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Booo!

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12 years 11 months ago #33598 by AmyB
Booo! was created by AmyB
Got this morning's CBC results in: P's are at 5.
Waiting on a call back from my hematologist but I am assuming this means I will be back on
low dose of prednisone, again.
Boo!
Hiss!

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  • Melinda
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12 years 11 months ago #33600 by Melinda
Replied by Melinda on topic Booo!
That's the pits! Can't remember if you have discussed other treatments with your hematologist - I know prednisone is no fun.

Not long till your appt with the endocrinologist - my MD didn't want to treat my thyroid since I have ITP so he sent me to an endo [this was 2003] and I do like having someone who is very familiar with what goes on with the thyroid :)

Keep us posted [I read more than I post - guess like you I'm a creeper ;) ]

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12 years 11 months ago #33601 by AmyB
Replied by AmyB on topic Booo!
I've done pred, IVIg, and Rituxan so far...all to no avail.
Waiting on insurance approval for NPlate. But if I don't get approval,
Amgen has a Safety Net program that we can look into which helps cover the cost of NPlate.

June 24th is my Endo. appt so I am hopeful once I get the thyroid antibodies addressed, the p's will start behaving better.

Anyway, thanks for the encouragement!
I'll let you know what happens...

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 11 months ago #33604 by dru
Replied by dru on topic Booo!
Sorry to hear this....... Hope you can get the nplate started soon!
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12 years 10 months ago #33608 by Vdeutsch85
Replied by Vdeutsch85 on topic Booo!
I'm glad you have looked into Amgen's program. I got it started within a few days while waiting for insurance to ok it. Nplate is the only thing that has worked for me. Keep us posted!
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12 years 10 months ago #33620 by AmyB
Replied by AmyB on topic Booo!
As I suspected, I am to take 20 mg of prednisone through the weekend and get rechecked Monday morning. I have discovered that if I break up my dose into 10mg first thing in the morning and 10mg later in the day, I do not have the elevated blood pressure or the heartrate issues I do when I just take 20mg at once. It is a quick fix to get me out of single digits but never seems to maintain any safe range of platelet count.

Does anyone else have that much of an issue with pulse and blood pressure at only 20mg? Normally my bp is in the 120/60 range and my pulse is a bit high at around 85-ish. But with only 20 mg, I can go to 140/92 and a pulse of 130 within hours of taking it.

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 10 months ago #33621 by dru
Replied by dru on topic Booo!
I have the same problem, my normal is about the same as yours (even with atenolol that I take for fast heart rate, not high blood pressure). On 20mg pred I go up to 140/90 ish and my pulse goes to 120 or so even resting on my couch. I'm on 15mg now and it is not any better.

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  • 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
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12 years 10 months ago - 12 years 10 months ago #33629 by Sandi
Replied by Sandi on topic Booo!
I'm on 40 mg's right now and my pulse and BP are both up. Yesterday my BP was 140/85 which is high for me with my BP meds. I'm also having a lot of palpitations. I can handle 20 mg's though pretty easily.

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12 years 10 months ago #33653 by AmyB
Replied by AmyB on topic Booo!
OK, so not so sure 20 mg of prednisone is working; I have oodles more petachiae now then I did Friday when my p's were 5. I've never had it this bad; on my back, hips, waist, shoulders, calves, thighs and along my bra line on my chest! :blink: I'm sure others have but this is a new symptom for me..to this degree I mean. I also started spotting yesterday and that has increased as well. (Is that TMI? If so, I am sorry.)

Taking this into consideration and trying to keep a positive attitude, I asked my husband what his guess was as to what my count will be tomorrow. He said, "13 or 14." I diagreed and we made a friendly wager. ;) So we shall see.

Hoping to hear about NPlate approval tomorrow or Tuesday. Keep your fingers crossed something transpires on that front soon.
Hope all is well for all of you.

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12 years 10 months ago #33656 by jeffrey71
Replied by jeffrey71 on topic Booo!
Amy,

So sorry to hear about all that is going on! Hang in there and drop us a note Monday morning when you can.

Jeffrey
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  • 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
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12 years 10 months ago #33657 by Sandi
Replied by Sandi on topic Booo!
Good luck, Amy. I hope your husband wins this one! :) Let us know.
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12 years 10 months ago #33666 by Vdeutsch85
Replied by Vdeutsch85 on topic Booo!
Amy B,

I've def been in that boat! Hope you will get Nplate soon! Are you feeling fatigued and achy everywhere? That is the worst.

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12 years 10 months ago #33667 by AmyB
Replied by AmyB on topic Booo!
I am at 8 today.
I am to continue the prednisone at 20 mg and get rechecked Wednesday.

And no, I am not achey or overly tired...thankfully. Maybe a bit more tired than usual but I've been pretty much consistently under 30 for...well since February 11th so I am pretty sure I have felt somewhat "tired" since then anyway! The only thing different is I have more petachiae and am getting new brusing just today. Definitely not as "sharp" as I normally am but not in dire shape or anything.

Still waiting to hear about NPlate...

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12 years 10 months ago #33668 by jeffrey71
Replied by jeffrey71 on topic Booo!
Ok Amy!

You know the drill! Don't worry and keep us posted and know that we are all thinking of you!

Jeffrey

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12 years 10 months ago #33726 by AmyB
Replied by AmyB on topic Booo!
...and back down to 5. No new bleeding except for this wet purpura "blister" on the iside of my cheek and the petachiea seems to be lessening? It isn't getting worse anyway.

I am to continue the prednisone and hopefully we will hear something about NPlate approval tomorrow!

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12 years 10 months ago #33803 by AmyB
Replied by AmyB on topic Booo!
And yesterday I was down to 4, even staying on 20mg prednisone. My Dr. wants me to up it to 40 but that is when the side effects become too much...I am not sure what to do. I don't want to be non-compliant, but I have no bleeding whatsoever and other than feeling a bit tired, I am fine.

NPlate was finally approved but I won't start it until next week.

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  • 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
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12 years 10 months ago #33808 by Sandi
Replied by Sandi on topic Booo!
Amy - 4 and 5 are pretty much the same thing. So are 10 and 5...it's not exact.

I know 40 mg's is hard....why don't you try 30 mg's at least until you get N-Plate? It's only a few days. Do you have a lot of petechiae or bruising?

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12 years 10 months ago #33811 by jeffrey71
Replied by jeffrey71 on topic Booo!
Amy,

In my humble opinion, I think that Sandi has given good counsel. Stay positive! Send me a "vent" note if you wish!

Jeffrey

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12 years 10 months ago #33838 by AmyB
Replied by AmyB on topic Booo!
Well, I went to 30mg as soon as he said 40mg...heh. And I have no more brusing or petachiae than I did at 8, so... I guess we'll wait and see!

What do you think about (and this is just an idea) me waiting until AFTER I see the endocrinologist on the 24th to actually start the NPlate? It was a hypothesis that once the thyroid got sorted, the platelets very well may follow? I of course will talk this over with my Dr. but just wanted your opinions/experiences.

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  • 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
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12 years 10 months ago #33861 by Sandi
Replied by Sandi on topic Booo!
Well Amy, it could take a while to get your thyroid under control, and I don't know if waiting that long with your counts is very wise. If you can at least get them up to 15 or 20, it might be more reasonable to then wait to start N-Plate. You should discuss this with your doctor.

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12 years 10 months ago #33972 by Vdeutsch85
Replied by Vdeutsch85 on topic Booo!
Amy,

I would discuss this with your hematologist and endocrinologist. That way you can have 2 opinions. I have Graves' disease and itp but am I'm remission from graves right now. Both are the pits. I'm sorry you have to deal with platelets and thyroid at once.

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12 years 10 months ago #33974 by AmyB
Replied by AmyB on topic Booo!
Up to 11 on Monday! My first NPlate injection is (finally)scheduled for tomorrow.

As for the Endocrinologist and my concerns with knwoing which treatement "helped" the low platelets, my Hematologist said that if we go ahead and start NPlate and the Endocrinologist IS able to get the thyroid in better shape and that improves the platelets situation then we can just dose down off the NPlate.

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12 years 10 months ago #33975 by jeffrey71
Replied by jeffrey71 on topic Booo!
Good luck Amy!

Jeffrey

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12 years 10 months ago #33977 by Vdeutsch85
Replied by Vdeutsch85 on topic Booo!
I'm glad they are working together! Be patient with Nplate. It takes 7-10 days to kick in and then they will need to adjust doseages.

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12 years 10 months ago #34000 by AmyB
Replied by AmyB on topic Booo!
Yay! The NPlate is "in"! :cheer:

Good thing, too, because they did an in-office CBC and my platelets count was 1. Strange though because I really don't feel all that bad.

Anyway, happy weekends to you all!

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12 years 10 months ago #34006 by jeffrey71
Replied by jeffrey71 on topic Booo!

AmyB wrote: Yay! The NPlate is "in"! :cheer:

Good thing, too, because they did an in-office CBC and my platelets count was 1. Strange though because I really don't feel all that bad.

Anyway, happy weekends to you all!


Keep us posted and best of luck! Have a good weekend!

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12 years 10 months ago #34164 by ashybobashy
Replied by ashybobashy on topic Booo!
I find prednisone is not effective in anyway. i see why they use it but i dont think it helps. Good luck I hope it's worked out for you.

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