Restrictions while receiving Rituxan

Right, 45 minutes before infusion starts.

You know, I asked my doc if she had ever had anyone go into remission on receiving IVIG. She said yes, one. I dunno, that sounded pretty good to me...

When I refused to go on prednisone again my hematologist gave me WinRho - when I asked her why she didn't suggest IVIg she told me she had never had a patient go into remission on IVIg. I had one WinRho IV and have been in a "remission" since - "remission" being decent counts but lower than the norm with a few in the normal range thrown in.

Melinda, right. Best I can gather an IVIG remission is very rare. Doesn't it follow that my doc must have a lot of experience to have seen that? I can only hope all that experience has made her a better doctor.

Isn't WinRho one of the more risky treatments? Did your doc ever explain why she preferred treating you with WinRho over Rituxin?

Have you ever heard of 'Evidence-based medicine'? Seems like that is TOTALLY lacking in treatment of ITP!

Speaking of 'evidence-based medicine':

A remission 'while on' or 'after being on' IVIG is not at all the same as a remission 'resulting from' IVIG. Correlation does not imply causation. A certain percentage of cases are acute and will resolve on their own. IVIG is often used in the early treatment of ITP (either with critically low counts, or with inexperienced practitioners who overreact and resort to IVIG unnecessarily) and the IVIG is given credit as the 'cure' when ITP resolves on its own.

Melinda and Winifred (Julia) have both achieved remissions while on WinRho. Melinda, are there others?

It was 2002 when I refused to go on prednisone again and was given WinRho - it was a breeze and just the one IV did the trick. I had never heard of Rituxan back then.

I wouldn't say that just because your hematologist had 1 patient go into remission with IVIg means she has had a lot of experience - I'd say she had a lucky patient

Rob most don't really consider my below normal count a remission. My lab no longer tags it as low - interesting.

Melinda,

Just as "sneakers" are also "shoes," I tend to think of a "partial remission" as a "remission" nonetheless. I don't know if this is correct, as most research seems to use the terms "complete remission" and "partial remission," but not the general term "remission".

The expression "partial remission"(PR) is not consistently used, but most often it applies to counts at or above 50, though sometimes it is defined as low as 30, or simply high enough not to require additional treatment. Usually a study will define its terms, such as, "Partial remission of ITP was defined as a sustained platelet count of 50–150×109/L, associated with a twofold increase of platelet count during 4 consecutive weeks."

To further complicate things, the "R" in the expressions PR, CR, SR (partial, complete or sustained) can refer to "remission" or "response."

It can be very difficult to compare or to combine results of separate studies.

Winrho was my rescue treatment for years. Within 24 hours of getting the treatment my number would be above 100. Each time I get a different response sometimes only 3-4 weeks sometimes 3-4 months. Where I go does not either know of the new black box warning or they don't follow it. I'd be in and out approx. 1 hour. Was the treatment with the least amount of side effects for me. About 6-12 hours in I would get hematuria (blood in urine) that would settle down and i'd be good. As the years have gone on I've needed to take benadryl and tylenol for the 1st 24-48hrs because I'm sensitive to meds.

Rituxan was just starting to be used for ITP in 2002. Win-Rho was used often; that was before the Black Box warning.

Over the years, there seems to be a trend toward less treatment since the thinking has changed. Normal counts are not needed, safe counts are acceptable. If symptoms are not present, lower counts are not an emergency situation. Of course there are doctors who treat old school or panic when counts are down. That is where being an informed patient is beneficial.

I like the 'less treatment' path since all of the treatments have potential side effects that can be worse than the disorder itself.