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Rituxan Update

Started by wordnerd, June 17, 2009, 05:04:11 PM

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genko_b

#30
July 05, 2009, 09:21:55 PM
Are you doing better after the infusion? I hope so - it sure seems the treatments can be as problematic as what they are intended to treat.

Genko

wordnerd

#31
July 05, 2009, 09:43:35 PM
I'm doing ok...  I'm still running a fever.  But overall on the higher dose of prednisone I've been a lot better than after the first infusion.  Much less tired than last time.   I kinda overdid it this weekend again though.  Went out a few times cause its Sarina's last weekend w/ me.  I'm going to miss her so much.  She leaves Wed.

I start tappering the prednisone again tomorrow.  I'll see if I can tolerate the lower dose.

Thanks for all the continued support!

<3 Lauren

P.S.  I took a video of my infusion as it was happening.  Should have a video of it up on my blog soon!

homersmom5

#32
July 06, 2009, 04:46:05 PM
Hi Lauren,
I hope you are feeling better soo. Do you premedicate? For my IVIG infussions my rheumie has them put Decadron & Benedryl in my IV before starting the ifussion. My friend who has lymphoma also gets it before her chemo. It made a big difference for both of us.
Good luck,
Patricia

gurs

#33
July 07, 2009, 04:51:55 AM
We'll, after 6 weeks from my last rituxan, still feeling worse than ever!!! what the heck!!! I had some labs done last week and my ANA titer jumped to 1:2560 now?
Not sure if this aggravated something...my doc thinks it was the huge steriod infusion that set this off..hope in time it gets better. I guess I will have to bump up my prednisone.

Lauren, hope your feeling better soon.

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

wordnerd

#34
July 07, 2009, 06:56:59 AM
Gurs,

Wow I'm so sorry this isn't working out for you!  That's horrible :(  I hope you feel better soon too!

Patricia,

Yes I was premedicated.  I got oral benydryl and tylenol as well as IV solimedrol. 

I'm hanging in there in the meantime, but I have a bit of a sore throat this morning.  I hope it's just allergy or that I was breathing through my mouth in my sleep or something!  I am leaving on my trip in 10 days and I really need to feel better by then!  (I'm going to a conference for the kind of game development I do for the weekend!)

<3 Lauren

rnathans

#35
July 07, 2009, 01:25:33 PM
Quote from: gurs on July 07, 2009, 04:51:55 AM
We'll, after 6 weeks from my last rituxan, still feeling worse than ever!!! what the heck!!! I had some labs done last week and my ANA titer jumped to 1:2560 now?
Not sure if this aggravated something...my doc thinks it was the huge steriod infusion that set this off..hope in time it gets better. I guess I will have to bump up my prednisone.

Lauren, hope your feeling better soon.

Gursie
I find your doc's comment about steroids making symptoms worse. Right now I am getting 1000mg of IV steroids each day for 2 days in a row once every 4 weeks and the steroid infusions have made me feel much better. I am also on methotrexate long term.

gurs

#36
July 08, 2009, 05:45:09 AM
I think my doc meant that the inital dose IV 150, then to drop to almost nothing (20mgs) is hard on the body...I guess if I were to keep getting IV's of it, I would feel much better, But I cant rely on them like that.  Wow..1000mg of IV steriods? that seems like alot? how long will you keep getting them?
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Linda196

#37
July 08, 2009, 05:58:26 AM
It's difficult to compare the doses of IV and oral steroids, because there are a few types and they have different relative content. For example, SoluCortef and Prednisone have a relativity of 1:5, so 1000 mg of IV cortisone would be the equivalent of 200 mg of oral Prednisone. There are also other forms that have different relative content.

Remember, too, the IVIG contains the immunoglobulins that actually produce antibodies, so a fresh new supply might have triggered fresh new antibody production.
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gurs

#38
July 08, 2009, 10:38:22 AM
Oh, thanks Linda for the info...
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

wordnerd

#39
July 08, 2009, 10:56:16 AM
The video of my infusion is edited and up for viewing!

http://novelpatient.com/2009/07/07/rituxan-take-two/ 
(If you use Internet Explorer 7 and are having trouble viewing the page use this link: http://community.novelpatient.com/blog/2009/07/07/rituxan-take-two/ )

Let me know what you think!  ;D

<3 Lauren

Billydude

#40
July 08, 2009, 06:57:12 PM
Thanks for posting this Lauren.   I was just told yesterday that this is the next course my rhumy whats me to take so its good to see what will happen.
Steve

rnathans

#41
July 09, 2009, 10:33:44 AM
Quote from: gurs on July 08, 2009, 05:45:09 AM
I think my doc meant that the inital dose IV 150, then to drop to almost nothing (20mgs) is hard on the body...I guess if I were to keep getting IV's of it, I would feel much better, But I cant rely on them like that.  Wow..1000mg of IV steriods? that seems like alot? how long will you keep getting them?
I am doing monthly  IV steroids instead of daily oral steroids b/c there are much fewer systemic side effects such as bone loss, weight gain, etc. We are now going to see whether 1000mg one day a month instead of 2 days in a row is enough but the plan is to continue monthly IV steroids indefinitely as long as it helps.

Interestingly, my steroid protocol is one that is commonly used as a maintenance treatment in MS as well.

wordnerd

#42
July 10, 2009, 11:00:25 PM
Steve - I'm glad the video was helpful to watch and I wish you the best with your infusion!

I tried tapering the Prednisone at the beginning of the week, and my fever and back pain got worse, so now I'm back up to 25mg a day again.  It would be nice to know how long this adverse reaction is going to last!  Especially since I'm going out of town next week...

I've felt like I've had the flu for the last 3.5 weeks and am frankly getting tired of it.  I don't like how the extra prednisone makes me feel either :(

The stress of Sarina (my caregiver) leaving (as well as some other extremely stressful events) isn't helping I'm sure.  I think I've figured out who I'm going to hire to replace her though.

Hopefully next week will be better than this one has.

<3 Lauren
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