Rituxin Worked, so far. Now what?

I was diagnosed with ITP 2 months ago after I had my gallbladder out because of gallstones. I was on Prednasone, then Dexamethasone while beginning treatments. I had a terrible reaction to the IVIG treatments and, actually, had to go back into the hospital. After I got out, I began the Rituxin treatments. I had a bad reaction to the first treatment, and we had to slow it down, but I made it through. The next 3 treatments were much better, and my platelets were in the normal range after 2 weeks of the treatment! It has been 4 weeks since my last treatment and 3 weeks since my last dexamethasone pill, and my platelets are holding in the 400,000s.

My question is, what happens, next? What is your experience with the Rituxin treatment working long-term? Should I expect my platelets to drop, again soon, or will this work long-term? Also, should I get a medical ID bracelet, even though my platelets are in the normal range? I feel like I'm in this waiting game, always looking for bruises and red dots. It's hard to relax, but maybe, over time, I will be able to. Thanks for any advice you can give.

Amanda:

Rituxan can cause long-term remissions. The average is a year, but some people get much longer than that. Your counts have responded very well, so there is no reason to think that they will drop soon.

This is the time to relax and enjoy. Go back to normal life and try not to stress over it. If counts drop, you'll deal with it.

Thanks for the good advice. I will try to just relax and not worry about it.

It can take several weeks after the last treatment before results can be seen. Your response is great!!! Platelet Party!!!! I doubt your count will stay at that level, so do not get discouraged when they drop. It is normal. My response was slow. I had just over 11/2 years of remission with my first Rituxin trearment. Second treatment is going on over 21/2 years. Staying positive is one of the best things we can do with this Crap!! Excessive Stress, either physical or mental has a detrimental effect on optimal function of the immune system. I stressed out alot when first diagnosed, it is normal. So relax, you will be fine. I know this is easier said than done, but try not to stress out over your counts rising or dropping. When they rise, GREAT!!!. If they fall, stay positive, you will deal with it just fine. ITP is quite the "Rollercoaster" ride!! I was diagnosed almost 9 years ago and the first few years, it was all I thought about. Rarely do I think about my ITP now. My wife asks me if I feel like my counts are low sometimes, depending on how I am acting. My response, I do not know and do not care. If my count does decide to drop again, I am sure I will care a little more. But for now I am going with the I do not care attitude.

Nice numbers Amanda!
Enjoy them! My first remission from Rituxan lasted 4.5 years. I started bruising again last spring, and, yep, my counts were down again. I was treated again with Rituxan and have been in remission for 8 months so far. I saw my hemo last week my platelets were 168k. My next appointment is in a year.

They say that if you have an early response to Retuxan, as you (and I) did, then you should have a good long remission.

Wishing you well!

Sandi:

In June 2010, I had 4 treatments of Retuxin (once a wk). It did not raise my platelets. They were around 20k after treatment. I had an IVIG the previuos week, and on high doses of predisone and high doses of antibotics for H-pylori. Also, had a bone marrow biospy during the Retuxin treatments. I don't know if all the other treatments going on caused the Retuxin not to work.

Was wondering if it is safe to consider having Retuxin again to see if it would work. Could it be that since I've already tried it that is not going to work for me.

What are your thoughts on it?

My platelets are less than 10k for the past 8 months. They did get to 22k in Jan for a day or so.

I've had nose bleeds that last 3 days and will go away. This has happened a couple times this month. I get very tired and and afraid when I have this bleeding.

I have not had any treatments since Nov. 22, 2011 - IVIG which did not bring platelets up. I've taken papaya leaf extract which has not worked for me.

However, I am thinking that my body might be getting use to the low platelets. Could this be?

Elly:

I've read that if Rituxan does not work the first time, it most likely will not work a second time. I don't think the other treatments you had hurt the chances of it working.

Some people can handle low counts for various reasons. I am not suggesting that you not treat because of that. You need to do what you are comfortable with. Have you tried the TPO's?

my son will get his second dose of rituxan , can he eat while he is receiving the medicine , i forgot to ask the doctor

farida wrote: my son will get his second dose of rituxan , can he eat while he is receiving the medicine , i forgot to ask the doctor

Yes he can. That won't be a problem.

my son's count today is 717k , he was treated in the hospital 10 days ago from 4k platelets and 3 dose of sylemdrol , and on perdnisone now , 30 mg , he will receive the second doz today , but he has no spleen as well , i hope he will get the 100 mg of rituxamb , im at work ,he refused me to be with him , so sad he dropped his class for the last quarter in his second year of the college ,

Farida:

Have you and your son thought about counseling? ITP can be difficult to handle, but life can go on around it. You've both been really sad about it for a few years now, and I feel bad that you can't get to the acceptance point. Your letting it control your life and you shouldn't.

I really hope he gets a remission this time! I have my fingers crossed.

my son is depressing , dropped the last quarter in uci, he is crying sometimes, but he stopped playing basketball ,talking to his friends, even watching tv , even talking to his friends ,
he feel guilty that he is making our life unhappy ,

He should talk to someone, Farida. That doesn't sound good.

He defiantly should talk to someone! I went through the same thing. I thought I could get over it on my own, but it just kept getting worse. Your son is displaying classic signs of depression. Please tell him he is not alone and not to feel guilty about ANYTHING!!!!

he went to see the doctor and wrote medicine for him , we supported him me and my husband, his brother as well but im warry that he can not get over it , i want to see him happy boy as before , so did you take any medication ?

Yes, I am taking an anti-depressant called Celexa. Supposed to be one of the milder SSRI's Oh I thought the same. I did not think a little pill could make me feel better and bring me back again. I felt embarrassed to have to rely on that pill. I thought people would see me as WEAK!! An anti-depressant is no different than any other kind of medication that millions of people have to take to feel better every day, whether it be for Physical or Mental health. He may not get over the depression, but the medication will help. You and the rest of his family are going to have to be patient, understanding and help him through this. I think back on my first bout with depression and I NEVER want to go through that again. I understand what he is going through. Tell him he is not alone. Millions of people suffer from depression. Keep in touch.

He may need a follow-up visit with that doctor. I'm sure you are doing all you can, but sometimes people need more than family can give.

he is better now , i understand his feeling , it wan not easy for him to dropped his class for the spring this is the main reason for his sadness , but he is going to England next month for summer course which i m sure he will be back to his study very soon, i wish rituxin works for him so he can have a hope that something worked ,we do everything for him, im sure he is a strong young man and he will get over it , i see a lot of improvement , thank you for all your support,

Great!

I had four weekly Rituxan treatments five months ago, and so far, so good. Im glad because that treatment was no picnic.

Dean, dont be embarrassed, I went through a pretty bad stint of depression afterwards. Its alot better now, but the first couple of months after the treatment wasnt pretty. Now, whether it was the drugs or psychological, who knows.
Ill tell you this, if it didnt stop, I was going to talk to my Dr about it. Because it was that bad.

I hear ya Don. When I finally went in for the depression and the medication kicked in, I wonderd why I waited so long!! I was amazed with what that little pill did for me.

how long it takes for this medicen to kicked in?

farida wrote: how long it takes for this medicen to kicked in?

The Rituxin was slow to respond for me. At first I thought it was not going to work. It took several weeks after the last treatment before counts rose above 150k, which is medically considered the low end. Platelet count bounced around alot. As for the depression medication, it took a few weeks for it to kick in. I was Amazed with how it brought me back!!!

i was asking about the depression medicine , but thank you for the information , wish me luck , today is his second dose of rituxin , it should be the third , he got 100 mg first time infusion it was in the hospital , but his doctor recommended to give him 375 mg dose and forgot about the 100 mg was given in the hospital , his antibodies level is very high , may be this is the reason , i have nothing to do , i have to wait and pray for him,

last week count was 717k after selemdrol two days and prednison after he left the hospital , down to 20mg and count today is 525k , how can i find out if he responsed to rituxin or not ,

Farida, you have to just wait until the effects of the various drugs he's had have work off. And Rituxan can take several weeks to work so you have time.

Rituxin is a strange beast.
When I had it, my count went from 39K to 188K immediately after the first treatment, then dropped to 131K after the second, then climbed steadily back to 185K during the following two treatments.

Dont get discouraged with the numbers, as Ann said, it can take a few weeks for the count to level off.

Farida,
Im still new to the ITP and what's going on, but anti-depression med I have been taking since about 01 or 02. In the Army they put me on Paxil for a different reason and it did not work for that. I went back a couple weeks later and told my PC I liked it. I didn't get as mad as normaly would. The little things didnt bother me. My wife would call them Paxil moments. She would have to get after the kid. She can tell when I miss a couple days. At 42 im on the max dose 80mg I think. Once and a while I get tired of taking meds and try and stop...Dont. In Iraq and on missions in the Army I wouldnt take it, didnt think it would be a bad think to be a little angry than all kissy kissy running from a sniper. Ive tried a lot of other ones and Paxil has alway been the best for me. My side effect, It messes with the sex, For a while in the beginning you may have very vivid dreams that you may not be sure if it real or not. Drinking... you will do and say things that you dont remember and you wont want to. It's not good. I dont drink at all any more. Paxil is a great med.
Something else, remembering when I was young and the littlest things felt like the world was coming to an end. Girlfriend broke up with you, Got in an accident and someone got hurt, your cat dies. Every thing hurts at that age. suicide looks so easy to fix a problem. Sorry to bring it up.
Neil

Hey Neil. Sounds like we have been walking in similar shoes! I have been on 20mg of Celexa for several years. Got tired of it and did not get a refill as I was feeling better, so I thought I did not need it any longer. Bad idea!! Symptoms came back, not as bad as the first time but I was going down that road again. Never really considered suicide, but felt Worthless!!! I recently talked with a 70yr old lady that was at the end of her rope and thought ending it would be easier. She had a plan. I shared my experience with depression and that ending it is not the solution!!! She said she has drug resistant clinical depression. She would be fine for awhile, then the medication would stop working.

Dean - you have to taper off of Celexa. Some doctors will tell you it's not nhecessary, but I found that it most definitely was. It took me 4 years to get off of it. I realized I wasn't in any real hurry, but wanted to get back to actually feeling again.

I tried to stop cold turkey and had so many withdrawal symptoms I was a mess.