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  • mrsb04
11 Feb 2023 15:21
Kats 1929
I haven't  sent you any emails 
  • Lourdes
11 Feb 2023 17:49
Replied by Lourdes on topic Just started Tavalisse (fostamatinib)
Hello! I’ve been taking Tavalisse for almost 3 years now and it has worked with “less dangerous side effects” for the most part actually taking my counts to almost 400 on occasion (100 x2 per day)

 It HAS increased my BP (I was already on meds for it) and I’ve been living with pretty constant - SORRY - diarrhea for almost the entire time. Sometimes I get by with Imodium and sometimes not even that helps.

The challenge with ITP as you know is that it can be so different among patients themselves with differing responses to medications. Please keep us posted. I hope things go remarkably well for you!
  • Lourdes
11 Feb 2023 17:58
Replied by Lourdes on topic Just started Tavalisse (fostamatinib)
Karen - My experience with platelet counts on Tavalisse has been similar to yours in that, on occasion, they go into the 200 - to almost 400 range. When it goes that high consistently, my provider and I have gotten excited and reduced the dose too 100 per day only to have something (like a COVID vaccine or an infection) happen, and they plummet.

So, we’ve settled on 100 x2 per day.
  • Lourdes
11 Feb 2023 18:16
Chad - I was in great shape after a splenectomy in 1993. I went almost 18 years without thinking about ITP and it “returned” after a flu shot in 2010. I had avoided flu shots forever.

That said, so glad that your counts are holding.

Be well.
  • MaryGwynne
12 Feb 2023 09:24
Re-immunizing after Splenectomy was created by MaryGwynne
My daughter had a splenectomy which successfully treated her ITP.  She now needs to be-re-immunized every 5 years to keep her immunity to bacterial infections strong in the  absence of a spleen.  Does anyone have a good list of the immunizations required?  the doctors we talk to seem to be googling for answers just as we are.  Looking for a definitive list.  Thanks for any assistance.  
  • CindyL
12 Feb 2023 09:53
Replied by CindyL on topic Re-immunizing after Splenectomy
Hi, Mary, the only immunizations I keep up on are the flu shot every year and the pneumonia shot every 5 years.  Other than that, I just live my life.
  • JandS
12 Feb 2023 15:55
ITP doctor in Pittsburgh? was created by JandS
Hi... My husband has ITP, which is being treated by Nplate, and he may be having a loss of response. We have an excellent hematologist, but we'd like a second opinion. We'll appreciate any recommendations!
  • mrsb04
13 Feb 2023 04:00
Replied by mrsb04 on topic Re-immunizing after Splenectomy
UK Guidelines
Make sure you have received all your routine immunisations (talk to your doctor or practice nurse, or visit  NHS.UK ); there are some extra immunisations people with asplenia or splenic dysfunction should have.In particular you should ensure you have received the following vaccinations to help prevent infections to which you are particularly vulnerable:
  • pneumococcal vaccine (PPV23) every 5 years
  • meningococcal ACWY vaccine
  • meningococcal B vaccine
  • influenza (every year)

Presumably not updated to include Covid 
  • CindyL
13 Feb 2023 10:10
Replied by CindyL on topic Re-immunizing after Splenectomy
I don't know if there are guidelines here in Canada.  I've never looked into it.  I haven't seen my hema dr since 2011 when I did the Rituxan.  My family doc watches me now.  I religiously get the flu shot every year and I think I'm due for the pneumonia shot next year.
With all the new suggestions for the Covid vax, we did ask our doctor about that and he said we're fine.   I'm sure if something changes, he'll be on top of it.
  • MelA
13 Feb 2023 23:54
Replied by MelA on topic ITP doctor in Pittsburgh?
Do you have a university/teaching hospital nearby?
  • JandS
14 Feb 2023 21:44
Replied by JandS on topic ITP doctor in Pittsburgh?
Hi... Yes, in fact we do, and there are several hematologists there. I was just hoping for a particular recommendation. Absent that, I am sure we'll be fine. Thanks.
  • MelA
14 Feb 2023 23:53
Replied by MelA on topic ITP doctor in Pittsburgh?
I saw the head of hematology at a university hospital - this was back in early 1990s - he told me "you will have your spleen removed" and to this day my spleen is still where God put it and doing the job it is supposed to do.  Wasn't impressed with that 2nd opinion :)  

You and your husband like his hematologist?   What is he recommending?
I honestly know nothing about Nplate - what is his count doing?
  • Lman
15 Feb 2023 23:53 - 16 Feb 2023 14:17
It was a hard journey lol. Thank God, and definitely the great hospital stuff.

Regarding dating, oh, I didn't date anyone for like 2 years after diagnosis. I now mostly do it for fun as I'm not ready for a long-term relationship.

And oh, I've started going to an ice skating class. Surprisingly it is only me wearing a helmet, while hamlets are mandatory in Canada. The good part is there are 13 ladies and only 2 males. A great dating pool ;)

Poseymint, I've heard work insurance is better than school insurance, right? So I hope I'm not going to have trouble with having meds covered after graduation if I still needed them. I just couldn't imagine what was the situation before ObamaCare, and being denied for having a pre-existing condition (the case in many other countries, like Canada). People would literally have to die! I hope no one's hand in the US ever gets to rescind ObamaCare. Amen.
  • Lman
15 Feb 2023 23:56
Gift to medical staff was created by Lman
I have a follow-up appointment soon. I was considering buying a gift for the hemo and his nurse who helped a lot setting up my meds. I don't know how it works in the US. Would it be ok to buy flowers for the doc and some chocolate for the nurse? Doc is 80 y.o man and his nurse is a 25 y.o lady. I don't know what the rules are here in the US. Checked the internet and some people had spoken against flowers because of allergies, and of course, I don't want to spend money on sth that I cannot give to them.

  • Lman
16 Feb 2023 00:08 - 16 Feb 2023 00:09
With all this dating stuff, I was still single on the valentines day (which was kinda sad on the night tbh) and I I'm kinda overworked too. Living in the US is kinda challenging. It is only work, work, work!
  • MelA
17 Feb 2023 00:05
Replied by MelA on topic Gift to medical staff
I've given donuts to the nursing staff at the hospital.

Also when a dermatologist Physicians Assistant finally figured out what my problem was, on the 1st visit no less, and got rid of a derm problem I'd had for many years [and seen all sorts of doctors about] - I sent her a card with a heartfelt note inside, I heard she appreciated that note more than anything!!   
  • poseymint
17 Feb 2023 00:16 - 17 Feb 2023 00:23
Replied by poseymint on topic Gift to medical staff
My hemo is part of a cancer clinic and just my opinion from 12 years there- my doctor doesn't accept gifts and it appears that no one does. He likely feels its unethical for him to accept a gift- hey he doesn't even like being thanked! He deflects it. But just what I've noticed at this particular cancer clinic, is when people bring in flowers, the flowers are set out on the front desk for the patients and everyone to enjoy. Or if its candy, baskets of fruit, it goes onto the back desk infusion room for the patients to eat the candy, fruit and enjoy the flowers. Also I think because of Covid they might not allow open boxes of candy, not sure but I noticed all the candy they have out is individually wrapped.

I think doctors might appreciate patients who write positive reviews on Yelp and online review sites.? That might be a way to express your appreciation or like Mel mentioned, a thank you card. Just my thoughts, sounds like you have excellent medical care.
  • MaryGwynne
18 Feb 2023 10:33
Replied by MaryGwynne on topic Re-immunizing after Splenectomy
Thank you!  
  • CindyL
20 Feb 2023 09:48
JEFF!!!!! was created by CindyL
What is going on with the site?   It is consistently telling me my session has expired and it takes me 3 or 4 (or more) tries to get logged in. I'm usually logged in all the time, but since Friday, I have to fight to get in.  This is really getting annoying.
  • MelA
20 Feb 2023 23:57 - 20 Feb 2023 23:58
Replied by MelA on topic Gift to medical staff
Flowers and chocolates and donuts are a token of thanks, in my opinion not a gift.  Eating chocolate or donuts a patient brings isn't unethical to me, it isn't a bribe or a way to get extra attention it is a thank you!  And knowing many nurses I know for sure they really appreciate donuts and being thought of.

When I have taken donuts to the hospital staff on the floor I was on or a friend was on they were then taken to the nurses break room for all the staff to enjoy.  Nothing wrong with donuts and a thank you note!

Personally due to allergies I think I'd skip flowers.
  • CindyL
21 Feb 2023 09:39
Replied by CindyL on topic JEFF!!!!!
Don't know what you did, Jeff, but thank you!  I didn't have to log in today!
  • ImPatient
21 Feb 2023 16:13 - 21 Feb 2023 16:14
Replied by ImPatient on topic Medical Alert ID
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. 
  • mrsb04
22 Feb 2023 09:44
Replied by mrsb04 on topic Gift to medical staff
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. 
  • MelA
22 Feb 2023 13:15 - 22 Feb 2023 13:16
Replied by MelA on topic Gift to medical staff
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)
  • MelA
22 Feb 2023 13:22
Replied by MelA on topic JEFF!!!!!
Hope that continues Cindy!!
  • mrsb04
22 Feb 2023 14:53
Replied by mrsb04 on topic JEFF!!!!!
I've had same problem today. Had to log in for each post I read on recent topics 
  • CindyL
23 Feb 2023 09:53
Replied by CindyL on topic JEFF!!!!!
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.
  • Jeff
24 Feb 2023 09:28
Replied by Jeff on topic 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
  • CindyL
24 Feb 2023 09:58
Replied by CindyL on topic JEFF!!!!!
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.
  • Carducci7292
24 Feb 2023 20:55
Treatment For Artery Calcification was created by 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.
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