Low dose Rituximab (Rituxan) research

Tamar, your point is well-taken, but it is a poor system where sometimes one is required to pay $30 to download an article. And in this modern day, one should not have to travel to a medical library to do research. There has got to be a better way! I wonder how www.haematologica.org manages to offer so many articles for free when other journals charge so much.

My husband is a librarian at a public library. He can get many articles through the library's subscriptions or through inter-library loan. You can make requests to most bigger public libraries online, and to all of them on the phone.
Erica

I have access to the full article. Much of it is about other autoimmune disorders. Success rate for ITP seems worse than I've seen quoted before with one study having a success rate of 44% and another just 31%. It's interesting that the different disorders react very differently to the drug.

Rob, don't forget these articles are not written for patients. I feel a bit differently about this than you do....I am happy when I can get a copy of the article AT ALL, without having to subscribe to the journal in which it's published.

Bloodjournal seems to have started putting out new full articles instead of abstracts. I get e-mail alerts with anything ITP related.

I had 4 doses of Rituxan 6 months ago during which my platelets didn't go above 30,000. Now my doctor has recommended trying Rituxan once every two months for up to the next two years. Does anyone else have any experience with this form of treatment?

If it were me I would ask the doctor to explain his thinking. I would ask if it is not correct that Rituxan takes out the B cells and they stay gone for at least 6 or 9 months. So if that doesn't work first time, why would it work with more of the drug?

I would also ask what the long term side effects are of using the drug over and over. He won't know as nobody has tried it.

Depending on his answers, I would either consider or reject the idea. Also depending on his answers, I would either remain his patient or find another doctor who is perhaps more experienced with ITP.

Kharys:

I am not a fan of that approach. Seems like too much toxicity for little to no result. That's 12 treatments in 2 years, right at the time when studies are showing that less Rituxan works as well as the standard dose. If the normal doses didn't work, it's unlikely that more treatments would.

Ellen got her first round of low-dose Rituxan yesterday and had a moderate reaction to it - mild fever, severe chills, nausea - in spite of being pre-medicated with Tylenol and Benadryl. They treated her reaction with Zofran, dexamethasone, and more Benadryl, and sent her home to sleep it off, She is fine now, other than feeling like she was hit by a truck!

The moral of the story is that some reactions are NOT dose-dependent.

Rob16 wrote: The moral of the story is that some reactions are NOT dose-dependent.

Is it really the moral? Maybe they would have been much worse with the higher dose... right?
I still think if less can work as well as more, we're better off with lower amounts of chemical toxicities in our systems, even if the immediate side effects aren't much unchanged.

I'm glad she's doing okay now. I'll be interested in her progress from here forward.

my son is doing great with the low does he is in remtion now ,hope for long this time .

Great news, Farida! I hope it lasts a long time.

6 years ago when my son got the itp , the all life it was upside down crying , talking to Sandy or email her , she was my support , i couldn't imagine that my son will graduate from high school and then graduate from the university, and 6 more months he will be in the medical school .he got accepted in one of the prestigious school.when i knew i was crying from the happiness and he was reminding me the day he told me sorry mom i can't do medical but i supported him , and battled together until the day i see him wearing the white coat , it's always a hope but we have to be strong day after day and when the number is going down be sure that something it 's going to work one day . good luck for everyone and keep praying for my son and for every family has itp member . God Bless America

Farida - this is all such wonderful news! I am so proud of both of you for hanging in there all that time! Congratulations to your son for his accomplishments; I'd love to see a picture of him one day in that white coat!

Today marks fifteen weeks since Ellen began low-dose Rituxan treatment. Her platelets peaked in the fifties, but reached a low of 29k yesterday. Her hematologist feels that Ellen did respond, but not a strong response, and feels that the next step, after some continued watchful-waiting, should be full dose Rituxan. I neither agree nor disagree with that approach, and I am curious what others here think.

I'm thinking why not skip Rituxan and try N-Plate. If low dose didn't work, I doubt full dose will and it seems like a waste of time, not to mention added toxicity.

Rob16 wrote: Today marks fifteen weeks since Ellen began low-dose Rituxan treatment. Her platelets peaked in the fifties, but reached a low of 29k yesterday. Her hematologist feels that Ellen did respond, but not a strong response, and feels that the next step, after some continued watchful-waiting, should be full dose Rituxan. I neither agree nor disagree with that approach, and I am curious what others here think.

Okay, since you asked for opinions....I think there's a lot of room between low-dose and "full dose". If "more rituxan" is the next step, it doesn't have to be such a drastic jump in dosage.

How often is Ellen getting a CBC? I ask because I got weekly CBCs for a while after having low dose rituxan, and my platelets were up and down a lot....If I'd gotten a count every 3 weeks instead of every week, I could've thought I was hanging in the 80s or the 40s. And....my count didn't get over 100K until (I think) 16-18 weeks after the end of the low dose tx. It then stayed over 100K for close to 3 years. Now I'm back in the 40s.

Is Ellen symptomatic?

Happy Thanksgiving, Tamar!

To answer your questions in reverse order, Ellen has never had any symptoms other than extensive bruising, until yesterday noticing some bleeding gums after brushing her teeth.

Ellen gets CBCs as she feels the need. If her counts are in the 20s or lower, then every week. 30s or 40s then every 2 weeks. Otherwise, only if she starts bruising. However, she has been trying to go weekly since the Rituxan to give her hematologist better feedback/data. Her counts have been steadily declining since they peaked in the 50s.

I don't think Ellen will soon start retreating with Rituxan - if that is her choice. She has an appointment with a gastroenterologist which will probably be followed by an endoscopy with biopsies, and she will have to get a dex pulse to get her platelets up for that, after which her counts will again start a gradual decline, unless the original Rituxan kicks in. So, it will be a while before her platelets get low enough to need to retreat.

Normally they count weeks from the start of Rituxan treatment, so you are saying you didn't break 100 until 20 weeks or more? That is encouraging. Or in the words of Jim Carey... so you're telling me there's a chance!

As far as the full-dose vs. low-dose question, her doctor follows research-based protocols only, and I was able to show her extensive research on low-dose protocol, so she agreed. She might try low-dose again instead of full-dose, but it would be futile to ask for a compromise dose. Gotta pick your battles!

Well, now that I have finished writing, it is no longer Thanksgiving in Atlanta, so Happy Black Friday, too, and thanks for your thoughts.

EDIT: I just realized that Ellen had a flu shot recently - after the Rituxan - and that may be affecting her counts. Yes, I know the vaccine was probably worthless, but she would have had to wear a mask all the time at work if she didn't get it.

Rob, I used to know this stuff by heart, but let me dig it up and see what the actual dates were. I'll post again soon. Of course there's hope! However, at 16+ weeks, there's really no telling if the rituxan finally boosted me over 100K, or if it was the PopTarts I was eating at the time....

Well, let's see if I can add my chart....it was longer than I remembered before I got over 100K.

PS, Happy December!

Nice chart, Tamar, except that you forgot to label the PopTarts. I will lay in a supply just in case.
Thanks for the encouragement!

Wow, has it been that long since Rituxan, Tamar? I can't believe it...time flies.

Rob16 wrote: Nice chart, Tamar, except that you forgot to label the PopTarts. I will lay in a supply just in case.
Thanks for the encouragement!

There is no research on PopTarts, but I think Kellogg's is missing a great marketing opportunity

You'll notice 2 things from my beeyoutiful chart:
1. I didn't follow any protocol; I had 2 tx of 200mg 3 weeks apart.
2. My platelets were all over the place, and that year was when it fully hit me how unreliable any one or two or three CBCs could be. If I'd gotten counts less or more frequently, my chart might have looked VERY different (especially if I'd gotten them less frequently and had happened to hit all high or all low counts). Right now my last 4-5 CBCs (over the timespan of about a year) have all been in the 38-52 range, but who's to say that in between my count wasn't significantly higher or lower?

That's what prompted my question about symptoms. That's all that matters to me...the more mystery bruises I have, the more likely I am to assume my count is down. And when I suspect my count is down, I'm just as likely to avoid a count as to get one.

I'm still kicking around the idea of another round of low dose rituxan...as much because it could keep MS at bay as because it might raise my platelet count (don't tell the insurance company that, though).

Sandi wrote: Wow, has it been that long since Rituxan, Tamar? I can't believe it...time flies.

Yeah, Sandi....almost 7 years. And I think my count was over 100K for about 3 of those years; maybe 4.

I haven't been here in a while, so I've been catching up. Rob I noticed you mentioned Ellen's new symptom was bleeding gums. When I had Rituxan I noticed some dormant type viruses got more active - and I believe that some gum disease is believed to be virus related, or at least immune system related (?) So my usually marvelous gums got a little softer and more bleed-y for a while (6 months or so?) and my hpv virus was acting up. A year after treatment things were back to normal.

I had to listen to the lecture from the dental hygiene person and didn't feel like explaining the whole thing about Rituxan...

I did not notice any change in colds or other illnesses post-Rituxan.
Erica

Tamar forgot to mention: strawberry and unfrosted.
Erica

hi Sandy , hi everyone
my son's count dropped down after 15 month of remission , Sandy i think you know him now , i see his picture with 2 other student
they are battling with itp and he mention his success story after he attended to medical school , sad again for him , he has a lot of exams and this ITP make his life hard .

Hi Farida,
I think your son and my wife were treated at about the same time with low-dose Rituxan. Ellen never did get a normal count, but she has not yet been low enough to require treatment. How low are your son's platelets? How bad are his symptoms? More and more the doctors are learning to treat according to the severity of symptoms, rather than according to the count. I am hoping he can avoid treatment, at least until he finishes his exams!

11 k , gum bleeding , bleeding under skin , doctor advice him to start cortisone pills 60 mg and tapper down till he start Rituximab ,
did your wife got the low dose or 375 mg .

Ellen got the low-dose 4 infusions x 100 mg Rituxan.

I think Ellen would repeat the same treatment. If it worked before there is a good chance it will work again.