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ITP Remission and now flu 2 years 4 weeks ago #68218

  • Angelito0130
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Merry Christmas to everyone,
My daughter is 23 months and she has been on remission for 4 months, on Sunday we went to the ER department because she had high fever and the doctor said that she has FLU type A.
On Friday she has an appointment with her hematologist I am afraid about a relapse.
Can someone had the same experience before?
Please I would like to hear about it.
Thank you

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ITP Remission and now flu 2 years 4 weeks ago #68233

  • MelA
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We are all different.
Curious if your daughter was tested to see if she really does have type A flu.
In the early 2000s I had the "flu" [don't know if it was the real flu or just sick as heck], my platelet count went up to 401k.

Soon you will be taking your daughter to her hematologist for her appointment - please let us know how she is doing!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Remission and now flu 2 years 3 weeks ago #68238

  • Turbo01
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Hello mela,
Is it normal for platelets to go up when sick? My daughters platelet count plummets when she is sick with a common cold or virus. We have been struggling with itp for about a year and a half. Her platelets stay pretty high regularly until her body starts fighting a cold. For the first time a month ago she got a pneumonia and her platelets a week before were up to 600k very strange. We got excited thinking she outgrew itp but a few weeks later we found petechia again. Now I am contemplating giving her the flu shot as we are terrified as to what will happen if she gets the flu.

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ITP Remission and now flu 2 years 3 weeks ago #68239

  • MelA
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Turbo really the only thing normal about ITP is that nothing is normal. Some have counts go up with illness, some have counts go down - some have counts go up with med, some have counts go down. I had my knee replaced last month and had to take baby aspirin 2x a day for 30 days in hope of preventing a blood clot - ITPers aren't supposed to take aspirin - my count went up in the normal range, think it was 197k [did that too in February when my other knee was replaced].

I really hesitate to give advice or anything to someone with a child who has ITP since I'm an adult with ITP. What is right for me probably may not be right for a child. I would talk to your daughter's hematologist about the flu shot and go from there. My experience, and again I'm an adult not a child or teen, is that it has not bothered my count at all and I've had one yearly starting in 1992.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP Remission and now flu 2 years 3 weeks ago #68248

  • Turbo01
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Mela,

You are so right about ITP being unpredictable it’s been quite the ride. We actually have had the discussion with her hematologist she suggested we get it as the effects will be worst with the flu, but I am a bit torn because her previous hematologist was against her getting the shot.

If you don’t mind me asking why were you taking aspirin if your count was at normal range? I would think you would take it if the counts were above range.
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ITP Remission and now flu 2 years 3 weeks ago #68250

  • 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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I have a 'flu vac every year. It has never affected my platelet count.
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ITP Remission and now flu 2 years 3 weeks ago #68251

  • MelA
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Hi Turbo - like I said, I am an adult and I am not telling you what to do regarding your daughter as I know nothing about children and ITP. I do know that the flu is bad this year, I do know it can be devastating to those who get it who do not have ITP. You have to do what you feel is the best thing for your daughter, period! Good luck with your decision!

My count was not in the normal range when I was put on the baby aspirin - in February I had total replacement of my right knee, I was put on baby aspirin 2x a day to hopefully prevent a blood clot, and I was very surprised when my count went into the normal range while on the baby aspirin [back down later]. On November 15 I had total replacement of my left knee and again was put on baby aspirin 2x a day for 30 days to prevent a blood clot and again my count went up into the normal range. I haven't had it checked lately, will go in next month for a count - but I probably will be lower than norm again. Lately my count has been running around 90-100k which I'm happy about.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP Remission and now flu 2 years 2 weeks ago #68273

  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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Mel, two knee replacements in one year! Wow! (I had one in 2002, the other in 2012). I was still reeling from my hip replacement a month after surgery (Aug 30) when you sound quite perky after only a month.

Just wanted to report that with all my replacements--and with any surgery--my platelets have shot up and stayed high (above normal often) for months. I know they have given me a bigger dose of steroids just before the surgery, but my theory is that my body is so busy trying to recover from surgery trauma that it doesn't have time to destroy the platelets. Ironically, the shortest high-platelet period was after the splenectomy that was supposed to put me into remission! I have rarely had the flu, but neither flu nor flu shots have affected my platelets.
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ITP Remission and now flu 2 years 2 weeks ago #68274

  • MelA
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Hey Karen, hi - it is good to see you!

Getting new knees was the best thing I've done - bone on bone pain is really the pits and I could no longer run around the back yard playing ball or ridding the world of aliens with my grandchildren and I could no longer dance [clogging & tap] my decision was for a better quality of life. However I anticipated just the right knee even though both knees were toast - even told my fantastic/wonderful/caring/sensitive [can you tell I like him] surgeon he wouldn't see me again for years - I enjoyed about 2 months with my new right knee before the left knee got a heck of a lot worse and had to make the decision to replace it.

I feel I am doing very well, did have a bout of cellulitis in the leg a few inches above the ankle at the shin which was horrendous pain - did not have any pain med as it made my oxygen go low. I am driving, going up & down the stairs. riding the stationery bike, still doing PT.

Haven't had a platelet count for a while, I will assume it went back down once the aspirin cleared my system as it did with the other knee. But so far I'm staying above 80-90k so can't complain. Interesting your count went up and stayed there for months! How is your count now? Is your hip doing ok now?
Take care,
Melinda
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP Remission and now flu 2 years 2 weeks ago #68278

  • Turbo01
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Hello mela,

Thanks for explaining!

My daughter’s count was 116k so we decided to give her the flu shot hopefully it will protect her from the flu as I heard this years vaccine isn’t too affective.

We thankfully have yet to see any side effects from the vaccine so we are very grateful!
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ITP Remission and now flu 2 years 2 weeks ago #68280

  • MelA
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Turbo, your daughter's count is great - fingers crossed it stays up like that!

It seems each year we hear that the vaccine isn't effective - they do have to figure out which strain/strains could be making the rounds and go from there. I do hear though that the flu is really hitting hard in many states - I'm just glad I got the shot, may not keep me from getting the flu but should keep me from getting it too badly [i'm not a fan of hospitals :) ].

Do keep us posted!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP Remission and now flu 2 years 2 weeks ago #68290

  • poseymint
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Angelito- I hope your child stays in remission- good luck!
Good your child's counts are up, Turbo. It must be worrisome when counts are low and a relief when they go up.
I get the flu vaccine every year and have no problem with it. My platelets seem to stay the same.
I got the pneumonia vaccine-prevnar 13 in 2018 and had no significant side effects, platelet were fine.

This past December I got the shingles vaccine- Shingrix. Its a powerful vaccine that gave me some rheumatic symptoms- (I also have sjogrens, a rheumatic auto-immune disorder) Symptoms were a week of mild nerve and muscle pain, feverish, slightly sore throat and lungs/bronchial. Not fun but I could still go to work, so not bad. I believe I reacted more than a person without auto-immune disorders. But even with all that, my platelet stayed about the same.

My doctors have encouraged me to get vaccines because they say the flu, shingles, pneumonia would be hard on people with rheumatic disorders. I believe that. I had bronchitis a few years back and it caused a flare up of nerve pain (sjogrens). And my platelets shot up to 325. I thought I was in remission too! Sadly not so, but I was able to lower my dose of Nplate, and have stayed at that lower dose for 3 years. Conclusion: my counts go up with viruses, and stay the same with vaccines.

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ITP Remission and now flu 2 years 2 weeks ago #68291

  • MelA
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poseymint it's interesting your doctors told you to get the Shingrix - my immunologist told me not to get it yet as there haven't been studies on it for people with autoimmune disorders [think I have that right - it's been a while since he told me]. I have had shingles 2x already. When do you get the 2nd dose?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Remission and now flu 2 years 2 weeks ago #68302

  • poseymint
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Hi Mel- I get the second dose of Shingrix 6 mos after the first dose, which would be around June.
Since the shingrix has not been available here in California, I have been reading/thinking about it for 2 years. So had lots of time to make my decision.

Both my rheumatologist and family doctor encouraged me to get it. But what convinced me was that I work with a woman who has severe psoriatic arthritis. She had an attack of shingles on her face which caused her to lose vision in one eye. So when the vaccine came out, her doctors were able to get a dose for her. She had minor side effects, body aches and a sore arm. She was like me in that she had a bit more aches and fever than a healthy person but tolerable. (I took some Ibuprofen)

I also know a woman who has Sjogrens which is often debilitating for her, fatigue and pain. I asked her if she had gotten or was getting the Shingrix vaccine. She said she had once had a terrible case of shingles on her face, so because of that she got the vaccine. She did not have significant side effects from it. Its a small sampling but including myself, I now know 3 auto-immune people who did fine on the shingles vaccine.
Here is an article which says only 16% of healthy people had fever, myalgias for 2 days. I had all that and more for longer than 2 days- but still it was not bad as having a cold. I will let you know how the second dose goes.
www.medpagetoday.com/meetingcoverage/oar/74765

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