IVIG and Rituximab

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.

I'd be interested to see the article can you post a link?
Have you tried Avatrombopag?

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

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 !  
 

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

WTow  Thanks for the link. How long were you taking Avatrombopag for? 
 

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!!

I took Doptolet for about 2 1/2 months. For a while it seemed like it was working and then it stopped

Did you have multiple different doses in that time?

I followed the dosage recommendations from manufacturer which were different over the time I took Doptolet

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?

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

So you did all 6 stages in 2.5 months. 

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

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. 
 

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
 

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.

Well said, mrsb

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!.
 

Have you ever taken IVIG while on Doptelet and if so, did your numbers rise dramatically (like into millions). We had that issue where nothing worked until we combined Doptelet with IVIG or with dexamethasone.

After noticing this effect, we started taking Quercetin Phytosome together with Doptelet to see if any immunosuppression from it would clear the way for Doptelet to raise levels. 2 weeks into taking Quercetin Phytosome and her numbers started rising for the first time in almost 1 year without salvage IVIG or Steroids. No other changes were made. It has been a few weeks since taking and her platelets are around 220 and rising. Hoping to lower Doptelet dosage if it continues. I wrote a post on it in the natural treatments forum.

What is most unfair about dealing with ITP is the myriad drug and treatment combinations that work well for some and not so well for others. For what it is worth, I ended up in the hospital for 10 days in 2020 with a platelet level of 2. I was 54 at the time and had not been a patient in a hospital since my tonsil removal as a kid in the 70's. I was in really good health and had never heard of ITP which is what I was diagnosed with.

They tried a platelet transfusion(which was doomed to failure) along with prednisone and two IVIG treatment sessions. After 10 days with little improvement they changed that course of action to four Rituximab infusions(over a four week period) along with an Nplate injection with each infusion. I then continued with weekly Nplate injections over the next three months. A week or so after the final Rituximab infusion my platelet levels had finally climbed to well above 100 where they have remained since. I havent even had them checked in a couple of years.

I am one of the fortunate ones I suppose. Now its as if I never had the issue to begin with.

We were never promised a rose garden gozorakgogo (I'd get stuck with the thorns so I'm glad I wasn't promised one) - I sure most of us never heard of ITP before we were diagnosed with it. Prednisone worked for me but not with a count in the normal range. WinRho IV worked for me when a tetanus booster tanked my count. The only certain thing about ITP is that there is not anything certain about it! It wouldn't hurt you to have a count done yearly along with a physical, a smart thing to do for your own good.

Well, I consider myself fortunate. Every six months or so when revisit this site just to keep up I feel for those who have been newly diagnosed as well as those who have suffered for years without finding the "right" treatment(s).