Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
×

Advanced Search

Search by Keyword
×

Search Options

Find Posts from
Sort Results by
Search at a specific date
Jump to Result Number
Search in Categories
×

Search Results

Searched for:
Yesterday 21:02
  • sacapli
  • sacapli
I have not ever been on Doptelet, but I would like to know how this goes for you :-)
Yesterday 19:09
  • GaryG1
  • GaryG1
Anyone been on Doptelet longer then 3-6 months?
Yesterday 19:03
  • GaryG1
  • GaryG1
I have had ITP for over 40 years. I had a splenectomy in 1981 which did not cure my ITP. I have been able to live a normal life without a spleen and with counts that varied in the 15-75 range. I have tried and reacted negative to most all of the normal ITP treatments. Was on low dosage prednisone for many years and finally got off that a couple years ago. Been getting weekly NPlate injections for last two years that kept counts in the 40-100 range. Because I’m on Blood thinners from past Blood clot Heart attack I need to keep my counts above 100. I just started Avatrombopag (Doptelet) this week to try to get away from weekly injection trips 45 minutes away every week.  I will let you know how the this journey goes for me counts.
Yesterday 17:01
  • RG
  • RG
I apologize for this very broad question.   Short version is that my platelets have been bouncing from 102 to 134 the last couple years (no, the hematologist isn't concerned about those numbers - which he calls hardly thrombocytopenia at all).   But at the end of Dec and early Jan, my whites fell too - not bad, from 4.3 to 3.66 (all my reds are fine).   So he ran a suite of tests, one of which was the ANA (antibodies) screen, as he was thinking this was an autoimmune issue.  Nope, the ANA came back negative.   So my first question:   How many of you diagnosed with ITP have had a negative or positive ANA?   Second question:  do many of you also deal with low white cells as part of ITP?  
As of today, my hematologist (really an oncologist) is lightly toying with a marrow biopsy to confirm or rule out myelodysplastic syndrome (MDS).  This would be after one more CBC in April.  He's thinking that if all tests so far are negative, perhaps we should check to make sure the two falling cell numbers aren't indicating MDS.   I'm ok with his logic, I'm just trying to be clear in my head whether or not ITP is or isn't a diagnosis of elimination and/or idiopathic.  Hence my question about the ANA.   Thanks for any thoughts.  
23 Jan 2022 10:36
  • sacapli
  • sacapli
I would like to know if anyone has been taking Nplate injections for at least 8 to 10 years?  
Thank you
23 Jan 2022 10:34
  • sacapli
  • sacapli
Hello, in response to the N-plate comments I would just like to say, I have been taking the injections for about 3 yrs. When I started my journey with ITP, my platelets went as low as  "1"  then "3"  then "10"  I took the ivig infusions for awhile, my system would not tolerate promacta, and steroids did nothing.  I really tired of the infusions, due to time, 4 hrs and putting someone else out to chauffeur me.  So my doctor asked if I wanted to try Nplate.  It worked, and I have no side effects, my dosage goes from   .46 to .50 depending on where I'm at. This keeps my numbers between 130 and 220, although 2 weeks ago, they were 420, and last week 250!!  My only concern is, longterm, what does this do?  Am I compromising something else to save platelets, that won't be known until its too late?  They tell me no, but then how much kick back are they getting from that $4000 a week?  I haven't needed an injection for 2 weeks, so hopefully I can keep doing whatever it is I've been doing, and keep them up.  And YES the roller coaster is frustrating!!  Also just a little FYI I have found that Choline will bring the number up, all you need is 1/4 teaspoon. I take it with applesauce, it is very bitter. The powder form is more effective.  I get mine from Bulk Supplements.com  its 600mg  and a 3.5oz bag, it will last a very long time, shelf life is approx 18mo. to 2 yrs.  Choline has many benefits. Just dont take more than recommended, because it can cause diarrhea. Good Luck everyone!!! 
22 Jan 2022 07:24
  • rmunns
  • rmunns
Thank you. This is not my first immune disorder. I am trying to get my hands on all the information I can. Knowledge is very help to me. 
22 Jan 2022 03:23
  • mrsb04
  • mrsb04
22 Jan 2022 03:22
  • mrsb04
  • mrsb04
sonyalea
I never managed to keep a stable count with Romiplostim but if I were you I would definitely titrate the dose down and see what happens.
Have you got Avatrombopag in Canada? Can you get onto any drug trials? 
I would think very seriously about a splenectomy  and research risks associated and duration or response. 
22 Jan 2022 01:23
  • sonyalea
  • sonyalea
Thanks for your help. I started on NPlate last year after my platelets plummeted to 11k, and these treatments failed—Dex, Prednisone, Rituximab, and Revolade. Even IVIG is very difficult with migraines, and sometimes anaphylactic shock. My dose is about 3/4 of a 250 mcg vial, or about 180 mcg. This results in platelets between 100 - 250k. My insomnia is very challenging, and I'm losing several nights of sleep each week, along with joint pain, and of course, fatigue. I'm trying to see if I can reduce this dose to get to a platelet result of 60-100k with less side effects, but I also lead an active life, and don't want to put my body in peril from a fall. I'm considering splenectomy once the covid crisis here is over. I'm wondering if anyone has looked at dosage with N plate, and had success at decreasing side effects?
21 Jan 2022 09:48
  • rmunns
  • rmunns
I was diagnosed 1 week ago. I woke up with blood in my bed and huge blood blisters in my mouth. Went to hospital and my platelets were less than 1. Spend a few days in the hospital doing steroid treatment. Went home platelets 90,000. Three days later Woke up with blood on my pillow, mouth blisters. Went to ER. Platelets less than 1. Did transfusion, ivig, steroids. Platelets up to 38,000. They think they will discharge me today. Prior authorization request sent for Promacta.  Any thoughts on knowing your platelets have dropped prior to bleeding? Other thoughts on how I take care of myself at home. Things to do and don’t do
21 Jan 2022 09:24
  • CindyL
  • CindyL
Sorry mrsb, I was replying to Mel's question about not being able to get vaccinated unless under 50.
Category: Social Chat
20 Jan 2022 16:25
  • mrsb04
  • mrsb04
Cindy L
No no to whom? 
Category: Social Chat
20 Jan 2022 10:01
  • CindyL
  • CindyL
No, no, when the boosters were available here, I was told I would be getting the Pfizer because that was what I got for my second dose.  Then the top docs said, nope, we're going to save the Pfizer for those under 50. Less heart issues with it, I guess.
Yes, Paxlovid is it.  Yeah, I think I hear that was what it was going to be used as.
No sick feeling, but just blah! Sometimes a little weak/shaky.  And very tired!
With this lockdown, we're in a one-family bubble and our apartment building is closed to visitors.  Can't even get out with my sister. And Saturday, my nephew tested positive.  He got it from the guy he travels to work with. If he tests negative tomorrow, Friday, he can go back to work on Saturday. Sister and BIL tested negative.
Category: Social Chat
20 Jan 2022 03:52
  • mrsb04
  • mrsb04
Paxlovid (nirmatrelvir  & ritonavir ) an oral tablet made by Pfizer for the treatment of Covid not as a vaccine 
Category: Social Chat
20 Jan 2022 00:36
  • MelA
  • MelA
Cindy I've never felt sick to my stomach when my thyroid med was reduced - and believe me I have had many large swings to both hypoT and hyperT.   The last was in 2018 when my TSH went to 11.something, never did know why.   I'm sorry you can't even just get a blood test to check your TSH.  But a lockdown is a lockdown - hopefully you can get it soon!! 

Are you saying you can't get a covid vaccine if you are over 50?  I haven't heard of a Pfizer pill, will have to search for it.  I really don't consider myself immune-compromised since I'm not on any kind of treatment to cause that, I just consider myself having a wacky immune system due to all my autoimmune "things" :) 
Category: Social Chat
20 Jan 2022 00:27
  • MelA
  • MelA
THC
As I mentioned in the other thread you started asking this - why not ask your hematologist if you can or can't or shouldn't?
19 Jan 2022 11:19
  • JJ
  • JJ
THC
Why can't you drink alcohol?
19 Jan 2022 09:36
  • CindyL
  • CindyL
Regulations are changing around here every day! It's hard to keep up with all the changes.  I heard this morning Canada has approved the Pfizer pill for those immune-compromised and over the age of 60.  Yet I couldn't get the shot because I'm over 50!
I am feeling better from that but now I'm wondering if I'm having a reaction to the reduction of my thyroid meds.  I was supposed to get a blood test at our last doctor's appointment, but we're in a level 3 lockdown, which means no testing unless emergency.
Category: Social Chat
19 Jan 2022 03:33
  • mrsb04
  • mrsb04
THC
Who says you cannot have alcohol ?
19 Jan 2022 01:46
  • Ravenfam1
  • Ravenfam1
THC
Anyone use THC since we cant have alcohol?
19 Jan 2022 00:27
  • MelA
  • MelA
Oh Cindy I'm so sorry the booster did you in - hope you are feeling back to normal now!!
Yeah, my understanding was those getting the Moderna it was a 1/2 dose for the booster.  Mine was Pfizer and I didn't have a problem - who knows though could get a reaction with the 4th one, but they aren't doing that here that I know of.
Category: Social Chat
19 Jan 2022 00:21
  • MelA
  • MelA
That's the pits mrsb!!  I'm so sorry!!  Thankfully you are asymptomatic though.  Sure hope the PRN 1008 trial does restart soon, and you are in it!!  Boy won't it be nice to get down & off pred - it is the drug we love to hate that for sure!!
19 Jan 2022 00:14
  • MelA
  • MelA
TCH
Since I don't drink except for a couple beers a year and don't care to get high I can't answer your question - why not ask you hematologist.
18 Jan 2022 15:16
  • Ravenfam1
  • Ravenfam1
TCH
Since alcohol is prohibited with my ITP, Does THC affect platelets?
18 Jan 2022 09:36
  • CindyL
  • CindyL
I'm sorry to hear this, mrsb!
I hope you can get into the trial when it starts back up!
18 Jan 2022 08:10
  • PoppyLapine
  • PoppyLapine
Thanks! That makes sense.
18 Jan 2022 01:29
  • mrsb04
  • mrsb04
Counts can be high in auto immune conditions
17 Jan 2022 17:09
  • PoppyLapine
  • PoppyLapine
I was diagnosed last year with ITP and have done a multitude of CBCs. My platelets have stayed between the 30s and 50s, so happy with that. But I have noticed that my absolute eosinophils and basophils have been high, like at least 2/3rds of the time. I'm still relatively new to ITP, so is this "normal"? Has anyone else had this reading on their CBC? Or is it totally unrelated? I have my routine appointment with my Hematologist tomorrow, so I'll ask him his thoughts on it, but I was just curious on other peoples exsperiance.
17 Jan 2022 17:02
  • mrsb04
  • mrsb04
Count still in the gutter but apart from clumsiness induced bruising I'm asymptomatic.  
Count = 6 on 10mg Pred and 50mg Eltrombopag.  It is obvious that Pred is having zero effect on my ITP. It is having a massive effect on my sleep  and cognitive abilities.
Saw consultant this morning and told her I couldn't stand Pred any longer  and was going to taper off it. She was very understanding and in agreement so dropped down to  7.5mg, Eltrombopag up to 75mg and oh joy of joys demoted back to weekly bloods. 
May need another try at IVIg if count persists in single figures. 
I also now have TXA in reserve in case I develop active/mucosal bleeding. 
On a positive front it looks like the PRN 1008 trial will restart next month. 
Displaying 1 - 30 out of 70647 results.

Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo