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Rituxan and Steroids - scared

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13 years 11 months ago - 13 years 11 months ago #21974 by Skadi
Rituxan and Steroids - scared was created by Skadi
I am new to this site and ITP.

I started Rituxin right away when he felt that the steroids and IVIG were not helping. My hematologist bumped me to 70 mg steroids started a series of Rituxan treatments.

My fourth infusion was last week and counts are at 328. I am currently on 50 mg steroids and my next taper is next week. The doctor attributed the counts to the Rituxan however I now realize it was probably a good response to the IVIG and steroids as the Rituxan response is more delayed.

Has anyone else had a combination of Rituxan and steroids?

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  • 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 11 months ago #21978 by Sandi
Replied by Sandi on topic Re: Rituxan and Steroids - scared
Sjakdi - it wouldn't be unusual to see a rise from Rituxan at this point. My counts were 3 the week of my third infusion and went to 150 the week of the fourth infusion. I wasn't using any other meds. If the rise was from IVIG, it would most likely be temporary.

Try not to worry about immunosuppression. Both of those drugs can cause the immune system to be suppressed, but not entirely. You'd be worse off if you didn't have a spleen. I never got sick any more often having used those meds. Just wash your hands often and use normal precautions.

As for PML - it's very rare. No use worrying about it now - you're already finished with Rituxan and there isn't anything you can do about it. So many people have used Rituxan here and I haven't seen one case of PML reported here yet.

Just breathe. You'll be okay.

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13 years 11 months ago - 13 years 11 months ago #21982 by Skadi
Replied by Skadi on topic Re: Rituxan and Steroids - scared
Thank you Sandi. It is helpful to know others have had both treatments at the same time.

I realize I was very naive since first being diagnosed, not having much experience at all with doctors and specialists.

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  • 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 11 months ago #21989 by Sandi
Replied by Sandi on topic Re: Rituxan and Steroids - scared
Everyone is naive when they are first diagnosed. I was! I went for five weekly Win-Rho treatments which didn't do a thing (per doctors advice). Knowing what I know now, there was never any point in going for a second one. It ended up costing me $1,400 out of pocket for something that was pointless.

PML can hit anyone, but mostly people who are on chemo or high doses of CellCept or people with immune-deficiencies. It is a scary thought and I'm glad no one knew about PML/Rituxan when I used it. I didn't have that worry. Just try to forget about it for now.

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13 years 11 months ago - 13 years 11 months ago #21991 by Skadi
Replied by Skadi on topic Re: Rituxan and Steroids - scared
I am much more relieved after having spent the day reading here in the treatments postings.

I am continuing to read so many amazing success stories here with Rituxan and I may soon be joining those ranks with counts at 330 1 week post the 4 week infusion. Only time will tell, but it sounds as though I may have saved myself months and/or years of frustration.

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13 years 11 months ago - 13 years 11 months ago #21992 by Skadi
Replied by Skadi on topic Re: Rituxan and Steroids - scared
That is another thing I am learning is that these treatments are expensive, especially the IVIG.

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13 years 11 months ago - 13 years 11 months ago #21993 by Skadi
Replied by Skadi on topic Re: Rituxan and Steroids - scared
.

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13 years 11 months ago #22002 by debrasla
Replied by debrasla on topic Re: Rituxan and Steroids - scared
My 22 year old son was just diagnosed in October with ITP. His platelets have been as low as 3000 and he has been on prednisone as high as 200 mg day and right now he is down to 100mg day and they are lowering it each week due to the fact he is now taking the Rituxan treatments. He has his last Rituxan treatment next Thursday. His platelets were only 43000 this week and that last week they were 53000, but after I checked this site and asked some questions, they said the Rituxan would not show if it is working for a couple more weeks. I am saddened for him that he has to sit there each Thursday for hours with the treatment, but I am prayerfull that this will put the ITP in remission.
So, I guess you are getting the same thing my son has been getting and are on the same track as him, however our doctor has had him on high doses of prednisone longer before the Rituxan treatment. He also has been hospitalized 2x for platelet treatments and the gammagloblin treatments due to the very low platelets. So, maybe we should keep each other posted on each others progress?

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13 years 11 months ago - 13 years 11 months ago #22003 by Skadi
Replied by Skadi on topic Re: Rituxan and Steroids - scared
I hope that the Rituxan works for your son. It sounds like it is keeping his counts are in a good range now. Also from reading others stories it doesn't sound like a 10000 count difference is that much and could just be normal daily fluctuation in the counts.

I can only imagine what it must be like for a mother to watch her son go through this. For me the worst part about all of this is the waiting.

It does sound like your son and I are on the same treatment path and I look forward to his updates.

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13 years 11 months ago #22004 by debrasla
Replied by debrasla on topic Re: Rituxan and Steroids - scared
I would love to see his platelets rise and stay there, he is trying to become a police officer and making police departments lists and interviews, and we are just praying this does not interfere with him getting hired soon. I dont like his platelets so wishy washy and wish they would at least stay up over 50000 at some point and stay up there for good! What are yours now? Oh, his medical bills are starting to role in after the insurance has paid(thankful for that!), but the residuals are mounting for me, but at least his is still covered under ours.

What were your symptoms? His was he was taking supplements for working out in October and he started bruising which lead to the blood tests which resulted in finding the ITP after the bone biopsy.

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13 years 11 months ago - 13 years 11 months ago #22005 by Skadi
Replied by Skadi on topic Re: Rituxan and Steroids - scared
The symptoms that lead to the diagnosis were a very heavy period with petechiae and bruising on my legs arms, and body. I noticed the petechiae on my lower legs about two weeks earlier but it had faded so I didn't think anything of it.

Good luck to your son on his interviews and exams and I hope his counts continue to rise!

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