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lowest count with no treatment

  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 3 months ago #37051 by amberyard
lowest count with no treatment was created by amberyard
What is the lowest count you have had or at what point do you treat? Sitting at 4k no bleeding and feel good. I have read where people would do dex or Pred for a couple of days when they know the counts are low.

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12 years 3 months ago #37052 by eklein
Replied by eklein on topic lowest count with no treatment
My lowest was 8. I feel horrible at lower counts so I treated below 40. If I felt good I would have waited, I didn't have any serious symptoms of bleeding.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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  • weirdjack
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12 years 3 months ago - 12 years 3 months ago #37053 by weirdjack
Replied by weirdjack on topic lowest count with no treatment
"What is the lowest count you have had?"
....... 1k was the lowest in the past 11 years according to my records. I've seen 4k fairly often though.

"At what point do you treat?"
....... Well, since I instantly crash to 1k-4k without treatment, I try to always do something.
I have gone for several months without treating though (last year notably).....at around 4k.

If your question is really about living with sub-20k counts; a lot of us do that daily. I'm currently 11k-19k with treatment.
If I could maintain a count above 10k without treatment, I would not bother treating. That is just me though.

Everyone is different and one size does not fit all. However, many of us are living just fine with what are considered quite low counts. The trick was working with my hematologist to learn how I reacted to certain levels and finding what was safe.


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12 years 3 months ago #37055 by luca
Replied by luca on topic lowest count with no treatment
My lowest has been 13K, at which point I get spontaneous bruising. Are you all getting down to 4-10K without any bruising at all??!! That would be great if that's true, and I would agree not to treat. For me, the presence of bruising is a possible indicator of internal bleeding, and that's too scary for me to risk non-treatment.

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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 3 months ago - 12 years 3 months ago #37057 by Sandi
Replied by Sandi on topic lowest count with no treatment
My lowest was 3k. I used to treat at 15k. I've only ever had bruises and petechiae, no nose bleeds or other bleeding, so I didn't worry so much at lower counts although I did feel tired, weak and dizzy below 20k.

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12 years 3 months ago #37061 by weirdjack
Replied by weirdjack on topic lowest count with no treatment
Luca, I felt a similar anxiety at six months into this adventure.....after 11 years, not so much.
Like the song says, "You live, you learn". Everyone is different, but for most of us it gets less scary with time.
Sure I bruise, humans whack into stuff constantly. With ITP, that just shows up more. Do I wear a foam helmet around? No.

Something to keep in mind: The few platelets many of us DO have are brand new, super-sticky, and generally larger. As long as they function as they are supposed to, life continues. I personally believe I am far more likely to be hit by lightning or win the PowerBall, than to bleed-out from ITP. But each of us has to find out what our own thresholds are and what works for us. )

It all adds spice to life's adventure. Ain't it grand? ;)


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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 3 months ago #37064 by amberyard
Replied by amberyard on topic lowest count with no treatment
weirdjack

that does help me a lot!! I feel good but don't know if it is the pred or not, tamper on 60mg now. Going to see doctor tomorrow to talk about what is next. I do see when I drop 0-4k I wake up with blood blisters in my mouth sometime the wonderful little red spots. But lately it is just the numbers no bleeding or anything else. I know I should check the counts but this daily thing going to the infusion center for cbc and platelets has to give..... Right now I have an open 90 day can come into the infusion center to get cbc and platelets if under 10k... I don't see why I can't just have the weekend off or come in every 3 days or so???

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 3 months ago #37066 by amberyard
Replied by amberyard on topic lowest count with no treatment
Count today was 2k and I feel good, off work today and wanted to come home and take a nap. But of course that didn't happen so I have things to do and get things done while I am off work. Got the things done now at home about to make cookies and watching movies with the dogs and chilling.

But yes if I am bleeding and or have blood blister in my mouth that is when I know I am down and something has to be done, either I can medicate myself with pred or go to the infusion center? I just don't know, where I feel comfortable at yet (i guess that is why i am asking all this questions). how does one know where they are comfortable at? bleeding bad (check) blood blister (check) bruising I can deal with just as long as I know where they come from, right now i have bruises from iv and cbcs

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12 years 3 months ago #37067 by Ann
Replied by Ann on topic lowest count with no treatment
My lowest was 1. I would treat at under about 10 or a bit lower if the mouth blisters hadn't appeared. They always appear under 5 so then I definitely treat. I've never done more often than weekly blood tests though, that would be intolerable.
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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 3 months ago #37069 by Sandi
Replied by Sandi on topic lowest count with no treatment
Amber - I'm grasping at straws here, but I'm wondering if Post Transfusion Purpura is a possibility. If so, having the platelet transfusions could be keeping you in this single digit count cycle. Just a thought.

www.ncbi.nlm.nih.gov/pubmed/17125110

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12 years 3 months ago #37075 by Slammed
Replied by Slammed on topic lowest count with no treatment
My lowest is 3k...I have hit this a couple of times in the past 4 years. My dr force me to treat for anything under 10k. I usually have brusing and petechiae for anything under 30k. In the 40k's, I will have swollen gums. I rarely get nose bleeds, just a couple of times...but it seems like as each year passes, I'm not getting that anymore when counts are low. I like to believe that my body is adopting to living with low counts.

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 3 months ago #37077 by amberyard
Replied by amberyard on topic lowest count with no treatment
Sandi

Thank you look and link now.

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12 years 3 months ago #37085 by CindyL
Replied by CindyL on topic lowest count with no treatment
My lowest was 3 and if I remember right, didn't feel any different. I never had any serious bleeding, just bruises and petechia. Before I went into remission, I would treat under 10, which I didn't hit too often.
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12 years 3 months ago #37086 by Winnifred
Replied by Winnifred on topic lowest count with no treatment
My lowest count without treatment is zero.

Years ago I wouldn't treat till I hit single digits usually 5.

Last time I treated I was around 10 I work full time now so I treated earlier because I felt I could keep up.
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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 3 months ago #37091 by amberyard
Replied by amberyard on topic lowest count with no treatment
If I can just get into the teens I would be happy and not treat. Everyone around me seems to have a cough and sneezing. I wear a mask at work but now my hubby is doing the same thing, will let the doctor know today.

Got a list of question/test and medications if the treatments done kick in inn a couple of weeks.

Test, Parvo, Lupus, another CT, PTP and medications Cyclosporin, Cellcept, Cyclophosphanide, and Azathioprine...

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12 years 3 months ago #37116 by openhanded
Replied by openhanded on topic lowest count with no treatment

amberyard wrote: What is the lowest count you have had or at what point do you treat?


My lowest count was 2k.

My hematologist and I agreed that we would treat at 20k, but I'm sure it's different for me because I was only diagnosed in August.
Diagnosed: August 2013, lowest count 2k.
Treatments: IVIG, Prednisone, transfusions.
Current Count: 233k, 12/23/2013.
Currently: Watching/waiting.

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 3 months ago #37117 by amberyard
Replied by amberyard on topic lowest count with no treatment
15k today got last of vincristine today and starting to taper Pred.

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 3 months ago #37350 by amberyard
Replied by amberyard on topic lowest count with no treatment
so this week lowest was today at 3k and the highest was 9k. I see the doctor on Thursday can't wait to see what he has to say about it. Really want to get cbc once weekly but I'm sure he won't like that. If I can just say about 10k that would be great. I've been juicing twice daily morning and night, hope it helps. I have 2 more weeks on Promacta so see if it works. My numbers when I was on N-plate was between 20k-35k, so I am thinking if nothing works trying N-plate again. I stop it because of the horrible headaches and at this point I will take the headaches over going to the infusion center every day. It is taking a toll on me and my paychecks for sure since I go there before coming to work. I'm just over ITP!!!

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12 years 3 months ago #37359 by eklein
Replied by eklein on topic lowest count with no treatment
Why in the world would he need a daily count? With counts that low, what would be different if you have 4k or 6k, with margin of error it's pretty much the same thing. What would he do differently if you waited a few days for another count? Maybe ask to wait 3 days instead of a week.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 3 months ago #37367 by amberyard
Replied by amberyard on topic lowest count with no treatment
Eklein

Very good idea, it will be hard for me to get counts this weekend due to a festivities going on right by my apartment. I can get there it is just getting home that will be the problem. So I'll get counts today (here now) then at doctors office on Thursday the wait until Monday (unless symptoms come up).

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 3 months ago #37368 by amberyard
Replied by amberyard on topic lowest count with no treatment
4k today

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 3 months ago #37482 by amberyard
Replied by amberyard on topic lowest count with no treatment
31k today

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12 years 1 month ago #38831 by yogesh
Replied by yogesh on topic lowest count with no treatment
Last Tuesday count was 6k. Its been two months (With promacta, rituxian and prednisolone) we have't seen the count of more than 10k, except last week when she had had platelet transfusion Post a bleeding episode. It was 46k but within a week it came down to 6k. She also touched the lowest of 3k in last month.

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 1 month ago #38892 by amberyard
Replied by amberyard on topic lowest count with no treatment
Last week 21k re count tomorrow.

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12 years 3 weeks ago #39065 by DeeDee Marie
Replied by DeeDee Marie on topic lowest count with no treatment
I've been at 12K some years ago and felt fine. I had no bleeding or symptoms. It's mainly how you feel and if you have symptoms.

Dee Dee

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