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16 Mar 2023 03:04
  • mrsb04
  • mrsb04
I'm certain most of us are checking ourselves for petechiae and purpura daily.

I most certainly am not. ITP is not ruling my life to that extent.  I have better things to do than look for symptoms. 
15 Mar 2023 16:59
  • th8899
  • th8899
We visited Children's Hospital today for a follow-up. Unfortunately, same as last time, 60mg prednisone did nothing at all. His count is still at 4k. But he has mild symptoms this time, just some petechiae on his legs and shoulder. So we agreed to go back on Promacta again. Also, our hemo said since he relapsed, he will dig a little deeper to rule out any other cause of ITPs. He drew 9 vials of blood and ran a full autoimmune panel to check for everything. So far, C3, C4, DAT, and LDH results are coming back which are all normal. I am sure there are dozens more results that will come back in the next couple of days. Hopefully, everything is good, and he is still just ITP.
15 Mar 2023 16:10
  • dmurashi09
  • dmurashi09
I relapsed after 11 years of normal counts.  Long story short, woke up to see blood spots in my mouth. Went to the ER and found out my platelets were at 2K.  IVIG and dexamethasone infusions for a week brought my counts up to 230K but they dropped back down to 20K only 10 days later.  Went back on steroids for about 7 weeks but told my doc that I wasn't going to take them any longer than that so I tapered off. I then started Promacta at 25mg daily and my counts have steadily risen...quite dramatically. Last count was 390K.  I should note that I am taking 1600mg of papaya leaf extract daily (split into two doses of 800mg), also, and avoiding processed foods and sugar.  Now I'm worried my counts will become too high, which I never thought would happen. I'll talk to my doctor about this and see if it makes sense to reduce the Promacta dose to every other day.   I'd be happy with a stable, medication-free count of 50K. But nothing is for certain with ITP.  I'm certain most of us are checking ourselves for petechiae and purpura daily.  Hoping your son's relapse is only temporary.
15 Mar 2023 09:19
  • CindyL
  • CindyL
Counts are good but it sucks that you can't tolerate the dosage.  Hopefully when your dose gets reduced, that part will get better and still maintain the count.
15 Mar 2023 04:43
  • mrsb04
  • mrsb04
Update
Last Friday my count was 48.
Current meds; Fostamatinib 150mg twice a day, Prednisolone 4mg daily and Avatrombopag 20mg weekly.
I am not tolerating the increased dose of Fostamatinib as well as the 100mg one, and am having to take Metoclopramide regularly to combat the nausea. 
I see my consultant again in 2 weeks. Spoke to her on the phone earlier this week,  she has increased Avatrombopag  to twice a week and is planning to reduce Fostamatinib back to 100mg when I next  see her. 
14 Mar 2023 18:12
  • th8899
  • th8899
Yes, he had a cold less than two weeks ago. However he was sick several times during last 4 years and even got COVID last September. None of those drop his count. I think it must be some specific virus set him off. Back 2018, he was on Promacta for about 11 months, from 50mg to 75mg to 25mg then 25mg every other day. Then we just stopped it and his count maintained above 100k+ for almost 4 years. He also formed habit to check for petechaie often, just few days ago he was all good. We will go back to children’s hospital tomorrow to see if prednisone works or not. Fingercross this is just a temporary drop due to virus.
14 Mar 2023 17:21
  • dmurashi09
  • dmurashi09
I'm sorry your son relapsed.  Has he been sick recently? Received any vaccinations?  These may cause platelet counts to drop.
How long did your son take Promacta and at what dosage?  I assume he stopped taking it at some point.  ITP affects everyone differently, which makes it difficult to predict how someone will respond to a given treatment.  I'd be interested to hear if the prednisone works this time and what his hematologist recommends for treatment.  
14 Mar 2023 06:40
  • th8899
  • th8899
After 4 years of remission (100k+ without any med), my now 16-year-old son woke up this morning with petechiae all over his body. We rushed to ER, and the platelet was down to 5k. It is so frustrating. We all thought this was behind us now. ER doctor consulted his hematologist and put him on 60mg prednisone until our hematologist could see us sometime this week. Prednisone actually never worked last time, hopefully, it could do its wonder this time. I'd like to hear about any experience of relapse. Is it will be more difficult or easier to deal with?  Will the same treatment work again? Last time, Promacta put him into remission. Thanks
14 Mar 2023 00:10
  • MelA
  • MelA
th I would post this up in the adult section, general or treatment section - more people read there then here in the children's section.
Sorry your son's count hit the gutter - hopefully he'll be able to see his hematologist soon!!
Although I was never in the normal range after being on prednisone my count did hit the gutter after a tetanus booster, 1 WinRho IV got me back on track.   Not sure if WinRho is used as a treatment any more.

I  hope you all get good news this week!
12 Mar 2023 20:00
  • th8899
  • th8899
After 4 years of remission (100k+ without any med), my now 16-year-old son woke up this morning with petechiae all over his body. We rushed to ER, and the platelet was down to 5k. It is so frustrating. We all thought this was behind us now. ER doctor consulted his hematologist and put him on 60mg prednisone until our hematologist could see us sometime this week. Prednisone actually never worked last time, hopefully, it could do its wonder this time. I'd like to hear about any experience of relapse. Is it will be more difficult or easier to deal with?  Will the same treatment work again? Last time, Promacta put him into remission. Thanks
12 Mar 2023 19:53
  • th8899
  • th8899
My son's neutropenia also resolved itself after a little over 5 months.
11 Mar 2023 23:58
  • MelA
  • MelA
The blood thinner I was on after each knee replacement surgery to prevent clots was baby aspirin - can't recall if my friend was put on baby aspirin after stents were installed.   The baby aspirin increased my platelet count. 
10 Mar 2023 14:12
  • Carducci7292
  • Carducci7292
I have to undergo a cardiac catherization including an angioplasty and installation of a stent. As part of the follow up, my Cardiologist is saying I will have to take a blood thinner for 9 or more months until they can be sure the stent is staying in place correctly. 
Has anyone undergone a stent procedure and/or use of blood thinners as a flow up? If so, would you be willing to share your experiences including what adjustments you made to your ITP treatments? I am currently receiving a weekly injection of NPlate at a dosage of 1 mcg/kg.
Thank you in advance for any information you can provide.
07 Mar 2023 00:35
  • MelA
  • MelA
Chad I think I'd rather take something like that to ward off the artery calcification instead of taking it after the calcification is already there.  

Why I'm saying this is - a friend has osteoporosis, she was on fosamax for 5 years and was then taken off it, she did not want to take anything else so the endocrinologist told her to take Alive which is plant based calcium and other stuff - well she is now using a walker due to a couple compression fractures one is T12 and I can't remember the other one.  No problems while on fosamax but once off it and on plant based calcium she got the compression fractures.  As soon as she told me she had the T12 compression fracture I knew it was due to osteoporosis and not taking proper med to help and her surgeon told her the same thing.  
02 Mar 2023 10:31
  • Chad89
  • Chad89
Carducci, good morning. Have you done much research on vitamin K2? There are quite a few medical studies out on the effects it has with removing calcium from places it should not be (like arteries) and transporting it places it should (like bone). Start researching Vitamin K2 if you get the chance.
01 Mar 2023 23:53
  • MelA
  • MelA
01 Mar 2023 10:30
  • CindyL
  • CindyL
Hope it starts raising your counts soon, mrsb!
01 Mar 2023 01:49
  • mrsb04
  • mrsb04
Fostamatinib dose increased to 150mg twice a day from this morning. 
25 Feb 2023 05:09
  • mrsb04
  • mrsb04
I agree with Mel. Statins have had no effect on my count either 
24 Feb 2023 23:53
  • MelA
  • MelA
A statin has done nothing to my platelet count.
Personally I'd rather have a drop in platelet count than a heart attack!

I wish you well!!
24 Feb 2023 20:55
  • Carducci7292
  • Carducci7292
I have been diagnosed with a high level of calcification in my heart arteries. Treatment may include statins. 
I have been receiving N Plate injections weekly for about 3 years and my counts have remained above 100,000 with a few exceptions. 
Has anyone had experience with statins and if so did they have a negative effect on platelet count?
Thank you for responding.
24 Feb 2023 09:58
  • CindyL
  • CindyL
I don't usually have an issue when having to log back in.  This last time was different.  But it seems to be fixed now, so thank you, Jeff. 
I know sometimes when my computer does an update, I have to re-log in and that's to be expected.
Category: Social Chat
24 Feb 2023 09:28
  • Jeff
  • Jeff
It could have been that I was working on the site and clearing the cache, which was logging you out.  But I'm not sure.  Please let me know if this is a consistent problem now, or whether it is just sporadic.  Thanks, Jeff
Category: Social Chat
23 Feb 2023 09:53
  • CindyL
  • CindyL
That sucks, mrsb!  I didn't have that issue.  I was actually just sitting here wondering if there was a problem with my account.  I'm glad it's not just me having issues, but it sucks that we are.
Category: Social Chat
22 Feb 2023 14:53
  • mrsb04
  • mrsb04
I've had same problem today. Had to log in for each post I read on recent topics 
Category: Social Chat
22 Feb 2023 13:22
  • MelA
  • MelA
Hope that continues Cindy!!
Category: Social Chat
22 Feb 2023 13:15
  • MelA
  • MelA
Thank you mrsb!!    Our daughter in law is an RN and every now and then I get a couple boxes of candy & a card of "thanks for all you do" and give them to her to take to work for her & her colleagues just to let them know someone appreciates their hard work and dedication.

(and I do not expect, nor want, donuts or chocolates to be shared with patients - when I give them I expect those who worked hard to enjoy them)
22 Feb 2023 09:44
  • mrsb04
  • mrsb04
Show me a nurse who doesn't appreciate donuts or chocolates, or biscuits or cakes. Sometimes we were so busy that was what kept us going. 
21 Feb 2023 16:13
  • ImPatient
  • ImPatient
That's a good idea Mrsb04! I'll consider it, if my platelets drop again. I might have found what caused ITP for me- MAYBE. They went up to 165000 a couple weeks after I stopped eating gluten, oat and buckwheat. Let's see if it stays that way. They finally discovered I have transglutaminase 6 antibodies... I really have no idea, I'll check in and tell about it once I can be more sure in a couple months or so. 
21 Feb 2023 09:39
  • CindyL
  • CindyL
Don't know what you did, Jeff, but thank you!  I didn't have to log in today!
Category: Social Chat
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