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Intro: Newly Diagnosed 7 months 3 weeks ago #70306

  • sleev-les
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Holding steady. 70k from Monday's CBC. Down to 5mg pred.

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Intro: Newly Diagnosed 7 months 3 weeks ago #70311

  • MelA
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Steady is good!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Intro: Newly Diagnosed 7 months 2 weeks ago #70326

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Steady was good.. This week not so much. 53k from Monday's CBC. Down about 20kish. Staying at 5mg pred until next CBC.

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Intro: Newly Diagnosed 7 months 2 weeks ago #70327

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Don't get disheartened. Anything above 30 is ok

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Intro: Newly Diagnosed 7 months 2 weeks ago #70330

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Just hate seeing it go up for a change then drop. At 50k, takes a bit more to stop any bleeds from insulin injections and my glucose monitor.

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Intro: Newly Diagnosed 7 months 1 week ago #70352

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Back up to 61k this week. Taper continues. 2.5mg of pred starting today. Hopefully ~60k is my stable ground. :)

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Intro: Newly Diagnosed 7 months 1 week ago #70353

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That's good. I hope for you stable counts & above 60k!
My old hematologist would say 61k is the same as 50, or 53k.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Intro: Newly Diagnosed 7 months 1 week ago #70354

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MelA wrote: That's good. I hope for you stable counts & above 60k!
My old hematologist would say 61k is the same as 50, or 53k.


He say's 10% variance is his gauge so ~5k or so up and down. I think he held off since I went up to 70/77 then down to 51 so 20k could be a decent drop. Who knows, could have been fighting a bug or god knows any other reason that could cause a shift. Just glad they are back at my average range.

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Intro: Newly Diagnosed 6 months 3 weeks ago #70412

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I hope everyone had a great New Year.

My journey continues. Had 2 weeks of 61k. Then last week I never heard from my Doc about results. Called on Thursday to get the status (draws are done each Monday and I get results and pred guidance on Tues, Wed morning latest). Got the one front desk person that I'm not fond of. Rudeness in her voice and talks to you like you're a child. I asked for my results and guidance on Pred and she says that if they need to call me they will. I told her they need to call me since im tapering pred and would like to know what my CBC is. She stated she'd leave a message and I never heard back. Of course they were closed Friday. I'm saying something today about it and that this is the second time I was basically talked to by this one person as if I'm bother her by calling.

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Intro: Newly Diagnosed 6 months 3 weeks ago #70413

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I don't know how far the office is from you but here is what I did one time:
Knew, just a feeling, my count had dropped good after a tetanus booster so called PCP & had labs done. When the call came in with the results no one was home - the message on the machine was from a partner in the practice: Your count is low if you aren't feeling better in 2 weeks call us. [not exact words since this was back in 2002].
1. - Low, what do you mean low?
2. - not feeling better?? I NEVER said I felt bad!

So I got in my car, drove to the doctor's office, put my elbows on the counter and said [not asked, said] What is my count!!!

Well it was low, it was crashing - I ended up getting back with my hematologist & having treatment.

Also have you mentioned to the doctor or the office manage how rudely you were treated & have been treated in the past? I'm sorry you were treated that way, there is no excuse for that at all!! Does she know you are helping to pay her salary?!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Intro: Newly Diagnosed 6 months 3 weeks ago #70414

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It could be worth your time to report the woman to the office manager (unless it's she), but not always. My husband and I were once patients at a practice with a real horror show of a receptionist. She once called to relay a message regarding my husband's med. The information was in error, and the directive she gave about dosage could have been disastrous. When I questioned it, she literally screamed at me that she was right and he could change the dose or not, she didn't care. I got hold of the office manager on the phone who told me in a whispered voice (presumably so the harpy wouldn't hear) that she hears my type of complaint "all the time" and that there's nothing she can do. I took this to mean there was some kind of personal relationship between the harpy and the doctor and that nothing was going to change. We left that practice solely because of that one staffer. Reasonable people don't have to put up with that kind of dangerous disrespect.

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Intro: Newly Diagnosed 6 months 3 weeks ago #70415

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The office is fairly close to me. When I went yesterday I made a complaint with one of the office staff. I know which one it is so I knew I wasn't making my complaint to the person that has the issue. On Friday I am also mentioning it to the doc during my virtual follow up. The other 2 ladies at the front say's call and ask for one of us. Both of them are helpful, but I have to get through the brick wall of a person first. I asked to see last weeks results and lo and behold my numbers are down to 37k. Since I was there for weekly bloodwork the doc will decide what to do based on yesterdays CBC. The nicer staff said to make sure and call in the afternoon today.

On top of that this is the week I have to get an eye injection for my diabetic retinopathy. So I need to make sure I'm in a safe range.

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Intro: Newly Diagnosed 5 months 4 weeks ago #70571

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Still holding. My count after the last post was 51k. Then 69k then back to 51k. No treatment. I'm now at bloodwork every 2 weeks. Fingers still crossed. Hope everyone is well.

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Intro: Newly Diagnosed 5 months 4 weeks ago #70572

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That is really good news sleeve-les !
Basically 51k & 69k would be the same, at least my former hematologist would say that.

Sorry about your diabetic retinopathy - good that something can be done though. My stepmom get a shot in her eye for macular degeneration.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Intro: Newly Diagnosed 5 months 3 weeks ago #70573

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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
  • Posts: 1870
  • Karma: 7
  • Thank you received: 535
Good counts sleep-les

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Intro: Newly Diagnosed 5 months 3 weeks ago #70576

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MelA wrote: That is really good news sleeve-les !
Basically 51k & 69k would be the same, at least my former hematologist would say that.

Sorry about your diabetic retinopathy - good that something can be done though. My stepmom get a shot in her eye for macular degeneration.

Your stepmom is most likely on the same or similar medicine. I was on Lucentis which had a 4 week life. I moved over to Eylea in the spring since it holds for 2 months. I also get laser sometimes for a more perminant solution. Just had focal laser on the macula this past Thursday to keep some fluid off the macula. I have macular edima(sp?) in conjunction with the retinopathy.

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Intro: Newly Diagnosed 3 months 3 weeks ago #70979

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Crazy couple months. Last month I went down to 34k. Had a healthy baby boy on March 5. Counts at 27k this week. Lower, but no crazy symptoms. Hema said we can repeat BW to see if they come back up on their own or do a lower dose and taper of steroids. I opted to do another run of prednisone as my allergies have been going crazy and dry nose causing some small bleeding (normal every winter spring for me even before ITP). Since I didn't have horrible side effects I figured I'd give it a run and see what happens. Follow up BW next week to see if it helps. 40mg Pred to start.

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