Newbie here and response to Rituxan

Hello all,
I'm so glad I found this board. In February of this year I was diagnosed with ITP. First option of treatment I was put on 80 mg. of Prednisone for 2 weeks. Thank goodness no side effects but it didn't work. My platelet count was 9,000. (I've never had any bleeding or problems)My next form of treatment was Rituxan. I just ended my 4th treatment at the end of last month. I did not have any problems taking the Rituxan other than the Benadryl they give you left me totally wiped out the day of the treatment.
Week 1 44,000
Week 2 49,000
Week 3 70,000
Week 4 60,000
I was so disappointed when my doctor told me my platelets were 60,000. Has anyone experienced
fluctuation of platelets during treatment? Is it normal for this to happen? Can platelets actually increase over a period of time after having the treatment?

Don't give up on Rituxan yet, it can take 4-12 weeks to get the full effect. Also some members have had a slight but significant rise in platelets, maybe that's what you are seeing - if you hold steady above 50k that can be very live-able.

Week 3 to week 4 is not a big difference, I've heard that the accuracy of counts can be as much as plus or minus 10k. Let's see what happens over the next month.
Erica

Yes, your counts could still increase. Even if they don't, you seem to be holding at a fairly safe count. 50,000 is above treatment level. I know the goal always seems to be 'normal' counts, but sometimes with ITP, safe counts are acceptable.

These numbers are quite good and may well improve further over the coming weeks.

Hey when you started out with 9,000 platelets I was thrilled with the response. Of course these numbers were during the treatment. I just never expected that the platelets could go down after a treatment. They had been steadily improving each week and then after the final week they went from 70,000 to 60,000. I'm still grateful. Like Sandi mentioned, it would be great to have normal counts but a liveable count is just fine. Hoping and praying the platelets stay at a safe range. I will go back to the doctor in 2 weeks for another test and will actually not see him until the end of this month.

Platelets fluctuate constantly due to constant production and destruction. It is normal to have ups and downs during treatments.

I went back to the doctor today. All I had to do was get a bloodtest. After the bloodwork I told the girl that I wanted my results of the platelets. She told me they couldn't do that. I was shocked. She then told me to go back to the examining area and talk to the nurse which I did and I finally got the results after my doctor had seen them first. As I mentioned on a previous post my platelets had dropped 10,000 after the 4th treatment. 2 weeks later (which is today) they went up 6,000. I'm now at 66,000. I'm wondering if they will steadily increase over time? If not I'll take 66,000 anyday. It might just be to early to tell. I did have the pleasure today to speak to a very nice man at the doctors office and we both have something in common, it's called "ITP"

This is like the opposite of what happens with me. I get my blood tests done at my GP a few days before i attend my Hemo Clinic so usually i tell the Consultant what my counts are.

Be patient. ITP is a "Rollercoaster" ride!! It can take several weeks after the last treatment before results can be seen. Counts can fluctuate during and after treatment. My counts fluctuated during and after treatment. My response was slow. Have had two treatments. First one lasted 16 months, second is over 21/2 years!!

what is the dose of the infusion, my son's doctor gave him 100mg the first infusion , last week and he said he might giving him tomorrow 375 mg , i got confused , is there anybody have the answer for that

There are two ways of giving Rituxan. The 100mg dose will be the low dose option. Some studies have shown that for ITP 100mg is enough and gives the same results as using the higher dose, and with less chance of side effects.

Here's two reports about it..

www.haematologica.org/content/92/12/1695.full

www.haematologica.org/content/93/6/930.full

Diagnosed in 2002 with platelets at 9 and only symptoms were a few bruises. I had my first 4 Rituxan infussions in 2003. It took about a month for my platelets to go up but they went over 50 and we settled for that. Checked off and on but they stayed close to 50 for five years. Had another Rituxan infussion in 2008 (4)and platelets immediately went over 50 and have stayed at least over 35 until May, 2012. They were at 18. Last week I had my first of four infussions of Rituxan. I'm hopeful that Rituxan will once again keep me in a safe range. I hope it's encouraging that Rituxan has kept me in remission.

Hi Alice,
Please let us know how your treatments are going. You and so many others I have seen on here give me much hope that Rituxan will help me. As I mentioned in an earlier post that I just found out I had ITP this past February. Prednisone did nothing, so the next line of treatment was Rituxan. Started with 9,000 platelets
After 1st treatment 44,000
2nd treatment 49,000
3rd treatment 70,000
4th treatment 60,000
Went back two weeks later and my platelets were 66,000. Went back another 2 weeks and saw my doctor today and they were 165,000. He said he would see me in a month and if everything is good then we will start spacing out doctor appointments. I just hope and pray that everything will level out and I can stop being so frantic about this. This has done a job on my nerves the past 3 months, things will get better.

Kim, you are responding just fine to Rituxin. I had similar response to my treatments. Understand the havoc it plaed on your nerves. It will get better. There will still be ups and downs though.

Kim - it's time to relax. Usually a response like that will last a while. No reason to be frantic; ITP can be managable. You're doing great!

Sandi I haven't got there yet. I have to stop worrying about the numbers. I visited my hematologist today and my platelets went down. A month ago they were 165, today 109. Will this be common for platelets to fluctuate so after treatment? My last treatment was 4/20/12. As usual my doctor was not worried. He thinks they will level off between 100-150,000. Naturally the panic comes in thinking "oh my gosh they are dropping again. He is pleased with the Rituxan treatment. Now here is the surprising part, I asked him about the anxiety I had been suffering and what he would do? He was so sweet. I shared with him that for over a month I thought I had a cold, my internist said I had allergies and I have been having constant head pressure which this is what upsets and agitates me the most. No symptoms of allergies. He said if I were you I would have a CT scan done and you need to talk to someone. He said don't go to a psychiatrist they will only want to prescribe a pill, see a therapist instead, they will get down to what is actually causing this. As I was leaving they scheduled an appointment for a CT scan which I was surprised that they do right there at their office. This will be done next week and if everything checks out you know they will say it's anxiety. I want to feel like myself again.

It sounds like this doctor was a winner for you!
Erica

Kim - the only thing I can say about the numbers game is: if they drop, what is the worst thing that will happen?

You'll have to make a treatment decision. Is that so horrible? Not fun, no, but not earth-shattering.

Your absolutely right.

Be patient! ITP is not an incurable disease.We need be careful of our diet and lifestyle in the same time. By the way, who else did use human thrombopoietin? How about the effect? Thanks!

Delta your absolutely right. When I found out about the ITP this past February I changed my diet completely. I already wanted to because I had gained weight and I wanted to get it off. Well since then I have dropped 20 lbs and the thing is my blood pressure has never been this good. Even though I dropped 20 lbs I still have 19 more to go. So basically I'm 19 lbs heavier and the blood pressure is better. Last time I went to the doctor it was 122/70. Diet and lifestyle mean everything.

Those of you who tried Rituxan...did your insurance cover the treatments? If so, what type of insurance do you have? (PPO/HMO) I really want to try it, but my co-payment is 7k$ which I can't even come close to affording. I tried going through the co-pay assistance, and not sure if my doctor dropped the ball (they insist they sent off the paperwork), but never got any response. Anyways..my husband can switch to a HMO come October, just curious if it's better at covering the cost of the treatment.

Hi Charlotte,
My husbands company is self-insured and they did pay for the treatment. We had to pay $3,000 out of our pocket (thank heavens for savings), once we paid the 3,000 dollars then any other doctor bills that come in will be 100% paid.

charlottem005 wrote: Those of you who tried Rituxan...did your insurance cover the treatments? If so, what type of insurance do you have? (PPO/HMO) I really want to try it, but my co-payment is 7k$ which I can't even come close to affording. I tried going through the co-pay assistance, and not sure if my doctor dropped the ball (they insist they sent off the paperwork), but never got any response. Anyways..my husband can switch to a HMO come October, just curious if it's better at covering the cost of the treatment.

My first 4 treatments were covered. 16 months later I had another Rituxin treatment. The day before the last treatment I received a letter from my insurance, explaining that the treatments were NOT COVERED!!! I was FURIOUS!!! 3 appeals did no good. Wound up writing a check for 8k!!! That pretty much put us in the hurt box for awhile!!! The insurance companys Physician reviwer did not feel it was medically necessary to have the treatment!!! My thought, I am paying $500+ a month for coverage and who in the He** are they to decide what is medically necessary for me. If my Dr. suggests a treatment and I agree, then the insurance should be covering it!!! As a co-worker told me once, "they work for me"!!!!! I never did look, but I doubt it specifically says Rituxin is not a necessary treatment. I am assuming the 7k is your deductible and not a co-pay. That is a nasty deductible. I have Bluecross Blueshield.

The first time I had Rituxan, my insurance refused to pay. We appealed, they denied. I then went through SPOC and they paid for everything except the dcotrs fee to administer the infusions.

I switched insurance companies, and the new insurance paid the next time I needed it.

It all depends on your insurance company.