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infection and count drop? What should one do 10 months 1 week ago #71906

  • Lman
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Hello. I was doing well on Nplate.
suddenly two weeks ago I felt dryness in my mouth, my parents had caught a cold and a couple of days after I experienced these symptoms as well but just took acetaminophen, and worked fine. Counts were in 50-100k and not really bad ( on some 6.5 mcg/kg dose ) but I woke up with a nose bleed and I was very worried. I checked it was 6k. I was frightened and increased nplate by 1mcg/kg and did it 2 days earlier and after 2 days of shot reached 19k but dropped to 8k the next day ( I know it may not really work so fast ). So I stayed in the hospital for 3 days and got Ivig/ Dexa (0.3 gr/ kg ivig + 40 gr dexa each for four days ). Upon I was admitted, they also confirmed that I have some sore throat regardless of low count symptoms in the mouth and even after I was discharged ( after two days some 185k on all the dex/ivig/nplate trio ) even after third day despite counts are good still some of the initial throat redness due to possible infection is still visible ( but I think is fainter ). I'm worried. Do I need to do anything or just stick to the previous nplate dose before all this started, or visit some virologist? I was not given any specific drug for this possible infection and my hema, one day before admitting to the hospital where we met, also did not check it.
I'm afraid about losing response but I know people report transient drops after subtle infections. It would be appreciated if you could help.

P.S: I recall hema prescribed several tests (Urive, kidney and liver) which came normal but another was CRP which was 69. I think theoretically it can mean infection (maybe common cold). Holding my fingers crossed until Tuesday where I will get another count/CRP to see what should I do. I called him and he told me to do so.

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infection and count drop? What should one do 10 months 1 week ago #71907

  • CindyL
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I just recently got over an infection myself (NP said it was an absess) and was on 2 different antibiotics, one being Penicillin.  My counts didn't change, but then, I'm in remission and not on any medication.
When my teeth or gums get infected, I gargle with salt and warm water.
Good luck.
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infection and count drop? What should one do 10 months 1 week ago #71908

  • mrsb04
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My count always drops if I have a cold and takes a while to get back up. I usually do a pred rescue and leave any other medication dose the same. I had Romiplostim 5 years ago  and lost response after year. Then I had 4 years on Eltrombopag before losing response to that. I've been back on Romiplostim for 6 months and I'm fed up with it already no stability at all. Am seeing my haemo on Monday and am going to ask to come off it and go on the PRN1008 trial. 
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infection and count drop? What should one do 10 months 1 week ago #71910

  • Lman
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My count was 777k I think the increase in nplate dose with IVIG and dex did this. This week I injected 2/3 of my previous total dose. Dex usually has a very fast and encouraging response but I think I should be cautious about returning to baseline. Does anyone have any idea how long does IVIG or dex effects last so that once they wean off I am not receiving Nplate less than I should be receiving? I will test for next Thu where I will have to shoot, but I'm worried maybe I should have another test before that? The next Thu will be 11 days post the last IVIG vial I used.


mrsb, are you sure about the trial? 
I think you will find this helpful.
aob.amegroups.com/article/view/6335/html

 Although combinations of two different TPO-RA or a TPO-RA along with fostamatinib can be considered, we find the expense of such combined therapies to be prohibitive

I also took 10mg pred for two days as a rescue before going to the hospital but it did not work. How much and for how many days do you take when you have an infection?
By the way, the monocyte percentage is still slightly high but CRP returned to normal. I now wash my mouth with salt every night before going to bed it's a good practice.

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infection and count drop? What should one do 10 months 1 week ago #71911

  • MelA
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777k !!   That is way to high for my liking - when was this count?

Regarding IVIg - everyone responds differently - I have never had it and hope never to.

Take care!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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infection and count drop? What should one do 10 months 1 week ago #71912

  • Lman
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two days post-discharge. It is really hard honestly. high dose dex has very nasty side effects, insomnia for a week, muscle cramp, hot flashes, frequent urination, mood changes, and so on :( 
I also have midterms and this hospitalization was a shock for me and my long-term plans. I may have a test tomorrow. Last night I could really feel high blood pressure and headache and shortness of breath and was horrified, could not tell whether I'm low or high.
I just hope one day it all ends. 

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infection and count drop? What should one do 10 months 1 week ago #71913

  • mrsb04
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Lman 

A count of 777 would have sent me over the edge with worry about the possibility of clotting. 
I'd read that paper before but good to re-read as a refresher.
My understanding is IVIg response is quite short lived. I'm not sure about Dex though. 
My Pred rescue is  4 days doing 20mg,15mg,10mg,5mg.

I am sure about doing the PRN1008 trial if I get the opportunity.  
I've had ITP since 2014
Azathioprine:- no good unless on a high dose but side effects (profuse diarrhoea) too much to bear. I dare not leave the house !!!!
Mycophenolate:- didn't work and made me depressed +++
Fostamatinib:- didn't work. 
Eltrombopag:- lost response on 75mg/day but by then had iron deficiency due to Eltrombopag chelating my iron stocks. 
Romiplostim:- I do not like the instability of counts nor the bone pains, muscle pains and joint pains which started when I was upped to 325mcg dose. I've dropped back to 250mcg but it hasn't' reduced the pains. Plus I can tell that  my Tuesday dose it is losing effect by the weekend as I bruise so easily then.  

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infection and count drop? What should one do 10 months 1 week ago #71914

  • MelA
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Lman get another platelet count so you know for sure what is going on - you don't want a high # like that!!
Di you increase your nplate on your own or did the doctor?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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infection and count drop? What should one do 10 months 1 week ago #71917

  • Lman
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Hi.
I did another test. It was 845k. I called hema and took 40 mg aspirin.
I will be vigilant watching symptoms. I'll have another test by Thu, the day I have to shoot, and I'll pray that I will have some good news. My previous experience with IVIG effects had weard off by the day 11. My fear is that by that time my previous nplate dose may be too low.


mrsb.
I'm really sad to hear that. I know how frustrating it is. I wish you will soon find the treatment with near-zero side effects and that we soon be able to halt all treatments.

MelA
I increased the dose for less than one unit (according to the protocol) desperately to stay away from hospital. I failed. I wish I had taken more rescue pred. Hema told me to do so but I really hated prednisone and I did not. Now I ruined a week and received much more dex than a couple days of rescue pred :|

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infection and count drop? What should one do 9 months 2 weeks ago #71959

  • Lman
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Ok, Some updates. Still wondering what is happening. Lets recap:

Caught some sort of strange cold or flu (symptoms very minimal, took adult cold pill for a day or two and I though it resolved) but a week later crashed and platelets were 6-8k.

Hospitalized for 3 days, 30gr IVIG four times along with 40mg dex four times (upon admittance and each of the following days) plus some 10 units platelets. I had a quick reaction to the first bag so they brought another platelet bag and added some anihisamins.

Before being admitted to the hospital switched Nplate to one level higher to avoid hospitalization. Failed.

On discharge (by discharge, I mean the very last vial of drugs used): some 250 k.
2 days after: 777k.
4 days after: 845k. This time I only used one vial nplate ( normally used 1.5 vial)
11 days after: 480k. Normal 1.5 vial injected that day.
18 days after: 358k. Normal 1.5 vial injected that day.
25 days after: 619k which was yesterday. instead of normal 585 mcg I reduced some 25 mcg due to the fact that after I had some dietary change and lost 5-6kg in three weeks. Some 3kg of it happened in the hospital since I did not eat much so basically the mcg/kg is same as before.

So I was wondering is it still the IVIG or dex effect or the extra nplate dosage a month ago, or its something else?
The last time I received IVIG was some 2 years ago. I received 50gr for GI bleeding, the effects vanished by the 10th day. Also the last time I receive dex was some 3 years ago, after my diagnosis and once again after another GI bleeding. Effects did not last more than a week or two. 

WBC was 9k yesterday with some 63% neutrophils which were slightly high. The 358k also had 11k WBC slightly high.

Given that I am on some high-dose nplate, could I be optimistic that I can at least reduce its dose?

Thanks.

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infection and count drop? What should one do 9 months 2 weeks ago #71962

  • mrsb04
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ITP as frustrating as ever Lman!!  Me too see my new post  #71961
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infection and count drop? What should one do 9 months 2 weeks ago #71966

  • JJ
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You shouldn't be injecting Nplate at all with counts that high but I suspect you already know that. You are playing a dangerous game.
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infection and count drop? What should one do 9 months 2 weeks ago #71973

  • Juliandrea85
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I was thinking the same. But I had very bad drop in counts when i skip nplate. From >300 one week, my doctor decides to skip nplate and the next week counts went to 7!
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infection and count drop? What should one do 9 months 1 week ago #71980

  • JJ
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I'd rather have a count of 7 than 700. With Nplate over about 250 the risk of clotting and consequent stroke is higher than I would be happy with.
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infection and count drop? What should one do 9 months 1 week ago #71985

  • Juliandrea85
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Yes. I think Lman must reject nplate above 250.
Lman, did you ask your doctor about that ?
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infection and count drop? What should one do 9 months 1 week ago #72000

  • Lman
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I took another test and was 580. Visited doctor he believes it could be the IVIG effect. He was happy because he believed say this response shows you will respond to splenectomy :/
Anyway we came to an agreement that tomorrow I should inject 375 mcg (one vial) and test the next week again. Thanks for your responses friends.

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infection and count drop? What should one do 9 months 1 week ago #72003

  • mrsb04
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Lman
 "this response shows you will respond to splenectomy"   I would  ask him  for his evidence base to support that statement. 
I've just done a quick literature search:- ITP does a response to IVIg indicate a splenectomy will be successful.  
Cannot find anything less than almost 20 years old so not exactly current.
Nor can I find a definitive answer  but I think more articles saying IVIg response  is not predictive.
I have absolutely no intention of parting company with my spleen. It is a perfectly healthy organ doing its job properly. I think the risks outweigh the possible, but by no means certain, benefit. 
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infection and count drop? What should one do 9 months 1 week ago #72004

  • Lman
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Hi mrsb04
Yeah, I exactly know that, but anyway I never obey him :), but he is a nice doctor and making decision is my task.
As far as I have good options I do not think about that.
Thanks.
I just hope that this is not related to IVIG and something good has really happened.
Only time will tell.
Pray for me 

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infection and count drop? What should one do 8 months 4 weeks ago #72041

  • Lman
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Hi.
Happy new year.
I continued my weekly testing. Tbh, fearing that the results are transitory and caused by IVIG (and despite deciding to switch to one vial) I dropped 50mcg and overall I have reduced 1mcg/kg compared to pre-hospitalization.

On day 39 it was 254k (So yeah 50mcg reduction almost halved the counts)
And 45 days it was 211k today. (I'm on dose 6mcg/kg now)

Do you folks that have experience with tapering nplate have an idea? Should I go for another 50mcg reduction or play safe and wait even more so that if it Is still IVIG working (after 45 days of injection of the last vial) I will not drop too much? Tbh, I have also started a new diet so maybe it is working. Will let you know once I was sure.

I remember JJ used to taper nplate when he was above 100k. Since I have had a GI bleeding while doing well (+110k) on nplate for a year, but suddenly crashed to 10k and had to dose up significantly. I am really fearful of doing so. And, I confess some part of my mind is conditioned to think dose reduction is too good to be true :|

I should mention that I will have final exams for the next two weeks, so it is another reason I am thinking to play safe.
I have to shoot tomorrow, I can keep the same dose or do some modest (30mcg) reduction and see how it works.

Thanks.

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infection and count drop? What should one do 8 months 4 weeks ago #72043

  • poseymint
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Just my opinion, I would stay on the same dose and allow your body/immune system to stabilize. I find to avoid the ITP roller coaster, slow and steady with one drug at a time is the best way. Good luck with your final exams!
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infection and count drop? What should one do 7 months 1 week ago #72181

  • Lman
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 Thanks  poseymint ! I did quite great with finals, and also followed your advise and never tapered unless I had an increase in my count.

A Quick update:
I tried to taper only when I was stable. So did reach 465 mcg.
And guess what! All of my family including I, got OMICRON! Very frustrating that another infection came around. Well this time I did 25mg pred for two weeks and that week I did nplate's full dose (don't blame on me please). I could say the second-day counts were low cuz I had some symptoms.

Anyway, thanks God, I think I pulled it off after a couple of weeks. I reduced dosage to 450mcg to see where it goes!
The best thing would be that I am able to reach below 375 mcg and then Will do one vial!

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infection and count drop? What should one do 6 months 4 weeks ago #72205

  • Toby-Wan-Kenoby
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My hematologist told me the danger is not high platelet counts it is rapidly rising platelet counts. 
Diagnosed 7/2019 let the fun begin...
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