Rituxan first treatment

You both are so kind and I appreciate all your knowledge and concern for a total stranger. She did respond to prednisone for about 8 months. It just didn't last. This steroid was put in the IV before the treatment started. Those counts of 234 were taken the day after she finished the first infusion. The second infusion not scheduled until Wednesday.

Yes Rob you are so right...easier said than done. I drive her nuts I think. My parents go to her appts with her. She lost her husband after only being married for 1 1/2 years back in June. It has been quite the year.

This is for children, but no reason to think adults would respond differently:

Haematologica. 2005 Feb;90(2):281-3.
Effect of a single dose of rituximab in chronic immune thrombocytopenic purpura in childhood.
Taube T, Schmid H, Reinhard H, von Stackelberg A, Overberg US.
Abstract
Twenty-two children with immune thrombocytopenic purpura (ITP) with long-lasting thrombocytopenia, adversely affecting their quality of life, were treated with a reduced rituximab regimen in order to eliminate B cells producing anti-platelet antibody. A single dose of rituximab resulted in a response rate similar to that reported for cases in which 4 doses of rituximab were used.
www.ncbi.nlm.nih.gov/pubmed/15710595

Wow! Thank you!

Mac:

She is going through a very rough time. I'm sorry to hear about her husband. It's possible that the stress from that triggered the ITP. You never know.

If her counts rose the day after the first infusion, then I'd be willing to bet that the steroids did it, not Rituxan. However, that might last a bit until Rituxan kicks in and it is possible to have a response after only one treatment. So, if they can't get the next infusion into her, I'd drop it like a hot potato and move on. Monitor for a while and if counts start dropping, come up with Plan B.

Hello,

They started the second infusion today. Her Dr. will not allow the rate to be raised today above 25 because he doesn't want to risk that reaction again. So...it is going to take at least two days to get the full amount into her. She did say that she felt so much better. The other side effects seemed to go away after about 2 days. Then she felt great. Her counts went up again from 234,000 last Wednesday to 299,000. He said he wanted to get another round in because he doesn't want a crash. I still think those pre steroids could be raising that count. Just keep praying for a good outcome! So far so good today.

I'm so glad everything is ok and thanks for checking in. Between your sister and Katie M., I'm about ready to have a stroke.

You are one of the kindest people I have ever met. You have such compassion for complete strangers. I pray that the uneventful day is a good sign. I have to admit I am glad the doctor did not try to up the medicine. That was just too scary to me. Maybe slow and steady does win the race??? Do you know if the fact that her body takes this medicine so slow puts her at an increased risk for the serum sickness??

No, I wouldn't think that the rate it is given would cause serum sickness. Serum sickness occurs because of a delayed hypersensitivity reaction to a serum which in the case of Rituxan, is a mouse gene. If a person has a sensitivity to it, the reaction will occur simply due to exposure to the drug.

Rituximab is an interesting drug, as it is a chimeric antibody. This means that it contains portions of both human and mouse antibodies mixed together. The first papers reporting on rituximab were published in 1994. The first looked at its creation, and the second reported on the phase I clinical trials of the drug.

speakingofresearch.com/2009/07/13/from-mouse-to-monkey-to-humans-the-story-of-rituximab/

Today, the monoclonal antibodies (MABs) pose one of the greatest challenges to the people responsible for creating and approving drug names. It's difficult to keep their names simple, informative, and unique, and the problem has led to their tongue-twisting, five- and six-syllable names. Understand how USAN bestows names, and the differences between adalimumab, infliximab, rituximab, and trastuzumab become crystal clear.

A brief review of monoclonal antibody nomenclature can help clinicians pronounce the names and determine the MAB's source and purpose.

All monoclonal antibodies and fragments end with the suffix -mab. Many of them are of animal origin, and this is an important safety factor because many products may cause source-specific antibodies to develop in patients. USAN clues clinicians about this potential through use of source identifiers that precede the -mab suffix stem (see Table 2 ). The general disease state subclasses are incorporated into the name by use of a code syllable. Additional subclasses will certainly be necessary, and USAN will add them as appropriate. More information about MAB nomenclature and that of other biologicalsis available on the USAN's Web site ( www.ama-assn.org/go/usan ).

As illustrated in Table 2 , infliximab is an immunomodulating chimeric monoclonal antibody, adalimumab is an immunomodulating humanized monoclonal antibody, rituximab is a chimeric monoclonal antibody, and trastuzumab is a humanized monoclonal antibody, with the last two agents used in tumors.

www.medscape.com/viewarticle/469843_2

Thank you for the information. I just worry about everything. I wasn't sure since she does have side effects of flu like symptoms for a couple days after. It went away and then she felt great. She does have those symptoms tonight already. No worse than last week. The dr and nurses both said it is a common side effect. I'm just trying to figure out what is a common side effect and when it too much or something worse.

Try not to worry about serum sickness. It's rare and most of the time, people fully recover after a few days. I was just unlucky.

If she does get it, she'll know right away. Joint pain is the most significant side effect, and it is horrible. I felt like every bone in my body was broken and it hits like a ton of bricks. It usually occurs between the 14th and 21st day after the first infusion. I think you're only on day 8 or 9?

Yes that is correct. We are only beginning week 2..... I pray each day is better. Thanks for keeping me sane during this process.

She probably has enough in her already to do whatever it's going to do. Like we said, studies show that one or two infusions at lower doses can be just as effective. Anything more is just old protocol that is more than likely overkill.

You'll be fine! Getting gray yet?

mac wrote: Hello,

They started the second infusion today. Her Dr. will not allow the rate to be raised today above 25 because he doesn't want to risk that reaction again. So...it is going to take at least two days to get the full amount into her. She did say that she felt so much better. The other side effects seemed to go away after about 2 days. Then she felt great. Her counts went up again from 234,000 last Wednesday to 299,000. He said he wanted to get another round in because he doesn't want a crash. I still think those pre steroids could be raising that count. Just keep praying for a good outcome! So far so good today.

Mac, I can hear Sandi's teeth grinding all the way from Pennsylvania (I'm in Minnesota). All I will say is that there is no need to rush through 4 treatments. I spent 4+ hours getting a low dose of rituxan today, and I cannot imagine spending multiple days over multiple weeks sitting in that chair while my platelet count is normal. It would be perfectly natural to take a week or two off and see what happens (I'm just saying....). FWIW, this is my second low dose rituxan treatment....the first was 7 years ago. No other treatments have been needed in the timeframe. I don't endorse making decisions based on anecdotal evidence, but there is (some) research out there that supports lower dosing.

mac wrote: You are one of the kindest people I have ever met. You have such compassion for complete strangers.

I could not agree more! This last month has been pretty tough, and without the support of people like Sandi and Rob I'm pretty sure I'd have had a mental breakdown by now!

It's so lovely to come on here and receive such brilliant advice and support that is so easy to relate too and understand. It gives me such a relief and puts my mind at ease. No doctor, hemo or family member could help me as much as you guys have! Thank you so much from the bottom of my heart!!!

Katie,

It is all Sandi. She was there to keep me from freaking out over my wife's ITP, and she is the one without whom this discussion group would fall apart. I'm just "PAYING IT FORWARD" as are dozens of others who participate frequently.

Thanks, guys. I don't think anything would fall apart without me though. Everyone that takes the time to post is contributing, and that's what keeps this place going!

I have had four nplate treatments. My platelets jumped to over 700000, but once off steroids they immediately dropped to 90000 on monday and down to 4000 today. When i was diagnosed they were at 13000 and i had so many bruises i looked like a truck ran me over and i had nose bleeds and other bleeding. I was feeling great this week and was convinced the nplate was working and expected platelets in the 50000 range so i was shocked when i got the results today. I have no symptoms at all. I feel betrayed by my body all over again. Im back on 100 mg of iv solu-medrol (steroids). I seem to react to that treatment but we will have to see. I am thrilled to have no symptoms it just seems weird when my numbers are so low. The doctor will start rituxan on monday and feels the nplate was not doing anything. I am torn since i only had four treatments and not close to full strength but i hate to waste more time on a useless treatment. I am going to england on march 30 for the indium test un case splenectomy becomes the final decision. I will not take out my spleen until i try treatment. I just don't know when you give up. I hate the steroids. They destroy my quality of life beyond recognition. I cannot work or exercise or be joyful or kind or see life as worth living. That cannot be my long term treatment.
Help!!!

Emily K:

Im really sorry to hear that the N-plate hasn't worked for you. Try to stay optimistic, there are many many more treatments out there though that may work for you. I've just had my third dose of Rituximab and I'm hoping to see some stable longer term results with it. I wouldn't give up yet, It's been very successful for a lot of people, however it can take time (4-12 weeks) before it starts to work. Be patient and positive.

I've also just started a treatment of eltrombopag because my counts were not budging from 0. My count was at 0 for two weeks before I started to show any symptoms! And when my symptoms started that's when they decided to start some alternative medications alongside the rituximab to see me over. My count has gone from
0-30 in the last week.

Eltrombopag can take up to 2 weeks to work but if you really don't like the steroids you could always ask your doctor if you could try it. It's pretty cheap in the UK, although I'm not sure about in the US or other countries. There are options out there: do research and be open minded. Remember a splenectomy is not a cure.

I hope this helps. Please keep your chin up and defiantly don't give up! Time, patience, positivity and determination will see you through! I hope the rituximab works for you!

Emily:

N-Plate was working, you just haven't been able to get stable yet. That takes time. It's completely normal for counts to jump up and drop again for the first few weeks. Your doctor has not given it nearly enough time. My jaw dropped to the floor. I don't think some of these doctors are understanding N-Plate very well. It is not a useless treatment. Your counts went up while using it! It is a maintenance drug, it is not supposed to cause normal, stable counts after just a few treatments.

Your body hasn't betrayed you; it's doing what it is supposed to do by protecting you from symptoms. That is a good thing. If you feel good and have no symptoms at low counts, that is the important thing...not the actual number.

Keep in mind that the Indium does not exactly predict splenectomy success if the destruction is shown to be in the spleen. You could also have production problems that are causing the low counts or, the liver can also take over destruction at one point. It can however, tell you that a splenectomy will not be successful if destruction is shown to be in the liver initially.

No one with ITP spends their life on steroids. Most people find a treatment that works with their lifestyle. We've all been where you are. Yes, it's frustrating but you are not alone. You need to pick one treatment and stick with it for a while. One at a time will give you a much better view of what is working and how well it is working.

I'd suggest a second opinion at this point....someone who knows what they are doing. It is much too soon to give up on treatments especially since you are seeing results.

Thanks for encouragement. I guess neither the doctor nor i felt the nplate was working given the dramatic drop in numbers that coincided with me being off steroids. They were up at 700,000 after 7 days of iv solu medrol, down to 90 as i tapered on oral prednisone and at 4,000 wheni was on nothing but nplate. I didnt sense and improvement and figure if the rituxan works that would be great and if not i can try nplate again or promacta. Is this a foolish plan. I had a second opinion, before the drop, and he agreed with the treatment plan and praised my doctor. I have one more doctor to see for another opinion.

I totally get the cons of spleen removal and have read all the great articles posted. Im going to England just see if it should be ruled out completely at any time. I want to keep my very healthy organs! I didnt even have a doctor before this nightmare started so I am in no surgery rush. Just trying to gain information.

My naturopath suggested i get tested for Van Willebrand disease and Bernard Soulier syndrome. Anyone been tested for those? They are described on the foundation for women and girls bleeding disorders website. Maybe those goes on the woman topics but reading the descriptions makes sense to me. Anyone just another avenue to follow.

I really appreciate the support. I was crushed friday and am trying to keep my chin up!

I will second what Sandi says about NPlate. It absolutely is too soon to say it has "failed" you.
It wouldn't be considered a failure unless the platelet count doesn't increase to a level sufficient to avoid clinically important bleeding after four weeks of therapy at the maximum weekly dose of 10 mcg/kg.
... Not simply after four weeks, period. Your MDs seem not to be reading the entirety of the prescribing information.

Since you've been having other therapies at the same time, there's no way to know what any one in particular is doing. It also isn't unusual to have some beginning instability from NPlate alone. It takes time to tweak a dose to the patient's exact needs.

I've been on NPlate since early October while trying to taper my lowish dose of prednisone to nothing. It's been a roller coaster. I've had a few single digit crashes; but on the whole, I've had a safe count far more often than not.

Splenectomy is your call, of course. Seems to me, though, that your doctors are much too eager to move you in that direction. It truly isn't yet time for that, if you'd rather exhaust medical treatments first.

Thank you. I will talk to the doctor on monday when i see him.

Emily:

People seem to be way too happy with those high numbers. 700,000 is not a good count with ITP. 50,000 to 90,000 is actually MUCH better.

Any treatment is considered to be working if counts go up. Whether or not they stay up is a matter of which drug you are using, how often, and how it is designed to work. With N-Plate, you have to keep using it for months or years until your doctor feels you could possibly be weaned off. Remissions do occur on that drug, but not right away.

Sandi i wrote a response but i don't see it! Anyway both me and my doctor were concerned about the high number, but dropped from 700,000 to 500,000 in three days then three days to 90,000 and then three days later to 7,000. It seemed that the soul medrol was the only thing keeping them up and when that ended so did my safe levels of platelets. My anxiety is back through the roof. After three new days on 100mg of iv soul medrol i found a bruise on my finger. No idea what to expect tomorrow at my blood test. My nurse today said (and i am not a religious person but it mad me smile) "we make plans and God laughs at us." That is how i feel. He is laughing heartily.

Midwest,
How many weeks before you started to see a more steady response from NPlate and were you on the maximum dose? Amazing how much we all have to learn on our own and so quickly.

Emily,
I went through the same concerns as you when I started my NPlate treatment as my counts did not change until the week 6 dose. My specialist had been advised that some people do not respond until between the Level 5 to Level 8 doses and that is what happened to me. At the time I was tapering down my Prednisone from 37.5mg and was also taking Cyclosporine when I started my NPlate. My weekly results then went as follows;
Wk 1. 4 count - L1 dose
Wk 2. 7 count - L2 dose
Wk 3. 3 count - L4 dose
Wk 4. 4 count - L6 dose
Wk 5. 5 count - L7 dose
Wk 6. 33 count - L8 dose (finally!)
Wk 7. 315 count - L8 dose
Wk 8. 56 count - L8 dose
Wk 9. 228 count - L8 dose
Wk 10. 512 count - no dose
Wk 11. 403 count - no dose
Wk 12. 128 count - L7 dose
Wk 13. 420 count - no dose
Wk 14. 604 count - no dose
Wk 15. 362 count - no dose
Wk 16. 263 count - no dose
Wk 17. 151 count - L6 dose

I then started to follow roughly the same cycle as weeks 13 to 17 for 3 consecutive periods after that (other than 1 slight overdose which took me to 1,084) until it was then decided at the 150 count not to re-dose me. That following week I had expected a sub-50 count but instead came in at 193 and then for whatever reason, everything went back to normal and I have stayed at 200+ since the 22/10/14 (you may write this date as 10/22/14). I did not make any changes to my diet, my lifestyle or anything so I cannot offer any explanation as to why this happened.

I am not sure what dosage level you were up to in your treatment but I agree with the others in that 4 weekly treatments would not seem enough to give the NPlate enough of a chance to work.
Best wishes
Robert

Emily:

I saw that response in another thread...not sure where. The problem right now is that you are in the middle of too many treatments to know what is working and for how long. Solumedrol IV's are not a common way to manage ITP.

EmilyK wrote: Midwest,
How many weeks before you started to see a more steady response from NPlate and were you on the maximum dose? Amazing how much we all have to learn on our own and so quickly.

I agree we need to learn everything we have the capability to absorb about this disease and its treatments.
I don't agree, though, that it has to happen so quickly that we have to be taking wild swings in the dark out of misplaced desperation. I could tell within just a couple of visits to this board that people aren't dropping like flies from ITP, not even from extremely low counts. I could see there are people for whom nothing at all works, and they're still here with us. That proves there is time to learn about all the treatments before deciding on one and time to test which ones will ultimately work best.

As for the NPlate... I haven't yet exceeded 3 mcg/kg. (Maximum is 10). Counts aren't stable yet. In fact, they've been mostly too high for the last 6 weeks; but I haven't had single digits since early January. Tapering the prednisone seems to be my main problem. As soon as I lower it just a bit, the count crashes. We've (doc and I) adopted a new plan to go extremely slowly with the taper to see if that works. Once I'm off it altogether, it should be easier to adjust the NPlate to achieve more stability. I'm very willing to wait it out.

Sending a big cyber hug to you. Hoping you come to a certain peace with this very soon.

Well said, Janet.

I don't agree, though, that it has to happen so quickly that we have to be taking wild swings in the dark out of misplaced desperation. I could tell within just a couple of visits to this board that people aren't dropping like flies from ITP, not even from extremely low counts.

Absolutely!
It may seem heartless to say "relax"...but 'frantic' doesn't help anything.
Most people can live quite well year after year with 'low counts'...and many of us do just that.



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