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7,000 platelets - (At what platelet number should I get platelets or IVIG?)
- Cindy1
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- I got undetectable parasites that caused ITP on a 4/2017 trip that included horseback riding. For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife U
I am curious if people think it is safe to have a 7,000 platelet count or even a 4,000 count? If no active bleeding?
I am at 7,000 platelets today, down from 14,000 yesterday and 27,000 this past Monday, and prior to that I held steady for 2 weeks at 50,000. However, platelets have continued to decreased from last hospitalization 6 weeks ago where I started out admitted with 7,000 and discharged at 1.4 million.
I am new to ITP and last two times I was at 10,000 platelets or below the doctor put me in the hospital and gave me platelets, IVIG and dexamethasone. Now I have a new doctor who says if you are not actively bleeding don't transfuse. I am not against that but am concerned about being so low.
He gave me an Nplate shot yesterday at 14,000. Today at 7,000 he said I can take 20 mg of dexamethasone pill to add to the treatment. If I am still below 10,000 on Saturday he ordered IVIG infusion.
He asked me to decide if I wanted to plan weekly Nplate vs Promacta daily pill. Any thoughts on that decision? I am thinking of going with Promacta.
Sigh...this ITP is so confusing because there is no clear treatment guideline. And then I worry because I am afraid of bleeding out at 7,000 or less. I may be 3,000 tomorrow.
Any thoughts or ideas are appreciated
Thanks!
Cindy
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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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I can't remember, have you used Dex before? I would think that between the N-Plate and the Dex, you'd get to a safe number pretty fast.
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- Rob16
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- Cindy1
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- I got undetectable parasites that caused ITP on a 4/2017 trip that included horseback riding. For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife U
- Posts: 295
- Thank you received: 30
The truth is, I am a little scared of a brain bleed so I am taking it real slow and not taking walks etc. Soon enough the platelets will be up again. Has anyone we know had a brain bleed and at what number?
In fact, do you think I'm crazy that I say I might fly from the USA to Ireland on Wednesday? That is if the platelets cooperate and I have a little luck of the Irish. That is reasonable right? My husband thinks that is a ridiculous thing to do even if my platelets are 50,000.
Thanks!
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- Cindy1
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- I got undetectable parasites that caused ITP on a 4/2017 trip that included horseback riding. For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife U
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Thanks for your response! I guess we are doing OK here. I had Dex in hospital and prednisone at home.
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- Cindy1
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- I got undetectable parasites that caused ITP on a 4/2017 trip that included horseback riding. For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife U
- Posts: 295
- Thank you received: 30
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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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I know a guy who used to be here who survived three brain bleeds under 10k. He had chronically low counts though and nothing worked for him. Nothing. He'd had ITP since he was a child and was in his 40's when he was here. In fact, he's the guy who wrote the long letter to newbies in the Newly Diagnosed Section. Other than him, I don't remember anyone else who had a brain bleed.
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- jayinchicago
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I was at 15 and they gave me an nplate.
After a week I was at 285k, since you have a good response let nplate it do its thing.
If you keep taking nplate I think you get into remission fast, since you have had very good response.
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- Cindy1
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- I got undetectable parasites that caused ITP on a 4/2017 trip that included horseback riding. For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife U
- Posts: 295
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Do you remember how many days it took to kick in and did you then stay up with no medications or did you do weekly shots?
Did you get IVIG Too? He said to get it tomorrow if platelets are still under 10,000.
Community is so helpful, thanks.
Cindy
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- mrsb04
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- Cindy1
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- I got undetectable parasites that caused ITP on a 4/2017 trip that included horseback riding. For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife U
- Posts: 295
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I wonder if my dr will say I don't need IVIG. Hold and see if the dex and nplate will get the platelets up.
Thoughts?
Thanks,
Cindy
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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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However, I'd hold off on the IVIG if it were me because you might end up with skyrocketed counts again. That's like blowing up a whole city just to demolish one building. You really don't want counts to shoot up fast and high; slow and steady is better. By tomorrow, you might not even have to consider it.
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- Cindy1
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- I got undetectable parasites that caused ITP on a 4/2017 trip that included horseback riding. For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife U
- Posts: 295
- Thank you received: 30
Thanks!
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- Cindy1
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- I got undetectable parasites that caused ITP on a 4/2017 trip that included horseback riding. For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife U
- Posts: 295
- Thank you received: 30
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- Cindy1
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- I got undetectable parasites that caused ITP on a 4/2017 trip that included horseback riding. For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife U
- Posts: 295
- Thank you received: 30
Thanks
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- poseymint
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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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- Hal9000
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- Give me all your platelets and nobody gets hurt
I can only think that your sensitive IVIG response (like mine) and your sensitive NPlate/Promacta response (like mine) is what sent your counts through the roof. LOL, now I know for sure never to try that. If this is any help, I was up to 75 after 4.5 days when I first started Promacta. If your NPlate dose was a '1' that might get you a little lower number. Would 4 days be Sunday for you?
What I wanted to chime in about was this. If you go on a trip, how do you get another NPlate shot 7 days after the first?
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- Cindy1
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- I got undetectable parasites that caused ITP on a 4/2017 trip that included horseback riding. For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife U
- Posts: 295
- Thank you received: 30
The good news is that my platelets were up to 27,000 yesterday so I did not need the IVIG. I did not want it. I did have a Nplate shot last Wed and just completed my 5th day of Dex 100mg. I get platelet lab draw tomorrow and am scheduled to see the doctor. The big question will be Nplate vs Promacta for a while. Any preference?
And do I even need it if I am at 27,000?
Once again thanks for the input!!!!!!
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- Cindy1
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- I got undetectable parasites that caused ITP on a 4/2017 trip that included horseback riding. For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife U
- Posts: 295
- Thank you received: 30
I am now thinking not smart to go on this trip. Kids will get a father daughter trip imstead of a family trip. My platelets are too unpredictable. I guess unless tomorrow I am at 500,000. (wishful thinking) Then I could get another nplate shot on my way to the airport on Wednesday. But the truth is I'm making friends with taking it easy and respecting my body. Cop out? I hope not.
What is really weird is that 5/9/17 when I was 1st dx and in hosp with IVIG, platelets, DEX I got only a 2 week safe count until I bottomed out at 7,000 again.
My 2nd hosp had the exact same IVIG, platelets, dex but lasted good for 6 weeks till I hit bottom at 7,000. The only difference was all the antibiotics I got for the possible hpylori. And the platelet count went twice as high as the first time to 1.2 million. By the way, I should get my follow up breath test back this week.
This ITP is just hard to get my arms around.
Thanks always for your assistance in this wild and wacky world I seem to have entered.
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- Cindy1
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- I got undetectable parasites that caused ITP on a 4/2017 trip that included horseback riding. For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife U
- Posts: 295
- Thank you received: 30
Thanks!
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- mrsb04
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- Hal9000
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- Give me all your platelets and nobody gets hurt
I dunno. You could easily have nothing but good counts going forward once you get regular NPlate / Promacta.
Cheers to whichever one works best...
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- D.Mann
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- Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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- 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.
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The dietary restrictions with Promacta aren't horrendous they just take a bit of getting used to i.e. the timing of taking the dose. I now I take my pills around midnight so really only have a problem when on a night shift.
I eat before I go to work, start my fast at approx 10 pm, take my dose at around midnight and go for an hour's rest break at 1am. By the time I'm back from that the restrictions are over so long as I have low calcium food. Come 4 am I can eat what I like.
I only take a spot of milk in tea and it doesn't seem to affect my counts.
www.us.promacta.com/chronic-immune/about-treatment/how-to-take/
Anne
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- Cindy1
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- I got undetectable parasites that caused ITP on a 4/2017 trip that included horseback riding. For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife U
- Posts: 295
- Thank you received: 30
Guess what? My platelets were up over 150,000 today and I am taking a trip to Ireland this Wednesday. (as long as platelets are good Wed morning.) The dr thinks I will be safe. His plan is if I am over 250,000 wed morn I just get a dex burst. If I am under 250,000 I get a nplate shot and a dex burst. It is just a short trip Wed through Monday so it should be safe. Roller coaster ride!
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- Hal9000
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- Give me all your platelets and nobody gets hurt
www.youtube.com/watch?v=J2HBdRCroks
Jayinchicago reported 285 after one week of NPlate. That stuff is strong.
I see your doc still has 'dex' on the brain. I suppose it seems like platelet insurance but for some ITP'ers, it's about as effective as drinking water.
Have a good vacation...
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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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- Rob16
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Best to take precautions while flying, etc. Safe travels, and have a great time!
Some tips to reduce the risk of DVT, from patient.info:
Exercise your calf and foot muscles regularly:
Every half hour or so, bend and straighten your legs, feet and toes when you are seated.
Press the balls of your feet down hard against the floor or foot rest every so often. This helps to increase the blood flow in your legs.
Take a walk up and down the aisle every hour or so, when the seatbelt signs are not switched on.
Make sure you have as much space as possible in front of you for your legs to move. So avoid having bags under the seat in front of you and recline your seat where possible.
Take all opportunities to get up to stretch your legs, when there are stops in your journey.
Drink normal amounts of fluid to avoid a lack of fluid in the body (dehydration).
Do not drink too much alcohol. (Alcohol can cause dehydration and immobility.)
Do not take sleeping tablets, which cause immobility.
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