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Cyclophosphamide and Rituximab Combined Therapy

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1 year 5 months ago #73316 by ncanaday
Hi All,

I have been doing my own research because of the severity of my ITP case. Just a reference I have previously been on Steroids, IVIG, Rituxan, NPlate, Promacta, and now back to NPlate. Rituxan gave me a year of remission the first year and about 6-8 months the second time. I also have a very small therapeutic window according to my doctors with NPlate I have to get shots every three weeks because I overly respond or under-respond. My last injection was at 12, and my numbers every three days after that were 12 (again), 12, and then 501. The shot dose is 2mc and when we have reduced it, I go down to single digits. This has been the cycle for at least three months or so and it is really starting to concern me, be of the effects of the roller coaster.  Because of my response to treatment, the doctors have told me I have refractory ITP and called me brittle with a small therapeutic window while sharing with me that I am one of the most complicated patients they have ever treated. I know you all can relate to these complications of ITP so I'm not trying to be extra special, but I am trying to find some kind of treatment that may work for me. Today I came across this study and it showed a great response, so I thought I would check and see if anyone has done these together as a combined treatment. I have attached a copy of the link and the outcome data just for easy reference, but I am also curious if anyone has just had cyclophosphamide and I am curious how that went.

Feel Free to share your thoughts.
- Nick

Here is the link to the study:  www.ncbi.nlm.nih.gov/pmc/articles/PMC6395969/
Here is a clip of the outcomes:
GroupsCompletely effectivePartially effectiveMinimal effectiveIneffectiveTotal effective rateaP<0.05, compared with rituximab groupbP<0.05, compared with cyclophosphamide group.

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  • 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.
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1 year 5 months ago - 1 year 5 months ago #73318 by mrsb04
 Nick,

A small number of patients only in the study but interesting all the same.
Have you read this?  link.springer.com/article/10.1007/s00277-022-04786-y#Sec5   
If you cannot access it I have a pdf copy I could e mail if you wanted. 

As a retired renal  nurse I would err on the side of caution and if you do choose cyclophosphamide please ensure you have your kidney function checked prior to treatment then, assuming it is ok, monthly thereafter. Over the years I nursed several patients who developed a degree of kidney failure as a result of taking it, some of whom ended up on dialysis. It also has many more horrendous side effects. 

I too am refractory to many  treatments (Azathioprine, MMF, Romiplostim, Eltrombopag, Fostamatinib, Rilzabrutinib, IVIg).  
High dose steroids  work but obviously that  is not a long term answer.

Admittedly I have yet to try Rituximab. When I was diagnosed 9 years ago I had 2 young grand kids (i.e. germ factories) I would have had  to stay away from.   I could not do so as I provided child care for their working parents.  They are older now so I may well have to try it sometime.

I notice you haven't mentioned Avatrombopag (Doptelet). It might be worth a try. I have  been taking it since March this year with no noticeable side effects.  It has taken a while to sort the dose out but am now on 20mg 3 times a week,  my last platelet count was 64. 
 
Good luck with whatever you choose and please update us as and when.
The following user(s) said Thank You: ncanaday, MelA

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1 year 5 months ago - 1 year 5 months ago #73319 by MelA
Always appreciate your opinions & expertise mrsb!

I think we all need to realize that covid is not gone either - 4 friends just got it, believe a booster which will include the newest covid variant comes out next month.  

Nick I've only had prednisone and WinRho as treatment so I can't help you - but as mrsb said:  Good luck and keep us updated!

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

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1 year 5 months ago #73320 by ncanaday
Thank you for the article and I am going to submit both of them to my provider. He honestly has probably read them but hey, why not make sure? :) 

As far as Doptelet, I have not tried it but I think that was the next option after this next round of Rituxan. I think both my doctors are still not sure about it and so they want to give it more time before just prescribing it to me. Also, I can't remember and I can look it up, but is Doptelet another platelet stimulant? I don't have an issue with the production of platelets, it's the destruction I have an issue with so I know that is also a reason I haven't taken or been on certain medications. 

Anyway, I see the doctor on Tuesday, so I will for sure be sharing what I find out.

Are your numbers holding? Or are you having fluctuations? I was told, for me, the goal is to stay between 30 and 100 weekly, but as I shared I am bouncing consistently from 12, 28, 5, to 400, 500, 600, and even at one point up to1600 (this was after my first initial shot at a much higher dose) however since then, and the dose reduction, I have received the same dose every time. They are starting to get really concerned though about me clotting because of the spikes. 

Thank you again for the information, Talk Soon!

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