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Rituximab 5 months 3 weeks ago #72279

  • JamieLea
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Hello all! It has been quite sometime since I have logged on. I hope you all are doing well. I have had ITP and managed to only treat during pregnancy (steroids/IVIG).  The time has come where my 30-40 platelet count has dove down to the 5-15 range.  I have been going in for IVIG fairly regularly and my hematologist has been pushing me to get Rituximab for about a year-and-a-half.  I told her I would do it and we are supposed to begin on Thursday.  I am worried and stressed and thinking I might be making a mistake.  Any advice/stories on your thoughts of this medicine would be greatly appreciated.  I am not sure where to go, but I really don’t wanna do this.  I am 39 and have had ITP since 2007.  Thanks! 

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Rituximab 5 months 3 weeks ago #72281

  • CindyL
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Hi Jamie.  I did Rituxan in 2011 and it worked well for me.  My count started rising with the first dose.  I had no issues with any of the infusions.  I was told to have someone with me for the first time, so my husband took the day off but I didn't need him.  Everyone is different and I think I am an odditity as far as Rituxan goes.  By the time my 4th treatment came around, I had normal numbers and thought I wouldn't be getting it but did.
I'm sure you'll get a lot of replies.  Good luck.

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Rituximab 5 months 3 weeks ago #72282

  • MelA
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I have not had Rituxan but a friend did - that was back when you were given 8 infusions - I think it was at least 10 years ago but may have been longer.  Her count has been good ever since and it even helped with her RA.

A man who came here & hasn't been back for a long time advised people to drink a lot of fluids.  But as I said, I have not had to use Rituxan so I know nothing about it.

What are your symptoms now that your count is in the 5-15k range?

Good luck to you - keep us posted!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Rituximab 5 months 3 weeks ago #72283

  • JamieLea
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Thanks for the reply back.  My only symptoms have ever been just bruises on my legs and more recently (once down in the 10’s) heavy periods for like 2 days, whereas before I didn’t have heavy periods at all).  I did see something about increase in water intake.  Your friends has had an amazing response.  I guess I wouldn’t mind getting this if it works for an extended amount of time; however, it is hard to know if I will even respond let alone for how long.  I hate to deplete my immune system for so long and have nothing to show for it.  Also, the side effects sound pretty scary.  

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Rituximab 5 months 3 weeks ago #72284

  • RR01
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If those are the only symptoms and no active bleeding then I dont think you have to worry I guess . Just my suggestion ...

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Rituximab 5 months 3 weeks ago #72285

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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You might want to ask about trying a TPO-RA drug before rituximab. 
I don't want to talk you out of anything, But since you asked for personal stories, I'll be honest and tell you my admittedly atypical response to Rituxan was not a good one.  My doctor encouraged me to try it about five years before I went finally through with it.  That first time, I felt so uneasy about it that I backed out of it on the day I found out insurance had approved it.  My doctor and his staff were baffled and annoyed with me, but my negative gut feeling was so strong that I just couldn't take the plunge.  Five years later, my then-treatment was going okay, but could have been better.  I set aside that gut feeling and went ahead with it.  I'll just say, that was a big mistake that I'll always regret.  I returned to NPlate and still take it now with reasonable results.

Rituxan isn't a drug to take lightly.  It's a strong cancer drug that hasn't been formally approved for use in ITP, even though it has come to be commonly used for that purpose.  Up to about 20% of people who take it for ITP can have a reaction called serum sickness, and it has even been known to trigger new autoimmune illness in some. 

I believe a person should feel hopeful and confident about the treatments she tries for ITP.  I wish you best of luck with whatever you ultimately decide.  

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Rituximab 5 months 3 weeks ago #72286

  • JJ
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In these covid times when there's a need for a functioning immune system, I wouldn't be doing rituximab if there were other options. As someone else said, why not try the TPOs first, Nplate or Promacta/Revolade.

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Rituximab 5 months 3 weeks ago #72287

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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I agree with JJ

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Rituximab 5 months 3 weeks ago #72288

  • JamieLea
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Thank you all for taking the time to respond to my question.  I feel like for some reason she wanted me to not do the TPO agents just yet for some reason. I held off on the treatment of Rituximab and we are meeting in person next Friday to discuss how I responded to last IVIG and a plan moving forward.  I just feel I would like to exhaust other options before Rit.  I agree with the immune system too and is the reason I have held her off this long — with Covid.   Thanks again all.  

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Rituximab 5 months 2 weeks ago #72293

  • MariLinTx
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  • Ret. RN/attorney, wife/mom/grandma diagnosed 2/1/22 with ITP. Fear has worn off as Doptelet is working; now I’m told I need Plavix b/c of a significantly blocked artery. I am so scared having ITP, CAD, uncontrollable BP, renal disease & mobility issues.
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They started me on this before Doptelet. I had no adverse reactions. It didn’t raise my count as much as IvG and steroids. 

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Rituximab 1 month 4 days ago #72587

  • sleev-les
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I did Rituxan last fall.  September and last infusion was the first week of October 2021.  I have been in remission since.  Last count was 3 weeks ago and 240.  I didn't have any adverse reactions.  I was tired at the end of each treatment, but they had me on Benadryl and Dex during the day so sure that is where my tiredness came from.   I would do it again if my numbers drop.  Hoping I still maintain remission for a long time, but we will sure see.  I'm 41.  I had asked about TPO's and my doc said that since I'm younger he didn't want me to start with those due to possible long term use effects.  

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Rituximab 3 weeks 3 days ago #72617

  • sleev-les
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Just to add to the Rituxan.  I thought something was off last Wednesday and had bruising at my insulin pump site on my arm.  Never bruise there.  Asked for bloodwork and I crashed to 21.  I was 2 weeks shy of 1 year remission.  Back on Prednisone and I hate this stuff.  Especially being diabetic on top of it  I have repeat labs tomorrow and scheduling to see doc.  I'm going to ask about Rituxan again since being off treatment for a year is better than always on something for me.  Just saying I would not hesitate to do it again.  I'm also making other changes in life (gym, eating better etc).  I feel that I may have crashed since I was sick about 6 weeks prior and wonder if the virus reactivated it.

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Rituximab 3 weeks 3 days ago #72618

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
  • Posts: 2021
  • Karma: 7
  • Thank you received: 575
sleev-les
So sorry to read that.
Over the 8 years I've had ITP my count always used to crash every time I had a viral infection even when I was taking treatments. 
Now it can't crash as it is rarely in double figures irrespective of meds. So far I've given up on Azathioprine, MMF, Romiplostin (twice) and Eltrombopag (twice) as I have lost response to them. 
About 6 yrs ago I  got kicked off the Fostamatinib trail after 6 months as failed to respond to it.
IVIg twice in last 8 months with no success and now Prednisolone failing to work at a dose under 20mg/day; a dose  I refuse point blank to take now. The side effects of high dose pred are truly unbearable. 
I am currently taking  5mg/day of Pred and on the PRN1008 trial, 6 weeks in and a count of 5 yesterday. Going to see my consultant Monday. I am prepared  to give it a bit longer but suspect I will end up getting kicked off this trial too. 

I'm not keen on Rituximab whilst Covid is still around but may well have to consider it soon. I have previously discussed it with haemo  where upon she told me it was highly unlikely to provide a permanent remission and that I would probably need top up doses at regular intervals.

I hope all goes well with appointment and that your counts go back up. 

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Rituximab 3 weeks 3 days ago #72620

  • sleev-les
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Thanks for the response.  I would do this once a year to avoid the other drugs without hesitation.  I feel normal and more confident when I get a time of remission, even if just a year.  At least I know when to be on the lookout if that is the case.  I'm going to talk to the doc after I get my next results and push for it.  I can't fight blood sugar when on prednisone and deal with the other side effects.  I've been shaking all day today.  Its crazy and for some reason this time I can't sleep at night.  Wasn't like that before.  

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Rituximab 3 weeks 2 days ago #72621

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
  • Posts: 2021
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Oh I understand that. I never sleep on Pred above 10mg. I am simultaneously hypermanic, completely exhausted and foul to everyone.
It must be a nightmare for you having type 1 diabetes  too. I've been on the wretched stuff for over 8 years now. I get my HbA1c done every 4 months. Thankfully it has remained within acceptable parameters throughout. 
Fingers crossed you are soon off it again.

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Rituximab 3 weeks 2 days ago #72624

  • sleev-les
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Me too.  I just had an A1C done and it was 5.9.  But dealing with the ITP and also diabetic retinopathy makes for a lot of doctors appointments.  Definitely focusing on better eating and gym again.  I'm down 8 pounds so far and goal will be 40ish in total to lose.  Hoping that helps, but time and patience will tell.  :)

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Rituximab 1 day 19 hours ago #72670

  • packh1@yahoo.com
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I have had great success with rituxin .The first remission lasted 15 years.The second time (currently) I have have been in remission for 3 years and am hoping it continues indefinitely.The side effects were minimal and did not last long.Good luck.
tricia50

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