Dean and Winnifred - Rituxan Buddies

Okay, you two are off and running! Let's see how the counts go for you both (and anyone else starting Rituxan now)!

Rituxan was started on 8/7 with a count of 1k. Count on 8/9 was 19k. Count on 8/11 was back to 1k. IVIG was started on 8/11 with a second dose on 8/12. Count on 8/13 was 134k. Second Rituxan is this Fri with two more to follow. Wish I would have been writing all this stuff down!!. Time to start!!! Hard to keep track of it all mentally. Dr is talking about a Splenectomy if this does not keep counts up for awhile. Not ready for that.

Your rise in counts is probably due to IVIG, not Rituxan. The IVIG should be temporary though so a drop could occur. Keep us posted!

Had Winrho because count was 4 last test showed counts over 100 when I started Rituxan. I am supposed to get blood work before next week. So i'll know than my latest count.

Winrho can give me counts good anywhere from 1-3 months. If Rituxan works like it did last time my counts never dropped just continue'd to stay up!

Well, so far so good with treatment#2. Test dose started slow due to slight reaction last time. Steroid/benadryl was given to reduce reaction chances. Started around 9a with about 11/2hrs to go. Count was 229k today. Wed I started noticing some acne like stuff on my forehead did not think much of it, but Thr more started showing up. Possibly due to the IVIg I had on Mon/Tue. Dr prescribed a topical seteroid to apply. Took 4 tries to get IV started today. Nurses always comment on the garden hose veins I have. Think the veins are getting stubborn. Valves in the vein seem to be the problem.

If you also had steroids with your first Rituxan treatment then that could be causing the acne. It would be ironic then to treat it with topical steroid. Ellen is breaking out, too, from her high dose dexamethasone.

I have had the steroids before with no issues like that. I think it is from the IVIg. I suppose it can happen from anything at any given time.

Dean they gave me benadryl, ranitidine and tylenol because of my reaction the first time. I was still there quiet a few hours!

Count today is 96k. Down from 229k last Fri. Suppose the IVIg is wearing off. Next Rituxan treatment is Fri.

Well Dean your on your own now! I'm out totally.

Good note my counts are absolutely normal 243 I think he said!

I hope you have great success with Rituxan!

Count was 0k today. I had a few bruises and blood blisters in mouth that prompted me to have it checked. Platelet transfusion and IVIg were done. Dr does not want to do the last two Rituxan treatments and is talking about a Splenectomy. Meeting with Surgeon tomorrow to discuss this option. Not sure if I should give Rituxan more time or if it is not working for me any longer. Not liking the Splenectomy route.

Rituxan is a drug that doesn't fix over night! It can take weeks for it work! You should really finish the treatment protocol and do the waiting game.

Remember vaccines for splenectomy can not be given close to rituxan. You must wait a time period!


PS: stop getting platelet transfusions. They should be save for emergencies! Like life or death bleeding!

Dean:

Julia is right. The vaccines that you'd need prior to splenectomy are not effective while using Rituxan or for some time afterward. If you really need to get counts up while waiting for Rituxan to kick in, there is always IVIG or steroids. As for getting more Rituxan, there are studies that show that four infusions are not necessary....two might just do the trick, but it can take a few weeks. It's far too soon to determine success.

Sandi,

I went looking yesterday for the studies showing two treatments might be as good as four, but only found the studies using a higher dose (for most people) of 1000 mg on day 1 and day 15. Do you have links to other studies showing 2 doses at 375 mg/m2 to be effective?

Also, as I recall the waiting period for vaccines after Rituxan is 6-10 months. Is that correct? I have read that at six months the response to vaccines is still impaired, but I have not found a specific time after which response to vaccines becomes normal.

Ellen's hemotalogist ordered vaccines shortly after diagnosis... just in case. That really should be standard procedure.

Rob, you are right about the dose, but I'm wondering... if someone is responsive if it might work with even a smaller amount to get a response. When I went for my second round of Rituxan, I only had one infusion at the regular dose and counts went up and stayed there for the past 9 years. One infusion. I won't fully credit Rituxan for the long remission, but I will credit it for getting counts up in the first place. I don't know if there are any studies about that.

About the timing of vaccines....I just saw it the other day and don't remember where. I'm looking.

I don't agree about the vaccines after diagnosis, but I don't think we should even go there. All I'm going to say is that very, very few people have a splenectomy shortly after diagnosis and if they do, it's probably very premature, so what's the point? I know I tend to come off as anti-vaccine but that's not entirely true. There are many times that I do think they are necessary.

Sandi wrote: About the timing of vaccines....I just saw it the other day and don't remember where. I'm looking.

Still looking. Most of the articles state that timing of vaccines has not been studied, but I know there are some out there. Just saw the darn thing! Anyway, the point is that splenectomy, even a few weeks after Rituxan, could render the vaccines ineffective (and that is the plan that Dean's doctor suggested). I think we agree on that.

There may not be any proof that one or two doses is as good as four, but I haven't seen any evidence that 4 doses at 600 or 700 mg is any better than 1 dose at 100 mg.!

There is something I clearly don't understand about Rituxan. Since 100 mg is enough to wipe out all the CD20 B cells, and the effect lasts for months, then why on earth would anyone want to use a higher dose, and why would they use multiple doses? What do the doctors know that I am missing?