Cytoxan

I was diagnosed with ITP in May 2018 and have had the following treatments, Rituxan, IVIg, 85mg of prednisone, Pomacta, N-Plate shot, Splenectomy, Danazol and I'm currently taking Tavalisse. My counts have gone as low as 0 on three occasions I have been below 10,000 about 30 times since being diagnosed. I have had about 30 platelet transfusions as well. I currently have about 40 bruises on my legs, arms and torso. I have blood blisters and bruises in my mouth. And, for the past three weeks, I have on and off nose bleeds. My hematologist recently told me that what I have is refractory ITP and there is a chance, I will be dealing with this for the rest of my life. Needless to say, I'm feeling very discouraged and depressed. I feel hopeless because none of the treatments seem to be working. I feel like I can't go out in public because the number of bruises I have all over my body. My doctor did mention trying cytoxin and I was wondering if any of you have tried this treatment and if so, what are the side effects and did it work for you?
Thank you in advance for any kind of clarity you can help me with as I try to find a treatment that my body actually responds to.

What is your platelet count now?

My platelet count was 17,000 as of Monday. I feel as though it's probably lower with the blood blisters in my mouth and increased bruising.

Yeah, not a good count. I don't know what to tell you as I was fortunate enough to have only had prednisone for almost 4 years after diagnosis in 1989 and then WinRho in 2002.

Hope you can find something that will help raise that count. Sorry the splenectomy didn't work.

This is the PDSA's info on chemotherapy
pdsa.org/chemotherapy.html

Sounds like it's been a really rough year. You've tried a lot of treatments. Does your hematologist say Cytoxan is next in the pipeline for you? Have you considered Avatrombopag, Rozanolixizumab, PRN1008 or various other chemos?

I'd say the main thing to do is weigh the side effects and toxicity of the drugs with the potential benefits. Also, if you can, get an inkling about what types of treatments feel better to you. I do realize nothing so far has worked, but were there any treatments that had more side effects or any that felt like they strengthened you at all?

I have been treated with Rituximab, Cytoxan, Ofatumumab and many other drugs. Unfortunately, none of the chemos eased the ITP long-term, but they could work wonders for you.

How long have you been taking Tavalisse?

I found this on this site and may be of help, don't know...
pdsa.org/discussion-group/7-treatment-general/30247-another-year-and-another-new-drug-velcade.html#65541

How long did you try Nplate and Promacta for?

I have been on and off NPlate for at least 8 months. I just stopped NPlate again 2 weeks ago because it was not bringing my counts up, but instead they were either maintaining around 15,000 or going below 10,000. At the beginning of April, I started Promacta, which didn't work at all. After my splenectomy, I started Promacta and it ended up making things worse. My counts went down and I had transfusions 6 week in a row because my counts were below 10,000.

tleeparker, the problem with Cytoxan is that for all those that have tried it here on PDSA forum and responded well, also responded well to Rituxan - and vice versa. And, Cytoxan responders also responded strongly to steroids (thus were row 1 in my ITP treatments table). Based on that, I wouldn't expect you to respond to Cytoxan since you didn't respond to Rituxan.
bottools.com/Hal/ItpTypes.html

Let me guess. You haven't had Nplate along with Tavalisse?
The reason why I say this. I think the manufacturer is covering their behind and recommending no other drug be taken with Tavalisse. But, don't really know for sure. The problem with their limitation, as I see it, is that there are 4 ITP antibodies but Tavalisse is only effective for one of them (row 4). Thus, if someone has more than one antibody working against them (eg row 1 and row 4 in my table) Tavalisse alone will never work.

There are a couple additional treatment things I can suggest too. But since you are on Tavalisse now, I'm interested in your answer to my Tavalisse plus Nplate question first.

Double checking. Is it safe to say that when you've taken Nplate in the past, the dose has been a '10' dose? And with Promacta. The dose has been 75mg?

Cytoxan or cyclophosphamide is a heavy duty chemo drug with horrible side effects including hair loss, nausea, mouth sores, neutropenia and the rest. Better to try a less destructive immunosuppressant first I'd have thought. In the UK many haematologists like mycophenolate for ITP although azathioprine is also used (and is cheaper).