skyrocket.

Of course I am only theorizing, and have only an engineer's feel for numbers to go on, but I would drop to 25 mg. You might end up at 12.5, but if you try it now you will probably overshoot, as your natural TPOs are totally suppressed with your platelets at 500,000. You might even temporarily overshoot at 25 mg. but I would not be too quick to over-correct, or your numbers will just keep bouncing.

That is my two cents worth.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49561

  • EmilyK
  • Offline
  • Posts: 452
  • Thank you received: 66
Rob,
Thank you very much for your thoughts. An engineer brain is exactly what is needed! It is amazing how fast they can go up and down. Since I reacted so quickly, I thought maybe my bone marrow just needed a reminder of what it was supposed to do and maybe I would not need any drug help, but that thought quickly went away.
Emily
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49562

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2339
What a mess! Sorry, but it is. :huh:

First of all, your doctor should actually know what he is doing if he prescribes a drug like this. That upsets me. You're right, you are chasing the numbers. I'm frustrated and it's not even me! The huge swings are just as dangerous, if not more than, low counts.

Emily, I think that no matter which dose you choose, 12.5 or 25, you have to stick with that same dose for several weeks. If counts drop, you have to ride it out and see what happens. I'd stay away from the 50 mg. dose since you seem to be very responsive. My initial feeling is to stay with the lowest possible dose (12.5) for about a month and see what that does, but knowing you, if counts drop you'll get scared and over-compensate. You might be better off at the 25 mg. dose and if counts are still too high, you can lower the dose. You can't stabilize if you don't keep a steady dose. Counts will continue to see-saw.

You'll get there yet! But ya gotta stop messing with the doses!

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49564

  • EmilyK
  • Offline
  • Posts: 452
  • Thank you received: 66
Sandi,
I have only "known" you for 7 months and yet you know me so well! This time I am committed to picking a dose and staying there. I am more terrified of a stroke than low numbers at this point. I was all set to stay at the 37.5 no matter what and then I went today and saw they spiked up so high I almost started crying. I will do the 25mg and stick with it. I should also probably stop going 2x a week, but I get so curious!! The funny part is that Dr. Provan recommended the Promacta on the theory that the swings would be less than NPlate--guess he hadn't met my platelets!! I sent him an email as well for suggestions and will share those if he writes back.
Emily
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49566

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2339

EmilyK wrote: The funny part is that Dr. Provan recommended the Promacta on the theory that the swings would be less than NPlate--guess he hadn't met my platelets!! I sent him an email as well for suggestions and will share those if he writes back.


Your platelets are not the reason for the swings....the doses are! You would be more stable on Promacta if it were dosed correctly. Let me know what Dr. Provan has to say.

Ha ha, yes, I do know you, Emily! It isn't hard. :)

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49571

  • poseymint
  • Offline
  • Posts: 551
  • Karma: 1
  • Thank you received: 142
I totally agree with being more terrified of a stroke than low platelets. Thats how I have always felt about Nplate and Promacta. Other people seem comfortable with numbers in the normal (150+) range and sky-high but I've always felt it was very dangerous.

As I look at your numbers and doses, I agree with Rob. I think you made a mistake by increasing the dose from 25mg to 50mg on 6/19. Just my opinion but 27,000 is a fine number for most people. No need to change the dose there or earlier when you were taking 12.5 and count was 54,000.

The way I see the TPOs is that the platelet count should hover around 50K. To me that means between 20K and 80K. Maybe you have a different range that feels right. You'll get more comfortable as time goes on and you get to know where you are safe. good luck

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49575

  • Rob16
  • Offline
  • Posts: 1118
  • Karma: 2
  • Thank you received: 266
Emily,

Did Dr. Provan (or is it Mr. Provan over there?) tell you what he thought a safe platelet range should be?

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49583

  • EmilyK
  • Offline
  • Posts: 452
  • Thank you received: 66
Dr provan siad a safe range is 30,000-50000. He thought I should stop taking it and then start again at 25mg once the number comes down.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49585

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2339
You won't get better advice than that!

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49589

  • EmilyK
  • Offline
  • Posts: 452
  • Thank you received: 66
Agreed. Now i just need the willpower to make it happen!
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49591

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2339
Too funny, that is the line I was thinking but did not say! :P

The question is, at what point do you start taking it again? (And don't say 400k)

Please Log in or Create an account to join the conversation.

my journey, crazy Emily 4 years 4 months ago #49598

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1334
  • Karma: 7
  • Thank you received: 326
Makes sense to me Emily

Please Log in or Create an account to join the conversation.

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo