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  • CindyL
09 Sep 2022 09:51
Replied by CindyL on topic Christine checking in!
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.
  • CindyL
09 Sep 2022 10:23
Replied by CindyL on topic Queen Elizabeth
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.
  • sacapli
12 Sep 2022 16:17
Sheng xue ling was created by 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? 
  • MelA
14 Sep 2022 00:34 - 14 Sep 2022 00:35
Replied by MelA on topic Sheng xue ling
 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.
  • DRoberts264
14 Sep 2022 18:28
ITP and Eliquis. was created by 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
  • Maxmia117
14 Sep 2022 21:37
Atrial Fibrillation was created by 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? 
  
  • MelA
15 Sep 2022 00:26 - 17 Sep 2022 00:22
Replied by MelA on topic ITP and Eliquis.
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!!
  • MelA
15 Sep 2022 00:28
Replied by MelA on topic Atrial Fibrillation
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!
  • mrsb04
15 Sep 2022 02:43 - 15 Sep 2022 02:44
Replied by mrsb04 on topic ITP and Eliquis.
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
  • JJ
17 Sep 2022 04:47
Replied by JJ on topic ITP and Eliquis.
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.
  • MelA
17 Sep 2022 14:06 - 17 Sep 2022 14:07
Replied by MelA on topic ITP and Eliquis.
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.  
  • mrsb04
18 Sep 2022 04:48
Replied by mrsb04 on topic Blah!
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. 
  • mrsb04
18 Sep 2022 05:02 - 18 Sep 2022 05:02
Replied by mrsb04 on topic ITP and Eliquis.
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. 
  • mrsb04
18 Sep 2022 05:03
Replied by mrsb04 on topic I have finally started the drug trial
Last Monday's count was 7 
  • CindyL
18 Sep 2022 10:42
Replied by CindyL on topic Blah!
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.
  • CindyL
18 Sep 2022 10:49
Replied by CindyL on topic I have finally started the drug trial
Aww, mrsb, I was hoping for higher for you!
Do you get tested every Monday?  Hoping they are higher tomorrow if you do.
  • mrsb04
20 Sep 2022 09:34 - 20 Sep 2022 09:40
Replied by mrsb04 on topic I have finally started the drug trial
Count is 11 which surprised me considering the mess the phlebotomist made of my arm. 
  • MelA
20 Sep 2022 19:09 - 22 Sep 2022 00:15
Replied by MelA on topic I have finally started the drug trial
Now that's more like it mrsb !!   Way to go !!

(Sorry about  your arm - some people just should not be sticking needles in arms!)
  • MelA
20 Sep 2022 19:12
Replied by MelA on topic ITP and Eliquis.
Nope, never heard of that being the case mrsb.   I do know that our platelets are young and sticky and big - but not that I'm more likely to have a stroke than my non-ITP neighbor.  I do know that we shouldn't be having our count go real high as chances for a stroke are higher.
  • CindyL
21 Sep 2022 09:30
Replied by CindyL on topic I have finally started the drug trial
Yay, mrsb!
I'm with Mel, sorry about your arm!
  • charlotte
23 Sep 2022 21:07
Splenetomy was created by charlotte
It's been years since I've been on this site many years ago I had splenetomy 2016 not by choice Had emergency surgery they found my spleen enlarged My platelets are in 100's since surgery I'm now compromised immune with the pandemic it scares me Had antibody testing after booster My hemo said body didn't make antibodies Has anyone had covid after splenetomy and few symptoms?
Also when leaving hospital 2016 was not told of future vaccines to have later So if someone could let me know I'd appreciate Thank you 

  • mrsb04
24 Sep 2022 03:18 - 24 Sep 2022 03:23
Replied by mrsb04 on topic Splenetomy
Charlotte 
Have a look at this list, it should help.
www.immunize.org/catg.d/p4047.pdf
  • CindyL
24 Sep 2022 10:57
Replied by CindyL on topic Splenetomy
I had my splenectomy in 2006 and the only vaccines I get are the flu shot,  the Pneumonia every 5 years and most recently, the Covid vaccine.
I'm pretty sure I had the MMR as a child and I do want to get the Shingles vaccine.  Unfortunately, it is very expensive here and we can't afford it.
That's quite a list you shared mrsb!  I wasn't told to get any of them other than the ones I mentioned.
  • mrsb04
25 Sep 2022 02:20
Replied by mrsb04 on topic Splenetomy
CindyL
I was directed to it from CDC site. 
  • CindyL
25 Sep 2022 10:15
Replied by CindyL on topic Splenetomy
Oh, ok.  Thanks mrsb.
  • mrsb04
25 Sep 2022 11:19
Replied by mrsb04 on topic Splenetomy
You're welcome 
  • MelA
26 Sep 2022 00:40
Replied by MelA on topic Splenetomy
Cindy - I was sent to an immunologist a few years back - he told me not to get the new shingles vaccine because it had not been tested on those with immune system problems - that may have changed since this was a while back.  I'll try to remember to ask my hematologist when I see him next, which hopefully won't be until the yearly check up late next year.   I have had shingles 2x already.
  • CindyL
26 Sep 2022 09:40
Replied by CindyL on topic Splenetomy
My family doctor is recommending both Steven and I get the shingles vaccine.  I think he says to get the 2 shot one.  We haven't discussed it in a while.
If I remember correctly, my grandmother had shingles.
Was it as painful as the tv ads suggest, Mel?
  • mrsb04
26 Sep 2022 10:13
Replied by mrsb04 on topic I have finally started the drug trial
Count is 10 today bruise from Flu vaccination last Friday one of the worst I've ever had.
Covid vaccination the week before and not a mark to be seen !!!!
  • midwest6708
26 Sep 2022 16:55 - 26 Sep 2022 16:56
Replied by midwest6708 on topic Splenetomy
This thread has gotten a little off track, but I hope Charlotte won't mind me adding my opinion about the newer, two-part shingles vaccine.  I don't want to talk anyone else out of shingles vaccination.  Just want to offer food for thought.

I decided I wanted the vaccine after declining it for many years, but I didn't just charge ahead.  I found a medically-reviewed article in US News and World Report from last November titled, "Why You Should Get the Shingles Vaccine Soon".  Dr. Ardeshir Hashmi, a geriatrician and endowed chair at Cleveland Clinic is quoted in the article.  He says that for people who have any sort of autoimmune disease, "the shingles vaccine, specifically, is not for them."  The entire article can be found here ~  health.usnews.com/health-care/patient-advice/articles/shingrix-shingles-vaccine

I didn't stop researching there.  I also learned that Shingrix is made with Chinese hamster ovary cells, the same as Rituxan, Humira, and some other drugs.  Since I had such an abysmal reaction to Rituxan, I'll have to take my chances with shingles itself.  
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