Ritux failed?

Hello, I was diagnosed in April, 2012. I am 3 weeks and 4 days post my first round of 4 weeks of Ritux. Last week I needed IVIG as my platelets had dropped to 11. Today's plt count was 74. During the 4 rounds of Ritux my plt count steadily went down. I have been told that it can take up to 2 months for the Ritux to work. My Hem doc basically told me the Ritux has failed and he really wants me to have a Splenectomy. I am totally against giving up my Spleen. Any input would be wonderful as I am quite frustrated and not sure where to go from here.

It's true, it can take up to 12 weeks for Rituxan, and a few members here have seen slow increases that started at the late end of that timeframe. Maybe before you do anything irreversible you can use IVIG as needed to see what happens after three months.
Erica

Hi Rose, I am pretty much in the same boat as you. 4 weeks past my last dose too and scheduled for another ivig for Thursday as my levels have continued to drop as well. I am not giving up hope yet nor is my doctor. I totally understand your frustration. I wish I could give you some hope but I will keep hoping for both of us! Good luck!

MY ritux failed also and I waited three months + and it still didn't "kick in" My spleen was already removed (thirty years ago) I have been on Nplate for a year and it seems to be working (I am cautiously optimistic as I've had so many failures in the past) Look at all the other options before having your spleen removed as someone said this is irreversable.
Just hang in there and look at ALL the options. Good Luck and hopefully lots of platelets.
My motto is "I have ITP it doesn't have me" Christine

Thank you all so much for the kind words and advice. I have no intention of giving up my Spleen despite the fact that my doctor seems to think this is the next step. I just started taking Papaya Leaf Extract today, having read about the success some have had on this site. I continue to think nothing but positive thoughts not only for myself but those who are traveling with me on this journey. Very grateful for this site and the kindness of the people who share here. Rose

Hi Erica, I am still struggling with low platelet counts despite going through Ritux. I had my last dose of Ritux on August 16th, so I am 6 weeks post and since then have had IVIG twice. Last week my count dropped to 17K, the next day I had IVIG and now today my count is 56K. To say the least I am frustrated with this number as it is likely I will drop next week again and likely the following week will need IVIG again. I have noticed that the drops in my counts are less, about 20-30K per week, which does give me hope. I appreciate hearing that there have been responses to Ritux even after 12 weeks, so that gives me hope. I am 6 months into this diagnosis and have no desire at all to give up my spleen, although my Hem doctor would be happy if I changed my mind. Thank you again for all the support and I will continue to update my progress. Rose

Hi Rose,

Sometimes the platelets do settle at a low number. But, the IVIG can also help for some people to bring up those numbers. There is another person on this site whose platelets stay low and she does fine and feels fine; no signs of bleeding. Try to stay positive and don't stress out too much as this can make then go down more. Remember that it is not just the numbers but the symptoms too.

Good luck to you.
Dee Dee

Hi Dee Dee, Thank you so much for your kind response and encouragement. I just got my plt count and it is 30K, 3 weeks post IVIG. Next week may push me down below a safe parameter, but I am happy that at least this week I do not need infusion. I agree with your advice about staying positive and work on this daily. Having this site to turn to has been such a help. I do notice that the only time I really feel symptoms is when I get down around 10K, so am feeling great right now. Thanks again for taking the time to respond to my post.

Have a great day.
Rose

Your Welcome Rose!

Thanks for your kind reply. It is good that your platelets are holding at 30K right now. This gives you a break and breather. We all need encouragement and to know that others have been in the same situation (I know that I have been there before). Just try to enjoy yourself right now and to continue to think positive.

Again, good luck to you!
Dee Dee

Hi Dee Dee, I continue to live with a positive attitude even though my unstable platelet count requires IVIG infusion about every 21 days. I have my blood drawn every week and by the third week I am usually in the low teens. I have a consultation with a new Hematologist next week (my relationship with my current Hem doc has just not developed and I am no longer comfortable with him ) and am hoping she will okay a second round of Ritux as I have heard of some success the second time around. Any suggestions as to possible alternative treatments would be highly appreciated. I have no desire to have a Splenectomy at this point. Thank you again for the positive support and have a great weekend.

Rose

Hi Rose,
I'm glad to hear that you are staying positive and trying to go on with your life. Since your platelets have been following a certain pattern, would your doctor agree to having your blood drawn every two weeks for a start? That is very stressful for you to have your blood drawn every week. This is just my suggestion--this is what I would want for myself.

Also, I was just reading the PDSA newsletter and they mentioned about certain medications bringing down our platelets counts. I know for me, this may have been the case (and my doctor also seems to think so). Do you take any certain medications that could possibly be on their list? I do agree with you that it might be worth a chance to try a second round of Rituxan just to see if it might work.

I also believe that our diet and rest is important in helping our platelets (and a little exercise, too ).

Good luck to you and keep us imformed on how you are doing. And, look, you've made it quite a few months already and your platelets are not below 10,000.

Dee Dee

Hello again Dee Dee. I like the idea of having my blood drawn every 2 weeks! As a matter of fact I have not looked at my results from this week (Monday). I am a Kaiser patient and have access to my medical record and generally with my hands shaking I check my results about 2 hours after my weekly blood draw. This week I took a stance with myself and decided not to look at my number knowing that if I am low I will get a call from the Nurse to set up an appointment for IVIG. No call meant my number must have been above 30K. I will take a look at the med list on the newsletter but can say up front that I only take vitamins and Tylenol occasionally. My consultation with the new Hematologist is in the morning and I am looking forward to having a conversation with her. My current doctor hardly gives me the time of day and I only see him every 4 months as he wrote a standing order for weekly blood draws and IVIG if my counts drop into the teens.
I will follow with an update as to how the consult went tomorrow. Thank you for reminding me that I have not dropped below 10K in many months. My blessings are great! Thank you so much for taking the time remind me! Rose

Hi Rose. I, too, had Kaiser for many years and do agree with you concerning their specialists. Sometimes they just don't spend much time with us or explain what's going on. This alone can make us upset because they are not communicating with us. But, overall, it does sound like you are getting good care. Try not to worry too much because I think you are doing good. It doesn't sound like the medications are a problem since you are not hardly taking any. For some people (like myself) this is sometimes the case.

Please keep us informed and let us know how your new doctor works out. Good luck to you! Dee Dee

Hello Dee Dee, My consult with the new Hematologist went even better than expected. After a bit of discomfort when she asked me why I decided to change doctors, to which I answered honestly and was candid about lack of communication, she seemed to get it. She is Chinese American and blends with Western medicine which is right up my alley. The very first thing she mentioned was stress and how it definitely plays a part in this diagnosis...first time I was asked anything about my personal life! We have decided to try Prednisone again as I was tapered quite rapidly and that was 8 months ago. She is against Ritux a second time around as I had no response and it is quite harsh. I am changing my diet totally and adding more exercise to the mix. I will continue to have my blood drawn weekly as my counts are too erratic to skip a week right now (I agree with this). I will see her in 2 weeks and am praying I will not need IVIG at the 21 day mark since I am starting on Prednisone again. Bottom line is I am really feeling good about this change. Always, always stay positive...no matter what.

I will update as this process goes on and see what my numbers are at. BTW she did recommend Aloe juice and adding sweet potato or yams to my daily diet. Thank you again Dee Dee. Rose

Hi Rose, It sounds like you now have a doctor who understands you better. My Hemo also mentioned stress as a cause of ITP and thinks that a lot of his patients relapse due to too much stress. I think the diet can only do you good; we all need to try and eat healthy. I've been trying to do that since I read the book Eat to Live. I do eat a lot of yams and try to eat salads during the week. And, like she mentioned, the exercise is really good for you--especially since you will be going back on Prednisone.

Good luck to you and here's wishing you high platelets. And, she may be right about the Rituxan--I've never tried it. Please keep us posted and let us know how you are doing
Dee Dee