Rituximab how long before it starts to work?

[Thewakey31]

My husband had his last (4th) treatment on the 23rd December but still no change in his platelets. We've read it can take up to 12 weeks to hopefully work but is that from the 1st or the 4th treatment? Any advice gratefully received. Thank you.

[nazmeen]

Hi. I had my last Ritaxamub 31st December 2015. It took about a month for platelets to rise and at my last blood count which was a month ago it was 348. So hopefully yours husbands will rise. Good luck.

[Thewakey31 in reply to nazmeen]

Hello, thank you for replying. Fingers crossed my husband starts responding as the iivg is only lasting 10 days so he has 4 days of misery with blood blisters in his mouth. Pleased to hear it's worked well for you ! Happy New Year!

[prudencepayes]

Hi. I had my last rituximab treatment on 6th December. I was told to expect a possible wait of 3 months or even more for a response. Half way through the 4 week course my platelets had fallen to 8 so I was given another IVIG which pushed my count up to 87. When I was tested 3 weeks after the IVIG (and 2 weeks after the last rituximab dose) my platelets were still 47 even though I had a heavy cold. I had never previously stayed in double figures for more than 18 days after an IVIG so I'm wondering if that was the rituximab starting to have some effect.

I agree that the literature doesn't make it very clear whether it's 3 months from the 1st infusion or 3 months from the last. I'm also not sure whether to expect a gradual creeping up of the count or a sudden dramatic increase.

I have noticed more symptoms in the last few days ( a few blood blisters and bruises and quite a lot of blood in my nose) so I think they may be dipping again, but I have my next count tomorrow so I'll keep you posted. Could you also let me know how your husband gets on ? It would be good to compare progress. Trying to stay positive and look to the future.

[Thewakey31 in reply to prudencepayes]

Thank you so much for reply & I hope you count has gone up. Your account is very similar to my husbands as the symptoms seem to be getting worst 10 days after IVIG and count dropped down to 0 half way through the Rituximab. The lack of information is frustrating as our specialist has given us nothing & it's only through the Internet we have a bit of an understanding. Thank you again & let us know how's it going ! Bye

[prudencepayes in reply to Thewakey31]

I've had another blood test today and I'm happy to report that my count has risen to 68. It is 4 weeks since my final rituximab treatment. I'm very encouraged by that as I'm not taking any medication and my last IVIG was 5 weeks ago. My consultant is happy that the Rituximab is having a balancing effect on my immune system and feels that it's possible the numbers could continue to rise. My next check is in 3 weeks.

[Thewakey31 in reply to prudencepayes]

Super result & long may it continue!! Fingers crossed my husband has some good news soon. Thank you for coming back to us. Bye

[4ladylove in reply to prudencepayes]

Where you told to go right to the ER If ever any bleeding? My daughter was told this 5yrs ago so If any signs of blood she goes right in.

[prudencepayes in reply to 4ladylove]

I have only been once, when I had a nosebleed that wouldn't stop. They packed my nose and then eventually cauterised it. I don't go for minor bleeding like blood in the nose or a short nosebleed. I think you learn to understand your body and what is 'normal' bleeding or dangerous bleeding. But it is probably best to go if yoyu are in any doubt. My haematologist has told me to ring for an urgent appointment if it feels like my platelets are dropping to low figures or go straight to emergency for serious bleeding. I'm in the UK and we have a free healthcare system and don't use insurance so that may influence the recommendations.

[Zaff in reply to prudencepayes]

I have a supply of blood test forms and if concerned I can get a blood test with quick results, I can also ring for an urgent appointment if I get very severe symptoms. I'm in the UK too

[Zaff in reply to prudencepayes]

my count went down after my second dose too, I think its fairly common

[Monty55555]

Hi,

I am on the ITP train as well, I have had rituximab, they do say it can take some time, for me it didn't work, but don't let that worry you everyone is different and I hope it works for your husband. I know what it's like having blood blisters it's horrible. I hope you had a nice Christmas and new year Tom

[Thewakey31 in reply to Monty55555]

Hello Tom, thank you for posting. My husband said he can deal with the bruising etc but the blood blisters in his mouth & throat are painful & uncomfortable. Happy New Year !

[AnthonyHeard Administrator ITP Support Association]

I've had Rituximab treatment twice, first time in 2010 and then again in 2013. I got about 2 and a half years remission on both occasions and my platelets went up within about a week to 10 days of my first dosage each time. But the problem is that we are all different, there is no definite response time but it can take anything up to 3 months from the first dosage albeit you can't really be totally specific. If you wish to read about my ITP story right through from my diagnosis in 2006 through all the various treatment I've had upto date you can check it out at anthonyheard.simplesite.com. It covers both of my Rituximab experiences.

[Thewakey31 in reply to AnthonyHeard]

Thank you Anthony, we certainly will take a look. I think the specialist worried us as she seemed to be surprised that his platelets haven't responded as yet. We have found the forum & ITP Support really helpful. Thank you!

[8616927]

It's probably a little early for large changes. Getting weekly blood tests will show what's going on. It catches up eventually at least it did with me. Altho my Dr had Promacta ready if it did not work. Thankfully it did. Hope the count changes soon.

[Thewakey31 in reply to 8616927]

Thank you, specialist has discussed a back plan if the Ritxuimab does work so we are in the dark !

[GlendaInIowa]

Mine shot up about 2-3 weeks after the last treatment. Hang in there!

[Thewakey31 in reply to GlendaInIowa]

Thank you ! Fingers crossed !

[ITPAffecty]

For me it takes one to 2 weeks to start increasing. But i never too it more than for 2 weeks as it's very costly in India. Want to try atleast for 3 months and see if my count could go up but it's too costly to afford . My highest count is 80k till date but without any medicine its always below 20k.

[Thewakey31 in reply to ITPAffecty]

Thank you for responding!

[ITPAffecty in reply to ITPAffecty]

I am sorry, I read 'Rituximab' as 'Revolade'(becoz only Revolade works for me so that name will be wandering in my mind) and replied as above. I actually took 4 doses of Rituximab 4 yrs back and it was of no use, not even single digit rise in my counts so stopped. All these ITP medicines work differently for each so wish you get success with that.

[Zaff]

It took a couple of months for me to get an improvement after my last treatment, since then (March last year) my platelet levels have slowly increased to just over 200

[Thewakey31 in reply to Zaff]

That's an excellent result, we are still holding out for a rise in his count. Thank you

[Sripsg]

Hi, the following combination of natural and over the counter helped me get out of ITP in weeks.

Vitamin B12 5000 mcg

amazon.com/Nature-Made-Maxi...

Folic acid 800 mcg

amazon.com/Natures-Bounty-F...

Indian Herbal Medicine (have a pinch of it every morning with a little butter)

indiamart.com/jayaindian-me...

dir.indiamart.com/search.mp...

Note: I am not a doctor and do not take any responsibility on the actual effects of the above medicines, the recommendation is based on personal experience.

[Thewakey31 in reply to Sripsg]

Thank you for your comments we will certainly keep it in mind as a backup plan !

[SufferingTeen84]

Yes, like others have said, it took a month for me for everything to boost up and work! Been in remission for around a year since then!

Praying it works for your husband really soon too!

[Thewakey31 in reply to SufferingTeen84]

That's super news about your count, sadly we had his bloods done last week and still only on 5. His specialist is disappointed & has mentioned starting on other treatments if no really change by mid Feb. Still keeping fingers crossed !!