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18 Sep 2022 10:42
  • CindyL
  • CindyL
So far, we just need the four we already have had.  It has been suggested that because of my reaction to the Moderna this last time, that I not get it again.
I think that's all Steven had too. I'm glad it wasn't any worse for you!
I'm of the opinion that if I have to get a yearly shot like the flu one, I will.
18 Sep 2022 05:03
  • mrsb04
  • mrsb04
18 Sep 2022 05:02
  • mrsb04
  • mrsb04
Mel I am surprised you have never been told that ITP carries a  higher risk of clotting than in none ITPers. When I was diagnosed my GP read up on ITP as she had never had a patient with it. The first thing she said to me was never ever  get dehydrated now you have ITP. 
ITP caused by platelet destruction leads to a lower  platelet life span than that of  people without ITP therefore platelets do not reach maturity.
Immature  platelets are larger and stickier than mature ones therefore the risk of clotting is increased.
There are also theories surrounding micro particles of platelets circulating that could also lead to clotting. I am sure there was a post by Rob 16 about this a few years back. 
I have read papers that suggest TPORAs and IVIg carry an increased risk of clotting. This seems logical, assumimg  the person responds to treatment they would have a larger amount of immature platelets. 
18 Sep 2022 04:48
  • mrsb04
  • mrsb04
Just had my 5th. 4x Pfizer but this time Moderna. Apart from a mild soreness at the  injection site for 24 hours no other problems. 
17 Sep 2022 14:06
  • MelA
  • MelA
JJ are ITPers more prone to clotting events?  I didn't know that and will ask my hematologist when I next see him - he loves blood and knows an awful lot about ITP (more than most of the hematologists I've had).   I do know that a lady in a group here that used to meet had a stroke with a count around 5k.  I was told just because one has low platelets doesn't mean one can't have a stroke.  I also know one should not go from a low count to a very high count because that can/will cause a stroke.  (I was given baby aspirin for a couple weeks after each knee replacement to avoid a stroke)

Long time ago there was a thread asking if anyone had had a clotting problem - I think most of those that answered were taking a couple treatments, but won't swear that since it was a while back.  
17 Sep 2022 04:47
  • JJ
  • JJ
They found out a few years ago that having ITP means we are more prone to clotting events, even with low counts. So do your research before making any decision.
15 Sep 2022 02:43
  • mrsb04
  • mrsb04
Andy
Mel is correct this should  be a medical decision however it is your body and ultimately you have the final say.
Decisions regarding one's condition should be  informed, 2 way discussions between patient and doctor. 
Below are a couple of links (both well referenced papers) that may be of use to you 
ashpublications.org/thehematologist/article/doi/10.1182/hem.V15.3.8503/463004/The-Use-of-Anticoagulation-in-Patients-With 
www.ahajournals.org/doi/10.1161/JAHA.119.012596
15 Sep 2022 00:28
  • MelA
  • MelA
You need to talk with your hematologist about this - and also get your hematologist to confer with your cardiologist once you are seeing one!
Good luck!
15 Sep 2022 00:26
  • MelA
  • MelA
Andy we can't tell you if you could drop Eliquis - that is up to your doctors!   Has your hematologist and your cardiologist gotten together regarding your meds and the bleeding episodes?  I would have them communicate.  What you have asked us is what you should be talking to them about.

I'm sorry A-Fib has been added to the mix - sure hope all goes well for you!!
14 Sep 2022 21:37
  • Maxmia117
  • Maxmia117
I was feeling off and went to my primary who took an EKG strip due to my heart rate and she is sending me to the cardiologist for Atrial Fibrillation. I am on Tavalisse and at times when count drops due to illness or who knows what the hematologist has treated with a Dex pulse. Before all this I was on Prednisone and Rituxan . Any info on how they treat an ITP patient for A fib would be appreciated.  What ITP meds are allowed? What if Afib meds are needed? 
  
14 Sep 2022 18:28
  • DRoberts264
  • DRoberts264
I have been receiving treatment for the past 9 years on N-Plate. I recently was diagnosed with A-Fib and cardiologist prescribed Eliquis 5mg twice daily. Since I have been on Eliquis I have had several bleeding episodes most recently having to have a wisdom tooth extraction and was off Eliquis for about 10 days the resumed. I then developed a bleed 15 days post-op on my gums. Does anyone have any idea  if having a lower platelet count, mine is between 80-100 that risk for stoke is less than normal and maybe I could drop the Eliquis?
Thanks, Andy
14 Sep 2022 00:34
  • MelA
  • MelA
 The dark blue tabs above shows a tab Search - click on it and put in sheng xue ling.   Go to google & just put in sheng xue ling and see what comes up - there may have been a thread here and if so it should list it.
12 Sep 2022 16:17
  • sacapli
  • sacapli
I recently read that this Chinese (I don't trust much from China) herb, sheng xue ling, will increase platelet count significantly, has  anyone had any experience with this? 
09 Sep 2022 10:23
  • CindyL
  • CindyL
It was a bit of a shock to hear of the Queen's passing.
It's going to take time to get used to a King.  I have only ever known a Queen.
It's going to be hard referring to Charles as King instead of Prince.  I know I will miss her.
My heart goes out to you, mrsb, and your fellow countrymen at this difficult time.
Category: Social Chat
09 Sep 2022 09:51
  • CindyL
  • CindyL
I was wrong, ARC did come to New Brunswick!  They were up north, a couple of hours away from me. I haven't seen this past Tuesday's episode yet so I don't know if they were still here.
It's not Vanessa and Beverly, it's Veronica and Beverly.  Either way, I don't care for them.
Category: Social Chat
09 Sep 2022 09:43
  • CindyL
  • CindyL
Good luck on Monday!  Hoping for decent counts.
09 Sep 2022 02:29
  • mrsb04
  • mrsb04
It's going to be very strange. The majority of the nation have known no other monarch. 
Category: Social Chat
09 Sep 2022 02:26
  • mrsb04
  • mrsb04
08 Sep 2022 20:50
  • dru
  • dru
Hi, I have had ITP since 2005 and have been treated with prednisone and rituxan. I just relapsed after a 4 year remission. My platelets are 16 right now. I have a new hematologist and she is treating me with high dose dexamethasone.  I just wanted advice on managing side effects or any info from people who have used this protocol.   Also I have evans syndrome but it is only platelets afffected this time.
08 Sep 2022 15:09
  • MelA
  • MelA
I was saddened to learn of the passing of Queen Elizabeth - rest in peace dear lady.
Category: Social Chat
08 Sep 2022 15:04
  • MelA
  • MelA
My heart goes out to you Christine on the passing of your husband.  Dementia is a terrible thing, I'm sorry he & you had to deal with that.
Category: Social Chat
08 Sep 2022 14:31
  • MelA
  • MelA
Is your next count when you see the consultant Monday?  Hoping for a decent count for you mrsb!!
08 Sep 2022 10:41
  • CindyL
  • CindyL
Oh, ok, I understand now.  I guess I didn't realize that was part of the conditions for you to get into the trial.
08 Sep 2022 07:11
  • mrsb04
  • mrsb04
Cindy
One of the conditions of the trial was that I had to stay on the same dose of Pred I was on at the start for the duration. I'm allowed extra  as a rescue remedy but cannot go below 5mg. 
07 Sep 2022 09:54
  • CindyL
  • CindyL
Aw, mrsb, that sucks that you have to stay on the pred for the rest of the trial.  Hopefully you won't be kicked out of it!
07 Sep 2022 06:00
  • sleev-les
  • sleev-les
Me too.  I just had an A1C done and it was 5.9.  But dealing with the ITP and also diabetic retinopathy makes for a lot of doctors appointments.  Definitely focusing on better eating and gym again.  I'm down 8 pounds so far and goal will be 40ish in total to lose.  Hoping that helps, but time and patience will tell.  :)
07 Sep 2022 02:37
  • mrsb04
  • mrsb04
Hi Melanie
I'm back down to 5mg Pred a day and have to stay there for the duration of the trial which in theory is another 18 weeks. 
So far there has been no mention of kicking me off the trial, but have been summoned to see consultant on Monday. 
07 Sep 2022 00:26
  • MelA
  • MelA
Oh I'm really sorry mrsb - how low are you on the pred now?   Will this disqualify you to continue the trial??
I'm sending hugs and good thoughts your way!!
06 Sep 2022 15:00
  • mrsb04
  • mrsb04
Oh I understand that. I never sleep on Pred above 10mg. I am simultaneously hypermanic, completely exhausted and foul to everyone.
It must be a nightmare for you having type 1 diabetes  too. I've been on the wretched stuff for over 8 years now. I get my HbA1c done every 4 months. Thankfully it has remained within acceptable parameters throughout. 
Fingers crossed you are soon off it again.
06 Sep 2022 12:46
  • sleev-les
  • sleev-les
Thanks for the response.  I would do this once a year to avoid the other drugs without hesitation.  I feel normal and more confident when I get a time of remission, even if just a year.  At least I know when to be on the lookout if that is the case.  I'm going to talk to the doc after I get my next results and push for it.  I can't fight blood sugar when on prednisone and deal with the other side effects.  I've been shaking all day today.  Its crazy and for some reason this time I can't sleep at night.  Wasn't like that before.  
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