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  • MelA
21 Jun 2023 00:05
Replied by MelA on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
 Can understand your reasoning not to up Ava to 3x a week!   Your consultant sounds like he/she works with you instead of insisting you do this or that,  that's really good mrsb!   My fingers are crossed your count stays as is, that would be wonderful!!

Cindy I've had some NPs and PAs [physician assistant] who are better than MDs :)  
  • mrsb04
21 Jun 2023 03:37 - 21 Jun 2023 03:47
Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
Cindy
She is a medical doctor and is currently head of the haematology department I attend, which incidentally is also one of the UK ITP Centres of Excellence. 
  • CindyL
21 Jun 2023 09:20
Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
Thanks, mrsb.  I had the head hematologist too.  I no longer see him.
Since I have the BRCA gene, I see the head of Oncology once a year.
Mel, I don't know if we have PA's here.  NP's are becoming more prominent though.  Both Steven and I have seen them.
  • Vancouver40
24 Jun 2023 01:14
Replied by Vancouver40 on topic Stopped Overhydration and Added Electrolytes to Increase Platelets Naturally
Wishing to update my post, as I recently saw an excellent video that discussed exactly this topic of overhydration, loss of electrolytes and it's impact on blood, which relates to thrombocytopenia and those of us with ITP. The title of the video is The 4 COMMON MISTAKES We Make When Drinking Water! | Dr. Steven Gundry. I believe Dr. Steven Gundry, who is a heart surgeon, validates my previous experience that overhydration needs to be avoided, as it can impact the electrolyte levels in our body, which assists with processes such as our blood production, including platelets. Further, Dr. Steven Gundry discusses the importance of water quality one consumes to ensure the natural processes of the body are healthy, which benefits healing. Highly recommended viewing for those with ITP! 
  • MelA
24 Jun 2023 12:03
Replied by MelA on topic Stopped Overhydration and Added Electrolytes to Increase Platelets Naturally
Vancouver it is the same with everything - moderation.   Why buy vitamins that have 1000% of the daily requirement of this or that - all these "mega" things cannot be healthy.  So I'd say that's the same with liquids!     Dr. Gundry is a former cariologist, cardiac surgeon & researcher now an author with his own line of products & experimental clinic investigating diet.  I'd say use common sense!  
  • Vancouver40
25 Jun 2023 02:07
Replied by Vancouver40 on topic Stopped Overhydration and Added Electrolytes to Increase Platelets Naturally
Forgot to mention video is available on Youtube! Again, it's titled The 4 COMMON MISTAKES We Make When Drinking Water! | Dr. Steven Gundry. Explains diuretic effect drinking too much water has on your electrolytes, which impacts blood production and hence platelets too. Great discussion on water for those with ITP. Highly recommended!
  • mrsb04
25 Jun 2023 04:11
Replied by mrsb04 on topic Stopped Overhydration and Added Electrolytes to Increase Platelets Naturally
Vancouver 40, 
Does Dr Grundy present a current  and appropriate  evidence base to back up what he is saying? Personally I would be very wary .

abbylangernutrition.com/dr-steven-gundry-review-factchecking-his-claims/
  • RinJin
27 Jun 2023 10:00
Seeking Advice: Platelets 48K, Doctor diagnosed Chronic ITP. No major Symptoms was created by RinJin
Seeking Advice, how to increase Platelets? 
Last eight years trend: every year my platelets are decreasing by 10K.
Doctors say: medicines will lot of side effects which will increase other diseases.
Kindy Suggest other natural methods to increase the platelets & your experiences. 
  • mrsb04
28 Jun 2023 06:38
Replied by mrsb04 on topic Seeking Advice: Platelets 48K, Doctor diagnosed Chronic ITP. No major Symptoms
Are these doctors specialist haematologists?
  • CindyL
28 Jun 2023 09:42
Here we go again!!!!!! was created by CindyL
Here we freaking go again!  Issues getting logged in on this site!  This is a new computer, I just cleared my cache and still says "session has expired, please log in".  This is really getting annoying!  It's not my computer, it's the site.
  • MelA
29 Jun 2023 00:00
Replied by MelA on topic Seeking Advice: Platelets 48K, Doctor diagnosed Chronic ITP. No major Symptoms
What is your platelet count right now?  What have your counts been the last 8 years?
Are you seeing a hematologist?
  • MelA
29 Jun 2023 00:04
Replied by MelA on topic Here we go again!!!!!!
Oh Cindy I'm so sorry!   Hopefully this can be straightened out, know it is frustrating for you!!
  • Jeff
29 Jun 2023 08:49
Replied by Jeff on topic Here we go again!!!!!!
Hi Cindy,

Sorry for the trouble.  This is a well known issue with this website system.  I changed some settings that relate to this problem.  Hopefully that will help.

- Jeff Cooper
  • CindyL
29 Jun 2023 10:06
Replied by CindyL on topic Here we go again!!!!!!
Thank you, Jeff!  I'm curious to know if I am the only one with this issue.  Is it because I'm in Canada?  Depending on when you made the changes, I had the same problem this morning.
Mel, it is frustrating.  But hopefully the changes Jeff made will help.  I shall see tomorrow morning when I come here.  I've been a member so long I don't want to set up a new account.
  • Jeff
29 Jun 2023 11:06
Replied by Jeff on topic Here we go again!!!!!!
Hi Cindy,

I made the changes at about 6:00am Pacific time.  I don't think creating a new account would help, since the issue is not specifically related to your account.  I believe others have experienced this same issue before, but the problem does not seem to be widespread.

Being in Canada may have an effect.  There may be different rules that your Internet service provider has to comply with, but I don't know enough about country-specific rules to say for sure.

If you can just stay logged-in to pdsa.org on your computer, I recommend that.  But I understand that the system might automatically log you out after a certain length of time.

Thank you, Jeff
  • mrsb04
29 Jun 2023 16:27 - 30 Jun 2023 03:14
Replied by mrsb04 on topic Here we go again!!!!!!
I get this problem on my iPad and iPhone but never on my MacBook. 
Currently it is 9:30pm UK time.
I  logged in 5 minutes ago on iPad  and immediately was told my session has expired. Logged in again and all is fine but only because I went to the recent topics menu before I tried the second login as I have found that to be a work around 
  • CindyL
30 Jun 2023 09:18
Replied by CindyL on topic Here we go again!!!!!!
Jeff, that's the issue.  I usually stay logged in to the site.  It's just lately it's been kicking me out/off after a couple of months. I even have it set to remember my password.
Even today I had to log out in order to get back in.
Mrsb, I don't even have PDSA on my tablet, but the last time I had this issue I did try to log in and had the same problem.
  • CindyL
30 Jun 2023 09:24
Replied by CindyL on topic Here we go again!!!!!!
Msb, I just tried that but all it gave me was "session expired, please log in again".
  • mrsb04
30 Jun 2023 17:35 - 30 Jun 2023 17:36
Replied by mrsb04 on topic Here we go again!!!!!!
Cindy just a thought have you cleared the caches and cookies  out lately? 
  • CindyL
01 Jul 2023 08:56
Replied by CindyL on topic Here we go again!!!!!!
Mrsb, that was one of the first things we did. Oh well, one of these days I'll go to log in and it will stick.
  • Chad89
02 Jul 2023 21:52
Replied by Chad89 on topic Relapse of ITP after 22 years
Hey. I’m sorry to hear that. I had ITP when I was 18 and then it was in remission for 13 years until I was 31. I also ended up having to get Rituxan and that was the last treatment I had. That was October of 2020. I worry about it all the time though. Anytime I see a bruise or petechiae I get concerned.
  • mrsb04
05 Jul 2023 05:55
Replied by mrsb04 on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
Count was 81 last week so bang on target 
  • CindyL
05 Jul 2023 09:02
Replied by CindyL on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
Yay!  Good news!
  • mhprice2000@msn.com
05 Jul 2023 21:19
Replied by mhprice2000@msn.com on topic Relapse of ITP after 22 years
59-year-old male here, living in New Mexico, diagnosed with ITP (count went to 0) in 2019 after an MMR booster shot.  I'm really sorry to hear about your relapse.  I think everyone has PTSD after dealing with ITP.  I had thought I was in remission after my splenectomy in 2020.  Then, I relapsed (8k and dropping) literally two days after a severe immune response to the second Covid Moderna vaccine shot in 2021.  I understand the trauma of looking in the mirror and seeing petechia after thinking it's all behind you.  I was put on Promacta, to which I responded (it didn't work for me before the splenectomy), and I've slowly been recovering since then.  What I will say to you is this, and I know it's hard to do: be patient and don't lose hope.  It takes time for your immune system to calm down after it's been riled up.  Hopefully rituximab and nPlate will work for you.
  • MelA
06 Jul 2023 00:08
Replied by MelA on topic Fostamatinib/Avatrombopag combination is now Avatrombopag only
Fingers crossed this continues mrsb - you have made my day!!

I saw the head of the teaching hospital's hematology dept for a 2nd opinion - I'm not crazy about "heads", he told me back in 1990 I "would" have my spleen removed - it is still where God put it.
  • Leo marvin
08 Jul 2023 15:33
Replied by Leo marvin on topic Rituximab
 I had a bad reaction to my last 2 rounds of rixuxmab.  My first round of 4 infusions several years ago got my numbers up from 10+/- after failure of steroids.  I crashed to 5, 2 months ago and decided on rixuxmab infusion to try and put me back in remission, first 2 infusions went fine…. No problems.  3rd put me in the emergency department with an anaphylactic shock.  Over a dozen injections would not reverse the reaction so I was rushed to the emergency ward where I spent the next 4 hours with various treatments to stop the reaction.  My 4th treatment a week later was administered slowly and within an hour I was starting to react negatively so it was stopped. Not sure where I go from here….  Any suggestions would be helpful!!
  • MelA
10 Jul 2023 00:31
Replied by MelA on topic Rituximab
I'm really curious why you were given a rituxan infusion a week after having an anaphylactic reaction to rituxan ??
  • Leo marvin
10 Jul 2023 05:36
Replied by Leo marvin on topic Rituximab
In retrospect,  I should have questioned the doctors decision to go ahead with the 4th and last treatment.  He thought I would be fine because I had 6 previous infusions that I had no reaction to.

 I’m the only person that has reacted like this…. So now I’m left with a count of 15 and wondering where I go from here.  Steroids did not work,  this is not working.  It’s definitely been a challenge to overcome.  I’m questioning both my reg doctor and the hematologist whom both have limited knowledge (my thoughts) of ITP.
  • MelA
11 Jul 2023 00:19
Replied by MelA on topic Rituximab
Leo I'm so sorry this happened to you.
I do question your doctor - I know someone who at the age of 40 after eating almonds for years had an anaphylactic reaction to them, years he had eaten them and then that happened, he eats them again he could die.  I can never have penicillin again because of very serious reaction to amoxicillin - my doctors know not to give it to me!   

I am fortunate to have a wonderful hematologist - he loves blood.  I honestly don't know much about the treatments - prednisone put me in a remission (counts low but stable & ok) and then a tetanus booster sent the count to the gutter and 1 WinRho IV had me back on trick - so I'm not much help to you there.   With the count of 15k do you have symptoms?   Can you get a 2nd opinion?
  • midwest6708
11 Jul 2023 10:37
Replied by midwest6708 on topic Rituximab
Leo, it appears to me you've tried only steroids and rituximab.  If you haven't tried a TPO-RA drug, I'd recommend that as your next step.  They are drugs that stimulate platelet production.  You can read about them at PDSA's page - pdsa.org/platelet-growth-factors.html .  

You can learn about other options in the treatment section of the PDSA site: pdsa.org/treating-itp.html
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