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my journey, crazy Emily

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 3 months ago #49889 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

Sandy,
Thanks for the resposne (as always). Yes, 25mg every other day. I will get tested again on Thursday and they will look at my lovely spider bite (the only advantage to seeing the doctor all the time). After this Thursday, the plan is to only do blood draws once a week. I am nervous (no surprise there), but also glad that the things seem to be much more "under control."
Emily

mrsb04
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ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

10 years 3 months ago #49891 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

Sorry about the spider bite..good news about the count

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #49978 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

145000 today. Next week I go only on Mondays. I am going to try Sandi's old plan to think that the last count is the current count and try not to get anxious about not knowing the actual number.

Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 2 months ago #49979 by Sandi

Replied by Sandi on topic my journey, crazy Emily

You can do it! This is a good thing, Emily. Going less often can actually lessen the stress because you are not dealing with or focusing on it as often. I never went more than once a week, even when counts were below 5k. It was what it was and I only worried if I had symptoms. If I did, I'd just go in for a count. They let me walk in any time during my lunch hour.

Are you still going to do 25 mg's every other day?

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #49980 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

Yes. 25mg every other day. Sticking with the plan.

Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 2 months ago #49981 by Sandi

Replied by Sandi on topic my journey, crazy Emily

Excellent! You're on the right track now. Next week, if counts are lower than your comfort level, you might try 12.5 daily. Too bad there isn't a dose in between 12.5 or 25 - or is there? That might be the perfect dose for you.

Rob16
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10 years 2 months ago #49983 by Rob16

Replied by Rob16 on topic my journey, crazy Emily

Alternate 12.5, 25, 12.5, 25 mg.? That would be an in-between dose. That is adding 12.5 mg every other day to what you are doing now - maybe just enough for a soft landing.
You might try that schedule starting Monday night, assuming your count is still going down.

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #49984 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

Thanks for the suggestions.

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50066 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

47,000 and my legs both have fairly large sections with petechiae, which has never happened before. In the past, I would bet a few red dots, nothing that looks like the rash on both legs right now. I guess no more skirts above the knee now. Just another ITP bummer.

Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 2 months ago #50069 by Sandi

Replied by Sandi on topic my journey, crazy Emily

Emily, that can happen with a quick drop. Don't worry about it too much. Your counts are still good. Hopefully it will clear up in a few days.

Rob16
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10 years 2 months ago #50073 by Rob16

Replied by Rob16 on topic my journey, crazy Emily

EmilyK wrote: 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.

Great news... you've reached your target! Dr. Provan would now have you start taking 25 mg/day, if I understand you correctly. What are your thoughts? stay at 25 every other day, go to 25 every day, or something in between?

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50079 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

Thanks for asking, the plan now is 25 every day.

Ann
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10 years 2 months ago #50084 by Ann

Replied by Ann on topic my journey, crazy Emily

Emily, that's really good that you've got down to a safer level. The clotting risk has gone which is a good thing. Don't worry about the petechiae, it's temporary.

The following user(s) said Thank You: EmilyK

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50302 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

123,000. I have been on 25mg a day.

Rob16
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10 years 2 months ago #50304 by Rob16

Replied by Rob16 on topic my journey, crazy Emily

Beautiful! Soft landing!

I think you can safely conclude that 25 mg/day is not too little, and minor tweaking is all that might be needed.
When you are ready for that, you might try skipping every 5th or 4th dose, or taking one or two nights off per week. I'm sure you won't mind not setting the alarm for 3am some nights!

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50306 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

Yes, I was very pleased to see that there was no bottoming out! I knew things were better as all of the ugly rash on my legs went away pretty fast. The doctor want me to stay at 25mg per night for another week, but I am thinking it might be time to go to 25mg every other night and see what happens. Ah, the never ending mystery of Promacta dosing!

Rob16
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10 years 2 months ago #50307 by Rob16

Replied by Rob16 on topic my journey, crazy Emily

Going to every other night is cutting your dose in half. That is pretty drastic, and you don't need to do drastic anymore. I wouldn't skip more than two nights per week. That is comparable to alternating 12.5 - 25 - 12.5 - 25 - 12.5 - 25 - 12.5, but a lot less trouble.

mac
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10 years 2 months ago #50308 by mac

Replied by mac on topic my journey, crazy Emily

Emily, I'm so glad to hear things are going better. I've been following your story so closely.

EmilyK
Topic Author
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50309 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

Rob, thanks for pointing that out.
Mac, nice to hear from you. How is your sister doing?

Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 2 months ago #50312 by Sandi

Replied by Sandi on topic my journey, crazy Emily

Emily:

You're on your way now! Great news! The 25 mg's for another week is good and you can go from there.

mrsb04
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ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

10 years 2 months ago #50322 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

Looking good Emily x

mac
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10 years 2 months ago #50326 by mac

Replied by mac on topic my journey, crazy Emily

Emily, She now gets counts once a month. She went last week and her count was 267,000. She is getting a break from treatment for a bit. After the horrible side effects I'm glad she got something out of it. Moat of the side effects have stopped. Praying things settle down for you as well.

EmilyK
Topic Author
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50328 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

Thanks to all of your for your support and understanding.

EmilyK
Topic Author
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50373 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

I was using minoxidil for a few years before my ITP diagnosis. I have very thinning hair and it had started to come out in very noticeable amounts. The minoxidil helped alot. Then I got the diagnosis and I stopped using it for fear it might have been a trigger or a factor. While on prednisone my hair was still staying in my head, but now it has started falling out in large amounts again. I will be pretty balding soon. Not a great look for a woman in her 50s. Anyone heard that minoxdil is an ITP trigger and should be avoided? Not sure I would use it again because I do not want to rock the boat, but just wondered if this has ever come up. May start looking at wigs this weekend.

Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

10 years 2 months ago #50380 by Sandi

Replied by Sandi on topic my journey, crazy Emily

No, Emily. I don't remember anyone ever asking this question. The fact that you were using minoxidil for a few years before ITP appeared leads me to believe ITP wasn't caused by that.

The following user(s) said Thank You: EmilyK

mrsb04
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ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

10 years 2 months ago #50480 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

Emily, Have you tried N Plate before?

EmilyK
Topic Author
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50491 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

I did try NPlate but not for long enough to know how it work for me. Count went down to 4000 and doctor stopped it and did the rituxan. I did know enought hen to insist on staying with the NPlate but the promacta seems to be working so far. We will see what the blood results are on monday. Did you ask for any particular reason?

mrsb04
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ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

10 years 2 months ago #50492 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

need to consider my future options

EmilyK
Topic Author
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50494 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

So far I am happy with the promacta. Wish I had started it the day I was diagnosed. Months of prednisone was so emotionally devastating and such a waste of time. Oh well. Guess you can't know if you don't try! Good luck in figuring out your next step.

mrsb04
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ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

10 years 2 months ago #50500 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

I think I would like to go down the Promacta route but we have very strict guidelines over here in the UK and not sure if I will get it. Will talk to my consultant next week when I got to clinic.
How strict is the no dairy produce rule

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