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Levels dropping with Rituxan?

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13 years 2 months ago #26634 by ddinap@aol.com
Levels dropping with Rituxan? was created by ddinap@aol.com
Anyone had their levels go up, and then drop while on Rituxan? I have had 3 of the 4 rituxan treatments (going for #4 on tuesday). My levels had been increasing the whole time. They went from 100 when i started to 160 to 185. Today they were at 115. I know that is still high, but in the past when mine start to drop they drop quickly. I once went from 120 to 10 in 5 days.

I guess i was hoping to see them more level after 3 weeks of treatment. It surprised me that that dropped that much in a few days. The rituxan is kicking my ass, so I can't even let myself think that I am going through this hell and it is not going to work. I was so positive about it before I got my blood work today. My levels have been the only thing that has kept me going back each week. I have been so sick, with chemo like side effects.

Has this happened to anyone else? Has it ended up working in the long run? I have heard it can take up to a few weeks after the last treatment before you see the best results, I was just hoping that since it seemed to increase already that it woudl either stay level or keep going up.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 2 months ago #26643 by Sandi
Replied by Sandi on topic Levels dropping with Rituxan?
Rituxan probably hasn't kicked in yet, so your counts will continue to do their own thing.

My counts during Rituxan went something like this: Week 1 - 8k, week 2 - 11k, week 3 - 3k, week 4 - 150k. I hadn't used any other treatments, so it was shock going from 3 to 150. You never know what to expect.

I thought you were going to stop the treatments? It's not really the number of treatments that makes the difference it's the amount of time after the first one that does.
The following user(s) said Thank You: Rose
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13 years 2 months ago #26646 by ddinap@aol.com
Replied by ddinap@aol.com on topic Levels dropping with Rituxan?
wow, that is a huge jump to go up from 3 to 150! that is great! how long did it stay up for?

my levels were increasing, so i decided to continue with the treatments. i figured at least i was going through all that and it was doing something. had my levels dropped after week 2, i would have stopped, since i was not in good shape after the second treatment. the third one did not hit me as hard. i think my body is now getting more used to it. and at this point i only have 1 left, so i may as well just do it. my doctor said i could stop if i wanted to, but he recommended all 4. he said he would not give them to me again though in the future, as he has never seen anyone have these reactions to it. my hope is that this works and by the time it stops working there is another treatment option.

i really just hope this works and that i didn't go through all this for nothinng. it has been a very long few weeks for me of feeling sick and basically just being sedentary. my poor kids are bored to death. and i have gone from someone who used to run 5 miles a day every to, to someone who can barely get off the couch and is out of breath from cleaning the bathroom!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 2 months ago #26647 by Sandi
Replied by Sandi on topic Levels dropping with Rituxan?
My counts stayed up for 13 months.

It will get better. This is only a small portion of your life....if you'd had a surgery you'd need time to recover and would accept that. Think of this as the same thing.

Seriously, getting that last one in is not crucial. If you have been tapering Prednisone, that is probably the reason for most of the side effects. Those sound like typical withdrawal symptoms.
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13 years 2 months ago #26659 by Dean
Replied by Dean on topic Levels dropping with Rituxan?
I responded the same with Rituxan. Counts went up and down during and after the last treatment. I was slow to respond. Do not get discouraged!! Stay positive!! It can take several weeks after the last treatment before it can kick in. I have had two rounds of Rituxan. First lasted 16 months, second is going on 3 years now. Counts are holding between 160-220. Understand what you are going through!! Hang in there!!
The following user(s) said Thank You: Rose
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13 years 2 months ago #26664 by ddinap@aol.com
Replied by ddinap@aol.com on topic Levels dropping with Rituxan?
that is encouraging to hear! i can't let myself think it is not going to work! i just keep trying to stay positive!

my last treatment is tomorrow and i cant wait for it to be over!
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13 years 2 months ago #26683 by Dean
Replied by Dean on topic Levels dropping with Rituxan?

ddinap@aol.com wrote: that is encouraging to hear! i can't let myself think it is not going to work! i just keep trying to stay positive!

my last treatment is tomorrow and i cant wait for it to be over!


Good Luck!! Fingers crossed for you!!
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13 years 2 months ago #26702 by ddinap@aol.com
Replied by ddinap@aol.com on topic Levels dropping with Rituxan?
had my last treatmenet today! i am so glad it is over, and even if i get sick this week as well at least i know i dont have to go back for another next week! that is enough for me!

my platelets continue to drop. they were down to 70 today. they were 185 about a week ago, so they is a pretty steady drop. the dr had to up my prednisone from 10 to 20mg (again). trying to avoid the platlets dropping to 10 again and having to have an emergency IVIG. it is starting to feel like i am never going to get off prednisone. i have been on it since january 3rd! though i am thankful that at least it seems to work for me. i know there are a lot of people prednisone does nto work for.

either way, i am glad the rituxan is over. i am glad i made it through the 4 treatments, so at least i cna say i tried my best to make this work. it is in g-d's hands now!
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13 years 1 month ago #27212 by ddinap@aol.com
Replied by ddinap@aol.com on topic Levels dropping with Rituxan?
I am almost 3 weeks post Rituxan now and my counts were 180 today! They have been going up week by week as they have been dropping my prednisone. The doctor thinks the treatment worked and expects the levels to go up even higher in the weeks to come! I am so thrilled and I hope that it lasts for a long time! I am now down to 10mg prednisone and hoping to be off of it completely in the next few weeks!

Thank you to all for your info and support during my Rituxan treatments. It was hell to go through, but if it works for a while it will have all been worth it!
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13 years 1 month ago #27216 by Dean
Replied by Dean on topic Levels dropping with Rituxan?
Great to hear!!! Do not get discouraged if counts bounce around a bit though. Yeah, for getting off the Pred!!!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 1 month ago #27224 by Sandi
Replied by Sandi on topic Levels dropping with Rituxan?
Great news! I hope it lasts a long time for you!
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13 years 1 month ago #27419 by ddinap@aol.com
Replied by ddinap@aol.com on topic Levels dropping with Rituxan?
My levels went down to 115 today. My last count was about 180 (10 days ago). Is that normal? Or does it mean maybe the Retuxan did not work afterall?

Not exactly the news i was hoping for today! At least I got to have a stress free vacation without getting my blood drawn...
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13 years 1 month ago #27424 by Rose
Replied by Rose on topic Levels dropping with Rituxan?
I had my last treatment of Ritux almost 3 weeks ago (8/16/12)and so far my platelet count has not responded. Week one plt count was 94K (I received IVIG the week prior to the first Ritux dose), week 2; 41K, week 3; 32K, week 4 16K. During week 4 I recieved IVIG on Tuesday and Ritux dose #4 on Thursday. I did amazingly well with the treatment and suffered very few side affects. First week after Ritux plt count was 93K, second week 47K and today it is 11K. Needless to say I am scheduled for IVIG tomorrow. I was diagnosed 5 months ago and this pretty much has been my pattern with my platelets. Am I disappointed..yes..am I throwing in the towel and giving up my spleen..NO! It remains to be seen if the Ritux will kick in, but my attitude remains positive and I refuse to give up. Blessings to all of you for this site and the encouragement and help it provides.
Rose