4 rounds of Rituxan and 3 to go

I've had 4 rounds so far. Week 1 platelets 17000 week 2 21000 week 3 32000 now 25000. On week 3 the doctor added 3 more rounds for a total of 7. I was on a high dose of pred but now down to 5mgs. When I first started the pred my count went from 7000 to 23000 then back to 16000 and 17000. I go back to the doctor on Friday for recount and round 5, but this doesn't seem to be working for me??? Don't know what to do or does it take a long time to work..Just dropping 7000 points??

It can take 4-12 weeks (occasionally longer) for Rituxan to start working. There is no evidence that giving you more will make it work more or faster.
Erica

Thank you, I'm new to ITP and can use all the guidance...

7 rounds of Rituxan may be overkill. As Erica said, it can take time to work and usually counts don't go up until after 4 rounds are over.

7 rounds is a bit of overkill!! 4 rounds is the first start, then is is a wait and see game. You have not had enough time yet to see how the first 4 rounds is going to work. As Erica said, it can take up to 12 weeks after the treatment before you will know how you are responding.

8 rounds total now, count on Friday was 59,000. I asked about why so many, doctor said that he doesn't want me to have to on meds for the rest of my life. He is hoping this will not be chronic.

I don't understand why 8 rounds will keep you from having to be on meds for the rest of your life. I've never heard that 8 will give a life-long remission and 4 won't.

Amber, your doctor isn't following the recommended dosage for Rituxin. My concern is that he is putting you at risk for side effects for no sensible reason. ITP is a fairly rare disease and most doctors haven't had much experience with it. So we all have to inform ourselves the best that we can so we can make good decisions.

I've had Rituxin and have read about it. I'm no expert but what I've read in the Blood Journal is there is some debate over the 4 doses. It seems most of the B cells are taken out in the first round, so 4 rounds may not be necessary. Nothing I've ever heard of say that more that 4 is useful or safe. Dr Sweetenham, a recognized expert in Rituxin therapy writes about it on his site.

www.research1st.com/2011/10/30/rituximab-sweetenham/

Rituxin is made by Genetech, their website has the safety information. You may not want to read it since you've already had the 8 rounds, its pretty frightening. But before you ever have Rituxin again, you might want to study it.

Good news is: the side effects are rare, most do well so you'll likely be fine. Hopefully it will put you in to a long long remission! good luck!

No way I would even consider having any more than 4 low dose rituxan treatments. When all evidence points to that being enough, the possibility of contracting PML just isn't worth the risk of using more. Here's a nice report about PML and rituxan.

bloodjournal.hematologylibrary.org/content/113/20/4834.long

It is possible that many cases of PML go unreported which means that we really have no idea how many cases there have been.

8 rounds the first time!!!!! What kind of Dr are you seeing??? 8 rounds vs 4 is NOT going to necessarily stop you from having to do more treatments. You may go into remission, but I am shocked you were given 8 rounds. I hope you respond and do not have any bad side effects.

When I first got diagnosis the ER referred me to an oncologist hematologist, that was right across the street from the hospital. I have had 5 treatments so far, I don't have internet at the house so I have to get on here when I'm at work. Really don't know what to do, should I not do the rest of the treatments? I have the 6th one tomorrow morning.... But don't go back to see the doctor until 4 weeks? The infusion clinic is at the hospital and the do blood work before hand to see where my count is at, last count was 59..

Can you ask to have a conversation with your doctor?
Erica

I'm sure I can call and leave a message for him to call me?

Another thing you can do is cancel the infusion appt. until you've made a decision. You aren't obligated to show up for the appointment. You can just say you can't make it, or want to talk to the doctor, or you need a second opinion, whatever. You can take your time. You don't have to follow their schedule or their treatments. You are at a good count, 59 is great! so theres no rush.

I was assigned to a doctor by the hospital ER who was domineering and intimidated me terribly. After a few months I couldn't take it but I was afraid to tell him I wanted to leave. So I just canceled my appt. Now, that was the frightened way to do it. A better way would have been just say I need a second opinion before I go further with these treatments. But both ways work.

So I then called another hematologist who turned out to be great. He was friendly with the first one and it was no problem to switch. They are so busy anyway. I'm so glad I switched doctors, the new one has been a pleasure to work with.

I'm the USA, don't know where you are, perhaps the health system works differently. But wherever you still have a right to take your time and make your own decisions when you are ready. Its tough standing up to doctors, but with ITP it seems we all have had to do it. good luck!

The common treatment for Rituxin is 4 treatments. I do not believe any of us are Dr's but we have been through this and know a little bit about treatments and what to expect. Doubling the number of Rituxin treatments right away, is not going to give you any better of a chance of response. I feel it will put you at a greater risk of side effects. I agree with poseymint.

I agree with dean and poseymint, and maybe meanwhile you could schedule a second opinion. I've heard of ITP patients getting FEWER than 4 infusions - one or two - but never more. At minimum this suggests the doctor is not well educated about treating ITP.
Erica

i may be starting rituxan for the first time next week. i was told by my dr that is was one infusion per week for 4 weeks. he also told me that i woudl need to stay on a lmed-low dose of prednisone until at least 2 weeks after the last treatment, as it could take up to a month to really know if it is working. everything i have researched seems to say 4 treatments is sufficient at one time. though i know people do have the treatments again a year or so later if the remission ends...

good luck and let me know how it turns out.

are you having any bad side effects of the rituxan? i have never done it before and am a little anxious about it.

So far I have not had any side effects.

I have no insurance and this doctor is working with me on that. I don't have the money to get a second opinion, I had to get help with the first payment with this doctor. I feel like I am stuck in a rock and a hard place.

Man - health insurance in the US is a whole other discussion. It's horrible to be in a position of making choices about your health based on your pocketbook - I'm sorry you have to do that. I've been there - it sucks and it's not fair.

That said, I agree wholeheartedly (even more so now that we know about the lack of insurance) with my fellow posters that you should cancel the next infusions. Even if you "had" to do 8 total, there would be no reason you'd have to do them all this close together. Postponing them will not be detrimental, since you've had 4 (or 5?) already, and I'd imagine your b-cells are pretty much wiped out.

Also, prednisone is FAR less expensive out of pocket than rituxan..... I'm curious as to what the doctors biling plan is for you, and why he would go into a treatment plan like this knowing that you were uninsured and it'd be difficult to pay. Prednisone works for lots of people and it is often under $10 for a month of it.

Good luck girl.

PS: economically, you may want to try dexamethasone as another steroid option. I also had only slight jumps in numbers from prednisone, but the dexamethasone worked for me, even if it was for a short time.

And dexamethasone was only about $10.

Doctors often do not take cost into consideration, or they talk about "payment plans" which is really no better. Dexamethasone is cheap, and it could work.

But right now cancel that next infusion - that'd be my suggestion.

The company is suppose to be paying for the Rituxan, and I order the Pred from work.

Yeah, the whole insurance thing SUCKS!!! My treatments were around 8k per treatment.

I'm at 59k for the 4 rounds, but like I said the company is paying for it. But I still get the bills before they pay for it so I know how much it is. I sure hope they don't back out of paying for it. I'll be up POOP CREEK!!

The SPOC paid for mine too but they didn't pay for the cost of the infusion by the doctors office. That ended up being around 2 grand.

I'd love to say that insurance pays for my Promacta....they do....but only after I pay over $300.00 a month for insurance coverage and the $80.00 a month co-pay for it. Thanks to the 'Affordable Care Act', my co-pay increased 33% last January and the insurance coverage premium increased as well. Sure it's better than paying the $6k a month full cost for Promacta...but it isn't free...it isn't even cheap.

On the bright side, Promacta was $9k a month when I started on it.

weirdjack wrote: I'd love to say that insurance pays for my Promacta....they do....but only after I pay over $300.00 a month for insurance coverage and the $80.00 a month co-pay for it. Thanks to the 'Affordable Care Act', my co-pay increased 33% last January and the insurance coverage premium increased as well. Sure it's better than paying the $6k a month full cost for Promacta...but it isn't free...it isn't even cheap.

On the bright side, Promacta was $9k a month when I started on it.

The cost of this stuff is insane!!!

The sad part of getting expensive treatment is that at one point in your life it can all catch up with you. And, I feel (cost wise) it is only going to get worse!! I would probably re-think my treatment if I felt like it was going to affect my life in many different ways: Like losing my house due to medical expenses. I guess maybe up to $400 a month--but when it goes beyond that--I just don't know.

Kittie--I do agree with what you said earlier. Try the inexpensive treatment first.

Well the good news for Promacta and Nplate is; In the USA it is 20 years from 'patent' to 'generic', which normally includes the clinical trial years. The average time from FDA approval for general use until generic is 7-12 years, so we should see far less expensive generic forms available in 5-10 years.
For example; When I first started taking Imitrex for migraines, it cost me $25 per 50mg pill ($150 for 6 of them). I used them sparingly and cut them in half to make them last longer. But today, the same thing in generic form only costs me an $8 co-pay for 20 of the 100mg pills. As soon as the patent expired, generics came out, and the price plummeted.

Note: I don't begrudge GSK for charging out the wazoo for Promacta right now. It's a niche drug for an orphan disease....and they are a drug company in business to make money, they are not Unicef.
Realistically, there simply are not a lot of folks with ITP to begin with, and even fewer who use Promacta to treat it. So it isn't as though GSK is selling a metric ton of the stuff every day.

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