Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

IVIG and Rituximab

More
1 month 11 hours ago #73590 by WTow47CLondCty
IVIG and Rituximab was created by WTow47CLondCty
Just read an article on the National Library of Medicine in which you start out on IVIG then add Rituximab which is tapered off over a 6 mos. period ending with just a once a mos. regimen of IVIG.  Wondered if any body has tried this and what there success rate was.  I have tried about every thing with minimal success.  Either what I try works for a while and then fails or I have a bad reaction.  I tried Promacta and had a bad reaction.  Also tried Win Rho and ended up in the hospital twice.  N-Plate worked for the longest but than gradually petered out.
Any ideas.

Please Log in or Create an account to join the conversation.

  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
More
4 weeks 1 day ago #73591 by mrsb04
Replied by mrsb04 on topic IVIG and Rituximab
I'd be interested to see the article can you post a link?
Have you tried Avatrombopag?

Please Log in or Create an account to join the conversation.

More
4 weeks 1 day ago - 4 weeks 1 day ago #73592 by WTow47CLondCty
Replied by WTow47CLondCty on topic IVIG and Rituximab
Here is the article www.ncbi.nlm.nih.gov/pmc/articles/PMC6058053/
Yes we tried Doptolet and followed the manufactures dosage regime.  The highest my platelets got were 32000
The following user(s) said Thank You: mrsb04

Please Log in or Create an account to join the conversation.

More
4 weeks 1 day ago - 4 weeks 1 hour ago #73594 by MelA
Replied by MelA on topic IVIG and Rituximab
WTow I would be interested in what happened with WinRho that put you in the hospital twice!!   I had one IV of WinRho about 22 years ago after a tetanus booster sent my count to the gutter - that one IV brought my count to a decent level and basically a steady count (not in the normal range but a good count).  I had no problem with WinRho - it was given as a slow drip IV not a push.

Thank you in advance !  
 

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

More
4 weeks 19 hours ago - 4 weeks 19 hours ago #73595 by WTow47CLondCty
Replied by WTow47CLondCty on topic IVIG and Rituximab
The WinRho first caused me tot have the chills, then a fever of 102.2 and severe kidney pain (I have Polycsytic Kidney disease and am on dialysis) and weakness to the point that I could hardly walk. The dialysis center sent to the hospital. Not much was done other than observation.
About 3 weeks later I tried a weaker dose of Win Rho and I had negative results again including severe kidney pain that resulted in ruptured kidney cysts, hematuria and my HgB dropped to 6.6
The following user(s) said Thank You: MelA

Please Log in or Create an account to join the conversation.

  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
More
4 weeks 10 hours ago #73597 by mrsb04
Replied by mrsb04 on topic IVIG and Rituximab
WTow  Thanks for the link. How long were you taking Avatrombopag for? 
 

Please Log in or Create an account to join the conversation.

More
4 weeks 2 hours ago #73598 by MelA
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!!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

More
3 weeks 4 days ago - 3 weeks 4 days ago #73600 by WTow47CLondCty
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

Please Log in or Create an account to join the conversation.

  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
More
3 weeks 3 days ago #73602 by mrsb04
Replied by mrsb04 on topic IVIG and Rituximab
Did you have multiple different doses in that time?

Please Log in or Create an account to join the conversation.

More
3 weeks 3 days ago #73604 by WTow47CLondCty
Replied by WTow47CLondCty on topic IVIG and Rituximab
I followed the dosage recommendations from manufacturer which were different over the time I took Doptolet

Please Log in or Create an account to join the conversation.

  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
More
3 weeks 3 days ago - 3 weeks 3 days ago #73605 by mrsb04
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?

Please Log in or Create an account to join the conversation.

More
3 weeks 2 days ago #73606 by WTow47CLondCty
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

Please Log in or Create an account to join the conversation.

  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
More
3 weeks 2 days ago #73607 by mrsb04
Replied by mrsb04 on topic IVIG and Rituximab
So you did all 6 stages in 2.5 months. 

Please Log in or Create an account to join the conversation.

More
3 weeks 2 days ago - 3 weeks 2 days ago #73608 by WTow47CLondCty
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

Please Log in or Create an account to join the conversation.

  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
More
3 weeks 2 days ago #73609 by mrsb04
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. 
 

Please Log in or Create an account to join the conversation.

More
3 weeks 2 days ago #73610 by WTow47CLondCty
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
 

Please Log in or Create an account to join the conversation.

  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
More
3 weeks 1 day ago #73613 by mrsb04
Replied by mrsb04 on topic IVIG and Rituximab
That's a 5 stage protocol starting at stage 4 then going back to stage 2. As you appear intolerant of my questions I will not communicate with you any more. I hope you get sorted out.

Please Log in or Create an account to join the conversation.

More
3 weeks 1 day ago #73614 by Margaret
Replied by Margaret on topic IVIG and Rituximab
Well said, mrsb
The following user(s) said Thank You: CindyL, mrsb04, MelA

Please Log in or Create an account to join the conversation.

More
3 weeks 1 day ago #73615 by MelA
Replied by MelA on topic IVIG and Rituximab
I'm sorry mrsb - I figured with your background someone with renal problems would be happy to have your knowledge & experience passed on to them.       I appreciate you and I don't have renal problems!.
 

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: mrsb04, Margaret

Please Log in or Create an account to join the conversation.