Rituxan desensitization

Thanks for the info Dru. Is 5 or 10mg of Pred a pretty typical dose during Rituxan treatments?

Oh wow. That is an impressive steroid response.

As for which row, most everyone that respond to Rituxan (~95%) is row 1. Similarly, most everyone that responds to steroids (~80%) is row 1. If you respond to both (and don't have a partial count response to Rituxan), that puts you in row 1. Note that, unfortunately, row combinations are possible.

I would guess that if you were to take a normal dose of IVIG, without anything else, it would last about two weeks. LOL, most everything that is weird in ITP goes on in row 1. Like, staying in remission with 1 tablet of Promacta per week, or remission through IVIG, or remission through WinRho.

Hal,
For me the dose of prednisone during Rituxan depends on my counts. I had been on 10 before Rituxan as it kept my counts between 30 and 90. I went to 5 after the first Rituxan whem my counts went up a bit. Im down to 2 1/2 now but really suffering from exhaustion and achy muscles.

The 1 time I took IVIG it lasted for 3 months. The other thing that raises my counts is when I get hemolytic anemia- my platlets go up 600-800k. It is the same action as WinRho

Dru

From personal experience I think that is far too fast a taper of your prednisolone, hence the aching muscles and tiredness. Your adrenals need time to cope with dose reductions. Here is an abridged version of the standard UK Guidelines.
Gradual withdrawal should be considered for people who have:
Received more than 3 weeks of corticosteroid treatment.
Received more than 40 mg prednisolone daily or equivalent for more than 1 week.
During withdrawal, the dose of oral corticosteroids may be reduced rapidly down to physiological doses (about 7.5 mg of prednisolone or equivalent) and reduced more slowly thereafter.
The problem has resolved and treatment has been given for only a few weeks.
Reduce by 2.5 mg every 3–4 days, down to 7.5 mg per day, then reduce more slowly, for example by 2.5 mg every week, fortnight, or month.
There is uncertainty about disease resolution and/or therapy has been given for many weeks.
Reduce by 2.5 mg every fortnight or month down to 7.5 mg per day, then reduce by 1 mg every month.

It took me 6 months to get from 7.5mg a day to 3mg a day.
Anne

Anne,
Thank you so much for this information. I was feeling like I was just being a wimp and needed to suck it up and go through feeling awful. Two weeks ago my counts were good at 91 and my doctor told me to take 10mg alternated with 0 every other day. I said no thanks to that so he said for me to just manage my own taper. I so wanted to get off this stuff that I did go too fast. I felt ok on 5mg so I am going back to that for 2 weeks.
I also wonder how the solumedrol I get every Monday with my Rituxan can affect the taper. Better to decrease the prednisone when I am not getting that anymore.

Here in the US there really arent any guidlines for steroid use or taper for ITP. I have had 3 hematologists and 3 different steroid dosages for treatment and taper.

dru wrote: Hal,
For me the dose of prednisone during Rituxan depends on my counts. I had been on 10 before Rituxan as it kept my counts between 30 and 90. I went to 5 after the first Rituxan whem my counts went up a bit. Im down to 2 1/2 now but really suffering from exhaustion and achy muscles.

Ok. Sounds like the dose of Pred with Rituxan should be whatever it takes to get one out of the danger zone, say above 30 or so.

The 1 time I took IVIG it lasted for 3 months. The other thing that raises my counts is when I get hemolytic anemia- my platlets go up 600-800k. It is the same action as WinRho

Oh my. You are one weird, errr ahh, I mean, one responsive patient. Hyper responsive really. A couple of things come to mind.
- Did you consider trying Promacta/Nplate instead of Rituxan this time? I have to wonder if one of those might be 'easier' logistically to keep you in remission.
- Have you considered some kind of maintenance treatment to keep you in remission? I dunno, maybe 10 mg of Pred for a few days every year. Or maybe 10mg of Dex for four days. One quarter of normal dose. A mini Dex pulse.

With those great steroid and IVIG responses, 12.5mg (the lowest dose) of Promacta may be too much when you come out of remission.

I agree I am weird and my hematologist thinks so too. The reason I never tried promacta or nplate is because of my hemolytic anemia. We are reluctant to do something that might set that off. Having both disorders it is better to treat by immune suppression. Luckily for me the hemolytic anemia is pretty responsive to steroids and Rituxan though not quite as good as a response as ITP.
As for a maintenance dose I am not sure. When I am in remission I see the hematologist every 2-3 months and so we can treat right away. Most often the first sign of a problem is a high platelet count of 450k or more.

Having my last Rituxan now and it is going fine. Platelets at 130k today. On 5mg prednisone and going to try 5 alternating with 2.5 starting next week.

Sounds like Rituxan and the desensitization protocol has done it's job once again. Got your ITP treatment card punched for two more years.

A question for you. Would you say you became more sensitive, less sensitive, or about the same sensitivity, to ITP drugs (steroids and IVIG) after your splenectomy? And, did you get some period of remission from the splenectomy?

I was re-reading about WinRho on Wiki. It is really odd that platelets don't get destroyed when red cells are being destroyed visa-vie Hemolytic Anemia or WinRho. It's almost like the immune system has a pecking order - that it has an order to what is destroyed first. Am I misunderstanding things? What is your take?

Hal,
I had my splenectomy for hemolytic anemia in 2000. I got a good 13 year remission from hemolytic anemia, but developed ITP in 2005. I never had an episode of ITP before then. If I had to do it again I would have the splenectomy , those 13 years remission were good. My hemolytic anemia is more difficult to treat. The steroids have worked better for hemolytic anemia since splenectomy.

I think the antibodies to platelets and those to red blood cells are specific so that is why platlets are not destroyed during hemolytic anemia. When the bone marrow is busy making lots of red blood cells in response to destuction, then alot of platelets are made too, but not destroyed because there are not antiplatelet anti bodies. My platelets have gone up to 800k during hemolytic anemia.

I did have both disorders at the same time 2 times. After treatment with steroids- Once the ITP got better and I was left with hemolytic anemia and once the other way around. Cant make sense of it!

Dru - do you remember Audi? She had both and every time she got her platelets up, red would drop and vice versa. She had the see-saw thing going too.

Hi Sandi
Yes I sure do remember Audi!
She really struggled with the hemolytic anemia. I remember her having that response like I do. My red cells have been high normal this whole relapse.
Audi had the best sense of humor and I remember her stories about things she did on high dose steroids.

Haha - we all had stories back then!

Hematologist appointment today, platelets at 336k-
3 weeks after last Rituxan. Down to 2.5 prednisone, still achy muscles, and fatigue, now some nerve pain where I had shingles last year-but no rash. Will start with 2.5 alternating with 0 the next week and see how it goes.