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TOPIC: ITP Diagnosis 5/23/2019

ITP Diagnosis 5/23/2019 7 months 1 week ago #68486

  • MelA
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I'm one of the "you folks" with a partial remission (I guess - lower counts, no treatment) - I don't work out. But I plan to get back to exercising now that my new knees are in place - have started back dancing (tap and clogging - clogging is a good workout).

Regarding multivtamins ecoclayton - my MD a few years back told me not to take one with E because at that time I was getting spontaneous vein breaks in the back of my fingers. Once I stopped the multi that stopped. So who knows. I do take Vitamin C (Ester C) and some other supplements but not a multi. Hmmmm - I thought ITPers and Melatonin don't mix, maybe I'm thinking of something else.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Diagnosis 5/23/2019 7 months 1 week ago #68491

  • ecoclayton
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Mel,
My doctor suggested I try the melatonin. I also found this.
www.ncbi.nlm.nih.gov/pubmed/12424512
I will let you know how it works out over the next few weeks.

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ITP Diagnosis 5/23/2019 7 months 5 days ago #68514

  • MelA
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Interesting ecoclayton - thanks.
Do let me know how things go!
Good luck!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Diagnosis 5/23/2019 7 months 18 hours ago #68551

  • Hal9000
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ecoclayton wrote: Back from the Dr. with a count of 39. We decided to stay with the watch and wait strategy since I didn't drop anymore.

Exactly, who knows until one gives it time. Perhaps the 39 is the lower limit to a possible long term count range - centered around 50 or so. It's been awhile, but I think Jay's counts range is roughly 40 to 60, and that EmilyK's is similar.

I didn't change a thing since the last appt so I think I might try adding something to see if there is a change at the next appt. A lot of what I tried before was while I was on prednisone and since I am drug free now maybe I will get different results. I had a nice bump when I last tried Melatonin, so I guess that is as good a place to start as any.
Hal,
The multivitamin I am taking has 400 mcg Folic acid. I have been taking it since 6/17/19 and counts have ranged from 73 - 38 with a high of 118. My wife actually suggested stopping all Vitamins to see if that makes a difference, but during flu season I am a little hesitant.

Ok, excellent. I think the idea is to not become 'deficient' while the immune system sorts things out. As I recall, it took Jay's immune system a little over a year to get stable and drop treatment. Then later, after stability, not to become deficient and have an ITP relapse.

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ITP Diagnosis 5/23/2019 6 months 2 weeks ago #68604

  • ecoclayton
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Just back from the Dr with a 30 count. We are going to try Doptelet 20mg daily. I will get tested one more time next week before I take it to make sure I don't have a nice bounce up. I have to wait for Pharmacy company to call to find out when they will be sending it to me anyways. I will be going in weekly to get tested once I start taking it. I really want to avoid any of the meds that weaken my immune system, especially during Flu season and this Corona virus thing.

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ITP Diagnosis 5/23/2019 6 months 1 week ago #68661

  • ecoclayton
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Got another blood count and I was at 32 this week. I have been approved for Doptelet by the insurance company, but am going to wait for my next platelet count, in 2 weeks, before I start. I feel like since I am showing no symptoms that I should stay with the watch and wait program. I also wonder, if I do start treatment, then maybe it will boost me high enough that either I go into remission or at least I don't have to be on edge always wondering if my counts are low. It seems like my counts drop slowly and that if I can get a close to normal count then maybe I will have 6 months or so before it gets low enough to worry again. Who knows, but the roller coaster ride continues!

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ITP Diagnosis 5/23/2019 6 months 17 hours ago #68708

  • Hal9000
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You seem to be doing very well ecoclayton.
I agree. A few months on a TPO receptor agonist might well give you, at least, a good steady partial remission. Actually, I am amazed you've gotten this far without any TPO-RA drug.

Doptelet for you scares me a bit though. They only come in 20mg tablets and are roughly 4 times more potent than Promacta. That would make it equivalent to 80mg of Promacta. That's a lot of Promacta ! That's more than the FDA approved max dose of Promacta of 75mg. If it were me, I'd be sure to have some aspirin on hand. I'd take some at the slightest hint of a headache and not let a little problem get out of hand. LOL, have you thought about learning how to split tablets in half?

Or, do you and your doctor have some sort of alternative plan in mind? Maybe take only 3 or 4 tablets and see what happens?

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ITP Diagnosis 5/23/2019 6 months 1 hour ago #68713

  • MelA
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Hal is it advised to split these tablets in half?
You suggested that to someone for a different med and that med specifically says not to cut or crush...
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Diagnosis 5/23/2019 6 months 58 minutes ago #68715

  • JJ
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It's not advisable to take aspirin either.

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ITP Diagnosis 5/23/2019 5 months 3 weeks ago #68753

  • Hal9000
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Advised by who to split, the manufacturer? Unlikely. GoodRx quotes Doptelet price as about $300 per pill. I wouldn't be surprised if they specifically design the pill to crumble as much as possible when one attempts to split it. These are 'orphan drugs'. That term has meaning. It's all about making as much money per pill as they can.

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ITP Diagnosis 5/23/2019 5 months 3 weeks ago #68758

  • ecoclayton
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Got the Doptelet in the mail yesterday and took my first dose today. Counts were at 35 yesterday. Dr actually said since you seem to be stable above 30 then you can wait to take if I wanted. Thing is, I am tired of worrying about my counts all the time and figured I will start this and see where it takes me. If I can get my counts up I think it will be much less stressful and who knows maybe I can reach remission? I will be sure to let you all know of my progress
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ITP Diagnosis 5/23/2019 5 months 3 weeks ago #68768

  • mrsb04
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Fingers crossed for you ecoclayton
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ITP Diagnosis 5/23/2019 5 months 3 weeks ago #68772

  • MelA
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Hal9000 wrote: Advised by who to split, the manufacturer?


By you hal - you said this in the post above.
"...have you thought about learning how to split tablets in half?"
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Diagnosis 5/23/2019 5 months 1 week ago #68853

  • ecoclayton
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Just back from Dr. and after 2 weeks of 20mg Doptelet daily my counts are up to 70. Dr was happy and so was I. Next appt is in a month, unless I start having issues. I have not noticed any side effects yet and hopefully I never will!! I hope everyone is doing well.

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ITP Diagnosis 5/23/2019 5 months 2 days ago #68924

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LOL, I'm happy it is working for you too (better quality of life), but a bit disappointed in the number. That response reminds me of GrouchoMarx's response on 75mg of Promacta.

Cheers to a rising count over time !

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ITP Diagnosis 5/23/2019 4 months 2 weeks ago #69014

  • ecoclayton
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Update 5/6/20. It's almost been 1 year since my diagnosis, although the first time I had low platelets was in August 2017. Platelets today were at 74 up from 70 a month ago. I am still on 20 mg/day Doptelet with no side effects and I will be staying at the 20mg/day. I hope everyone is doing well.
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ITP Diagnosis 5/23/2019 4 months 2 weeks ago #69015

  • MelA
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Hate to say this, but 74 and 70 are really the same.
Glad you are staying stable! Keep it up!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Diagnosis 5/23/2019 4 months 1 week ago #69024

  • ecoclayton
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MelA,
I know they are the same, but it just feels better when the number is higher than last time :)

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ITP Diagnosis 5/23/2019 4 months 1 week ago #69033

  • MelA
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And you are so right - to us if there is an increase in count no matter what the increase is we feel so much better! ;)
I remember one time my count came back 10k higher and my then hematologist wasn't impressed, told me it was just the same as 10k lower.

Hope that count increases more!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Diagnosis 5/23/2019 3 months 2 weeks ago #69237

  • ecoclayton
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Back from my monthly blood draw. Counts were at 59. Will be staying with same dosage of Doptelet 20 mg and seeing the Dr in another month. Was hoping for something in the 70's, but 59 is basically the same as my last (74). Hope everyone is staying healthy.
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ITP Diagnosis 5/23/2019 3 months 2 weeks ago #69242

  • mrsb04
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Ecoclayton: Nice counts, over 50 for two months.

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ITP Diagnosis 5/23/2019 2 months 1 week ago #69399

  • ecoclayton
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Quick update. This months counts at 63 up from 59 last month. Staying with Doptelet 20 mg daily. Next appt is in 2 months! Hope everyone is doing well!
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ITP Diagnosis 5/23/2019 2 months 1 week ago #69400

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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Nicely stable you must be pleased
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ITP Diagnosis 5/23/2019 2 months 1 week ago #69402

  • MelA
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Isn't it nice to have a stable count?! Congrats!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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