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TOPIC: 7,000 platelets - (At what platelet number should I get platelets or IVIG?)

7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59753

  • Cindy1
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Hi,

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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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59754

  • 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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Cindy - everyone has to do what they are comfortable with. I can't tell you to go to the hospital or not go. Personally, I went by symptoms. At 7k yes, I would start treatment but I was working with counts of 3k, not in the hospital. That was the way my doctor handled it and I was okay with that knowing that Prednisone would bump me up fairly quickly. There was nothing they could do for me in the hospital that steroids wouldn't do at home. That was my situation though.

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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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59758

  • Rob16
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Cindy, I like your new doctor. Too many doctors overreact when they see low platelets.

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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59760

  • Cindy1
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Thanks for your reply; it decreases some fear. My first dr was on one end of the continuum he would throw everything at once at you at 10,000 or below. This doctor did say if my platelets are under 10,000 on Sat that he would have me get IVIG infusion at the outpt center.

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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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59761

  • Cindy1
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Hi Sandi,
Thanks for your response! I guess we are doing OK here. I had Dex in hospital and prednisone at home.

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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59762

  • Cindy1
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Also, this doctor did say if my platelets are under 10,000 on Sat that he would have me get IVIG infusion at the outpt center.

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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59763

  • Sandi
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You'll probably respond to the Dex faster than you would to IVIG at this point. If you respond to Dex, your counts could be up by now. You'll find out tomorrow, I guess.

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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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59771

  • jayinchicago
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I was in the same situation as you were.

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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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59773

  • Cindy1
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Thanks!!!! That is very helpful.
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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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59777

  • mrsb04
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My haemo wouldn't offer IVIG on a count of 10k unless I was actively bleeding.
The following user(s) said Thank You: Cindy1

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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59779

  • Margaret k
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My consultants say no flying with count below 20 in case of nose bleeds or worse.
The following user(s) said Thank You: Cindy1

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At what platelet number should I get IVIG? 1 year 9 months ago #59782

  • Cindy1
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Yay, my platelets are up to 10,000 from 7,000 yesterday. Funny to be happy with 10,000 platelet number.
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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At what platelet number should I get IVIG? 1 year 9 months ago #59784

  • Sandi
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Again, I can't tell you what to do.

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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At what platelet number should I get IVIG? 1 year 9 months ago #59788

  • Cindy1
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I agree but he wants me to get it 10,000 or less. Hopefully I'll be at at least 11,000 tomorrow!!!!!
Thanks!

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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59789

  • Cindy1
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Thanks!

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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59790

  • Cindy1
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Good to know!
Thanks

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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59792

  • poseymint
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I am fairly easy going about low platelets- I've worked and driven all over with platelet counts of 1K 2K 3K. But I wouldn't fly with low platelets and I wouldn't leave the country with low platelets or without a reliable drug and proven treatment plan. Like MrsB, I wouldn't fly with platelets under 20, probably 40-50K would be better. Just my opinion and experience, not sure what the statistics on flying with low platelets are. Interesting topic, we had a thread about flying a couple years ago. Sounds fun though. What does your doctor say? good luck and keep us posted!

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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59794

  • Sandi
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I would only consider it if I were stable with a treatment or knew what to expect from a treatment. Example: If I were at 3k today and wanted to fly to Ireland in 5 days, I know that if I started taking Prednisone today and continued throughout the trip, I'd be just fine. Everyone does not have that peace of mind with a treatment and if you don't, you might want to reconsider the trip.

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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59798

  • Hal9000
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Cindy, very sorry to see your relapse. The 50s were really looking good! Have to wonder if it was left over IVIG response after the NPlate wore off. From your first post it didn't look like you responded to steroids at all. Somehow your poor steroid response didn't get relayed to your new doc and now you've got to deal with a Dex pulse. Blah.

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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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59817

  • Cindy1
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Thanks for your thoughts. I think I am better off not flying to Ireland from Colorado quite yet because this is just my 2nd month into and third round of ITP rollercoaster ride. I have no reliability on what to predict the platelets will be :( And I don't plan on getting labs in Ireland and being stuck there.
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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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59818

  • Cindy1
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I know right! I was happy at 50,000. Oh well...
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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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59819

  • Cindy1
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That is great that you have a tool that you know is effective to control your numbers! Hopefully, I will go into remission but if not I'll take a tool!
Thanks!

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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59822

  • mrsb04
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Having done N plate and now on Promacta I'd choose the tablets every time. Counts are more stable and easier to manipulate with a daily dose.

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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59823

  • Hal9000
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Cindy, Promacta's weak link is the dietary restrictions. Many don't eat 4 hours before and after taking the pill. NPlate's weak link is going in for count test and injection once a week. LOL, harder to schedule a trip to Ireland with that limitation. As for side effects everyone reacts differently. I think headaches are common with either.

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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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59825

  • D.Mann
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My Hemo pushes IVIG if counts are 10K or below. I got platelets the first time I was in the hospital but not since. I have had IVIG twice since that first hospitalization to boost low counts. I have had bleeding issues both times I crashed, I knew it was low and called the Hemo to get a count done.

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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 9 months ago #59829

  • mrsb04
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Cindy
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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And leaving for Ireland... 1 year 9 months ago #59832

  • Cindy1
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Thanks! I was clueless that there is a dietary restriction. So much to learn!
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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And leaving for Ireland... 1 year 8 months ago #59852

  • Hal9000
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Did you say 150? Oh...
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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And leaving for Ireland... 1 year 8 months ago #59853

  • Sandi
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Yikes! Do you really think you need more meds with that count for a five day trip?

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7,000 platelets - (At what platelet number should I get platelets or IVIG?) 1 year 8 months ago #59856

  • Rob16
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Cindy1, Has anyone mentioned to you the danger of deep vein thrombosis with ITP, especially with high counts brought on by Nplate?
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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