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  • MelA
15 Jun 2024 00:02
Replied by MelA on topic IVIG and Rituximab
Wtow I am so sorry that happened to  you, and after that happened I'm even more sorry that your hematologist decided to try a smaller dose - bless you!!
  • MelA
15 Jun 2024 23:58
Replied by MelA on topic On/off ITP
Hi Lul92,
I would post this up in the Adult section in General ITP Discussion - more people will see it there!
Good luck to your son, I hope he continues to have a good platelet count!
  • WTow47CLondCty
17 Jun 2024 10:29 - 17 Jun 2024 10:29
Replied by WTow47CLondCty on topic IVIG and Rituximab
I took Doptolet for about 2 1/2 months. For a while it seemed like it was working and then it stopped
  • WTow47CLondCty
17 Jun 2024 10:35
ITP and ESRD was created by WTow47CLondCty
Does anyone have ITP AND End Stage Renal Disease and is on Hemodialysis.  I have Polycystic Kidney Disease which caused my kidneys to fail and as a result I am on Hemodialysis.  I also have been diagnosed with ITP with no successful treatments so far.  I am wondering if the ESRD has more to do with my problem with low platelets than the ITP.  Maybe I don't have ITP ?????
  • mrsb04
18 Jun 2024 02:39
Replied by mrsb04 on topic IVIG and Rituximab
Did you have multiple different doses in that time?
  • mrsb04
18 Jun 2024 02:44 - 18 Jun 2024 02:49
Replied by mrsb04 on topic ITP and ESRD
I was a renal nurse for many years.
Haemodialysis itself does not lower platelets but if you are being anti coagulated with Heparin during your treatments you may well have developed HIT, (Heparin Induced Thrombocytopenia). In which case you will need to try something like Lepirudin instead of Heparin.
  • WTow47CLondCty
18 Jun 2024 12:13
Replied by WTow47CLondCty on topic IVIG and Rituximab
I followed the dosage recommendations from manufacturer which were different over the time I took Doptolet
  • mrsb04
18 Jun 2024 15:14 - 19 Jun 2024 01:33
Replied by mrsb04 on topic IVIG and Rituximab
Did you regularly change doses or give it a few weeks at each dose ? I only ask as my dose kept getting changed and my count was all over the place. Then a consultant pharmacist suggested I stay on the same dose for about 3 months to see what happened and my count levelled out.  

Do you have Heparin on dialysis?
  • WTow47CLondCty
19 Jun 2024 06:36
Replied by WTow47CLondCty on topic IVIG and Rituximab
No Heparin
Again, I followed what the Doptolet manufacturer said. You started out taking Doptolet on a stagerd regimen and the worked up to an every day routine
  • mrsb04
19 Jun 2024 07:33
Replied by mrsb04 on topic IVIG and Rituximab
So you did all 6 stages in 2.5 months. 
  • WTow47CLondCty
19 Jun 2024 11:28 - 19 Jun 2024 11:43
Replied by WTow47CLondCty on topic IVIG and Rituximab
If you go to this website   doptelet.com/themes/pdf/prescribing-information.pdf    and download the PDF and look under sections 2.1 and 2.2 you will see the prescribing info.  That is what I followed
  • mrsb04
19 Jun 2024 16:29
Replied by mrsb04 on topic IVIG and Rituximab
I am fully aware of the dosing regime. I have been on it for over a year. I was  just wondering if your protocol was different to over here in the  UK. It appears it is the same but I was puzzled as you said it took you less than 12 weeks to reach stage 6. 
 
  • WTow47CLondCty
19 Jun 2024 17:48
Replied by WTow47CLondCty on topic IVIG and Rituximab
I'll try this agian: According to Tabke 2 ;IF PLATELETS ARE LESS THAN 50 AFTER AT LEAST 2 WEEKS INCREASE THE DOSE LEVEL PER TABLE 3.  Wait 2 weeks to assess the effects of each regimes.
At no time did my platelet level get any where near 50.
1 st 2wks took 20mg per day
2nd 2wks took 20mg 2 x wk for 2 wks
3rd  2wks took 20mg 3 x wk for 2 wks
4th 2wks took 40mg 3 x 20mg 4 x wk for the same 2 wks
5th 2 wks took 40 mg daily for 2wks
TOTAL OF 10 WKS (2 1/2 MONTHS)

AT THAT TIME MY PLATELETS WERE STILL WELL BELOW 50 WITH NO SIGN OF RISING SO AS PER DOPTOLET WE STOPPED TREATMENT. 
Actually Doptolet says: Discontinuation: Discontinue DOPTELET if the platelet count does not increase to greater than or equal to
50×109 /L after 4 weeks of dosing at the maximum dose of 40 mg once daily.

The highest reading I got was 36 one week and then it went back into the 20's.  Just no signs of working
 
  • Liwen
19 Jun 2024 22:58
An anxious mom was created by Liwen
Hi, everyone

My son is 18 years old, he was recently diagnosed ITP. His platelet count dropped to 16 in a month but he didn't have symptoms.
Does anyone have any recommendations for a great ITP doctor near Pennington, Princeton or Lawrenceville NJ?
Thanks!
  • MelA
20 Jun 2024 00:04
Replied by MelA on topic ITP and ESRD
Thank you mrsb - I was hoping you would see this thread since you are/were a renal nurse!
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