Search Results (Searched for: )

  • MelA
24 Feb 2023 23:53
Replied by MelA on topic Treatment For Artery Calcification
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!!
  • mrsb04
25 Feb 2023 05:09
Replied by mrsb04 on topic Treatment For Artery Calcification
I agree with Mel. Statins have had no effect on my count either 
  • mrsb04
01 Mar 2023 01:49 - 18 Apr 2023 01:54
Fostamatinib dose increased to 150mg twice a day from this morning. 
  • CindyL
01 Mar 2023 10:30
Hope it starts raising your counts soon, mrsb!
  • MelA
01 Mar 2023 23:53
Ditto what Cindy said!!!
  • Chad89
02 Mar 2023 10:31
Replied by Chad89 on topic Treatment For Artery Calcification
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.
  • MelA
07 Mar 2023 00:35 - 07 Mar 2023 00:37
Replied by MelA on topic Treatment For Artery Calcification
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.  
  • Carducci7292
10 Mar 2023 14:12
Blood Thinners was created by 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.
  • MelA
11 Mar 2023 23:58
Replied by MelA on topic Blood Thinners
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. 
  • th8899
12 Mar 2023 19:53
Replied by th8899 on topic Severe neutropenia after first Pfizer shot
My son's neutropenia also resolved itself after a little over 5 months.
  • th8899
12 Mar 2023 20:00
ITP relapse after 4 years was created by 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
  • MelA
14 Mar 2023 00:10
Replied by MelA on topic ITP relapse after 4 years
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!
  • th8899
14 Mar 2023 06:40
ITP relapse after 4 years was created by 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
  • dmurashi09
14 Mar 2023 17:21
Replied by dmurashi09 on topic ITP relapse after 4 years
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.  
  • th8899
14 Mar 2023 18:12
Replied by th8899 on topic ITP relapse after 4 years
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.
  • mrsb04
15 Mar 2023 04:43 - 18 Apr 2023 01:48
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. 
  • CindyL
15 Mar 2023 09:19
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.
  • dmurashi09
15 Mar 2023 16:10
Replied by dmurashi09 on topic ITP relapse after 4 years
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.
  • th8899
15 Mar 2023 16:59
Replied by th8899 on topic ITP relapse after 4 years
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.
  • mrsb04
16 Mar 2023 03:04
Replied by mrsb04 on topic ITP relapse after 4 years
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. 
  • dmurashi09
16 Mar 2023 09:28
Replied by dmurashi09 on topic ITP relapse after 4 years
Good for you. It doesn't rule my life either.  I just take a few seconds each day to look.  No harm in that is there?
  • th8899
16 Mar 2023 20:11
Replied by th8899 on topic ITP relapse after 4 years
Honestly, this time we are so much calmer. I remember 5 years ago, when this happened the first time, our entire family was in panic and almost came to a standstill. This time he has very few symptoms, only some petechiae so far. Our hemo also agreed to wait for a little without any treatment and closely watch for symptoms. I thought 5 years ago, we really over-treated him. All these IVIG (12 rounds in 4 months) and prednisone (up to 100mg) caused a huge up and down of his count in a short period of time. I think it actually messes up his body and makes the symptoms even worse.
  • MelA
17 Mar 2023 00:22
Replied by MelA on topic ITP relapse after 4 years
Well darn it th - would have been nice if the prednisone had increased your son's count to a decent level - how long was he on it?
Good you are getting some blood test results that are normal - hope that continues.  It does seem that so many new ones here that were just diagnosed have been bombarded with many treatments all at once, the body can't like that (my opinion).  Maybe it is good to hold off on treatment for a bit to see if he may rebound on his own but watch closely for symptoms.  Boy it would be a blessing if his count would rebound to a decent level - fingers crossed for him!!

I've had ITP since 1989 and I certainly do not daily check for anything - I'm happy to be getting out of bed and being on the right side of the grass :)     And actually when my count did hit the gutter after a tetanus booster I didn't have 1 symptom, it was just a feeling that my count was low that sent me for a CBC.

Hang in the th - sounds like you are doing right by your son and that your son is handling this well.   
  • th8899
17 Mar 2023 15:00
Replied by th8899 on topic ITP relapse after 4 years
More test results are coming back today. I am really frustrated now. His ANA is positive, but dsDNA, Anti-SM, and Anti-RNP are all negative. Don't know what to think now. Waiting for our appointment with Hemo next Tuesday.
  • mrsb04
17 Mar 2023 17:35
Replied by mrsb04 on topic ITP relapse after 4 years
A virus such as the common cold can produce a temporary positive ANA.  
  • th8899
17 Mar 2023 17:39
Replied by th8899 on topic ITP relapse after 4 years
I wish that is the case. But his titre seems a bit high at 1:320. We will see what his hemo will suggests.
  • MelA
23 Mar 2023 00:06
Lots of "common side effects".
Has this been FDA approved for ITP or is it being used off label?
  • MelA
23 Mar 2023 00:17
Another week till you see your consultant, right?  Will be interesting to see if the increased Avatrombopag has helped.
What are we going to do with you ;)    Sorry to hear the side effect of Fostamatinib is causing trouble!   Take care & keep us posted please!!
  • mrsb04
23 Mar 2023 05:32
From what I can find it has not got FDA approval for ITP. It certainly isn't licensed for IT over here.
There does seem to be quite a bit of research going on regarding treating ITP with it however. 
Displaying 71551 - 71580 out of 72177 results.