!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

How long after Rituxan to See results?

More
15 years 8 months ago #4703 by MDgal
I am 3 weeks post and results still not great as I taper prednisone. I want to give this the maximum wait before exploring other treatment options

Pre Rituxan 15 mg kept me around 65K. We tried to go down to 10 mg for a week and I dropped to 17K the day before my first Rituxan infusion

Rituxan Week 1: 46K on 15 mg pred
Rituxan Week 2: 41K on 15 mg pred
Rituxan Week 3: 24K on 15 mg pred
Rituxan Week 4: 31K on 15 mg pred (blood btest was done 2 weeks after my last infusion)

Doctor told me to taper to 10 mg since I can't take the pred side effects any longer. My count this week dropped to 15K :dry: on 10mg.

Should I give the Rituxan much longer to work? (Dr is already wanting to schedule Winhro or Splenectomy. I want to wait a little longer. I have no bleeding problems except the bruises that pop up at random on my legs)

"With man this is impossible, but not with God; all things are possible with God." - Matthew 19:26

Please Log in or Create an account to join the conversation.

More
15 years 8 months ago #4705 by Bunnie
Replied by Bunnie on topic Re: How long after Rituxan to See results?
I haven't done Rituxan, but the posts seem to indicate it can take several weeks for it to kick in. You might consider the boost that Winrho could give you for the short term before going for the spleenectomy.

Winrho bumps me into the high 100's or low 200's, and lasts for 6-10 weeks before I drop back to into the 30's. In the beginning, they did 2 steriods and benadryl with the infusion and it took about 2 hours in the office, and then a 3 hour nap when I got home (the benadryl in the iv is potent). The steriods did a number on my blood sugars for a day and half, so I wasn't real perky until they were out of my system. When I didn't have any reactions to the first treatment, we cut the steroids in half the next infusion and then phased out all pre-treats as I continued not to have reactions. I'm in the office 20 minutes now, but do need to take it easy the rest of the day or I have a low grade fever and chills. I just schedule for the last appt on a Friday.

"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra

Please Log in or Create an account to join the conversation.

More
15 years 8 months ago #4828 by MDgal
Did the winrho make you anaemic? The drug diverts the spleen's attention to the red blood cells and it starts destroying them short term and stops attacking the platelets.

"With man this is impossible, but not with God; all things are possible with God." - Matthew 19:26

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 8 months ago #4865 by Sandi
I had five weekly Win-Rho treatments years ago and didn't have any red cell problems, even with having them so close together. I was new then, and should not have had so many since the first one didn't work at all. I sure know better now. I think it's worth a shot - it seems to do the trick for some people.

Please Log in or Create an account to join the conversation.

More
15 years 8 months ago #4867 by tigereyes
Replied by tigereyes on topic Re:How long after Rituxan to See results?
Rituxan took 12 weeks the first time to see any type of improvement for me the first time, 2 time a little longer, 3rd time I didnt have a response to it. Winrho didnt work for and it didnt make me anemic either. Id actually go back up to 15mg and try tapering down 1 mg ever 2 weeks. I noticed that my counts would do a quick drop but rebound after a week if i didnt taper again. I assume its my body adjusting. Its worth a shot IMO

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

Please Log in or Create an account to join the conversation.

More
15 years 8 months ago #4874 by jtx
tigereyes, did that pred taper put you in remission? Or are you still tapering?

Please Log in or Create an account to join the conversation.

More
15 years 8 months ago #4996 by MDgal
Okay, I am 5 weeks post the last Rituxan infusion and platelets today are at 16K on 10 mg prednisone. So my Hematologist is anxious to try the next thing. He wants me to decide if I want Imuran :ohmy: (I hear this stuff is toxic) or Splenectomy :dry: . Those 2 don't sound great but oh well. He said I could take Winhro to buy time while I think or up the prednisone but the prednisone is dealing with my joints so badly I can't go up anymore.

Right now, I am looking out my window and just hoping and praying for a solution. Don't know which option to pick right now :huh: .

"With man this is impossible, but not with God; all things are possible with God." - Matthew 19:26

Please Log in or Create an account to join the conversation.

More
15 years 8 months ago #4997 by eklein
Replied by eklein on topic Re:How long after Rituxan to See results?
If WinRho works for you, it's no more 'buying time' than the other drugs, a lot of people, some right here, have used WinRho for years with much success. You might need it every 6 weeks or every few months, but if you don't get anemic you can probably use it for years.

At conference Dr. Liebman said (I know I use that phrase a lot but he said a lot of good stuff) that success with Rituxan tends to predict success with Imuran. He didn't say anything about the reverse, whether failure with Rituxan predicts anything regarding Imuran.

There are a few people here who reported that Rituxan may have kicked in after a couple of months but you're right, it's not looking good.
And what about nPlate and Promacta?
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

Please Log in or Create an account to join the conversation.

More
15 years 8 months ago #5000 by MDgal
Thanks Erica. I just may try the Winhro. Just concerned about any wierd side effects.

Nplate and Promacta stimulate the bone marrow to make more platelets. My hematologist said that's not going to help me any since my body is destroying the good platelets anyway.

I could go up on the steriods for a better count but the side effects are not worth it. Maybe I should try black bean soup like someone had suggested :) . I really don't know what to do but have to tell my Hem tomorrow how I want to proceed

"With man this is impossible, but not with God; all things are possible with God." - Matthew 19:26

Please Log in or Create an account to join the conversation.

More
15 years 8 months ago #5001 by eklein
Replied by eklein on topic Re:How long after Rituxan to See results?
For sure try black bean soup, that is pretty squarely in the 'can't hurt' category. There has been a lot of buzz in recent years about strawberry unfrosted poptarts as well.

Sandi, I think you have good info on the nplate/Promacta thing? Even though we are destroying good platelets, it's been found that boosting platelet production has helped many ITP patients. So you might want another opinon on that one, it sounds a little like your doctor isn't up to date on it. We pretty much all here have bodies destroying our good platelets. But some are responding well to the platelet production boosters.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 8 months ago #5005 by Sandi
Yeah, that sounds a bit strange to me too. Many people with ITP successfully use Promacta or N-Plate and they all have destruction problems too. It i considered a valid ITP treatment.

Of the four, I'd consider Win-Rho the lesser of the evils.

I don't have any info on it. I don't do as much research as I used to.

Please Log in or Create an account to join the conversation.

More
15 years 8 months ago #5008 by hairball01
Replied by hairball01 on topic Re: How long after Rituxan to See results?
I just viewed the CD's from the 2009 PDSA Conf. There are no 'black-and-white' answers. BUT there is a lot of info on the CD's, particularly CD#3 with Drs. Bussel and Liebman as they discuss the pros and cons of various treatment regimens. The CD set is $50 but well worth the cost. I wish this type of data had been available 6 years ago when I was first diagnosed.

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 8 months ago #5015 by Sandi
ITP has come a very long way in the past 6 years. I've seen more discoveries in the last four years than I have since my diagnosis in 1998.

Please Log in or Create an account to join the conversation.

You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.