Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! 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!

Restrictions while receiving Rituxan

More
9 years 1 week ago #56155 by Barb111
Restrictions while receiving Rituxan was created by Barb111
Are there any food restrictions while taking this med? Or anything else I should know. Start my first of 4 weekly infusions tomorrow.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
9 years 1 week ago #56157 by Sandi
Replied by Sandi on topic Restrictions while receiving Rituxan
Nope. Eat whatever you like.

Good luck!
More
9 years 1 week ago #56158 by Barb111
Replied by Barb111 on topic Restrictions while receiving Rituxan
Thanks!
I was reading that things like deli, sushi, raw fruits and vegetables were off limits due to the Rituxan compromising the immune system.
More
9 years 1 week ago #56162 by Margaret k
Replied by Margaret k on topic Restrictions while receiving Rituxan
My white cell count crashed after getting Rituxan last Dec and I became neutropenic therefore at risk to infection and in fact because it did no good to my platelets which were at 3 I got a really bad gum infection. While at risk of infection foods such as soft cheese, sushi, seafood which might cause infections should be avoided. Rituxan may or may not have been the culprit, I may have had a general autoimmune attack on my bone marrow but it might be worthwhile having a CBC and not just a platelet count when you finish the infusions.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
9 years 1 week ago #56164 by Sandi
Replied by Sandi on topic Restrictions while receiving Rituxan
True - I'd stay away from sushi. I never think of it because I would never eat it.
More
9 years 1 week ago #56170 by Barb111
Replied by Barb111 on topic Restrictions while receiving Rituxan
Damn, I eat sushi at least once per week. Oh, well!
Just had my CBC and count up to 45 before starting treatment today.
Just now starting pre-meds.....
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
9 years 1 week ago - 9 years 1 week ago #56171 by Hal9000
Replied by Hal9000 on topic Restrictions while receiving Rituxan
Up from 20 to 45, kewl.
Was there much to do to prepare for Rituxin? Drink a lot of water, or ?
Premeds are like Benadryl and Tylenol?

Oh BTW, did the doctor ever mention why he didn't try IVIG before Rituxin?

Good luck !
More
9 years 1 week ago #56174 by Barb111
Replied by Barb111 on topic Restrictions while receiving Rituxan
I believe if I was below 20, he would do IVIG as emergency treatment but Rituxan has longer lasting results. No prep at home I received Benadryl, Decadron, Tylenol and Zantac before Rituxan. Had slight reaction at 150 and had to pause to get more Benadryl, steroid and an Atavan. Itchy throat and lips and BP at 194/109. Down to 140/80 and itchiness is gone. I am on BP meds as a result of the prednisone I am on and they were going to give me some more if it didn't come down. Started back up and moving to 200 shortly.
More
9 years 1 week ago #56178 by Barb111
Replied by Barb111 on topic Restrictions while receiving Rituxan
Well, done and home. Everything went smoothly after the brief pause. I feel fine at the moment. Contemplated going grocery shopping, but decided the atavan is still making me a bit loopy!
Staying on 60mg until next infusion then dropping by 10 a week at that time until we get to 20. Then 15, 10. 7.5, 5, 2.5 (if all goes well, lol!)
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
9 years 1 week ago #56180 by Sandi
Replied by Sandi on topic Restrictions while receiving Rituxan
That's good news! Once you get through the first one, the rest usually go smoothly.
More
9 years 1 week ago #56183 by Barb111
Replied by Barb111 on topic Restrictions while receiving Rituxan
Yes, they said that too! I haven't had the moon face side effect yet from the Prednisone and thought I'd be off soon and would avoid it, But having to go up again to 60mg. daily plus the Decadron with the Rituxan ans Solumedrol today....That's alot of steroids. :(
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
9 years 1 week ago - 9 years 1 week ago #56184 by Hal9000
Replied by Hal9000 on topic Restrictions while receiving Rituxan
Below 20 count before IVIG. Ok, that would explain why my drug pusher, errr ahhh, I mean doctor has mentioned it to me.

BP down from 194 to 140? LOL, either you fell asleep or that Ativan is some powerful stuff.

One down, [strike]four[/strike] three to go, and a rainbow on the horizon.
More
9 years 1 week ago #56186 by Barb111
Replied by Barb111 on topic Restrictions while receiving Rituxan
Ativan is often used to relax smooth muscles to,lower BP. Worked within 20-30 minutes. Never was tired to fall asleep like some had said. I read, watched a movie. Checked emails, did some online shopping. Actually accomplished alot!
Was a bit anxious when I had the reaction but it passed after the additional meds and I felt great the rest of the infusion.
3 more to go for me.
More
9 years 5 days ago #56219 by Sandy Too
Replied by Sandy Too on topic Restrictions while receiving Rituxan
Hi Barb, so glad to read you are doing well and everything went well.
I am new to all this so I have learned allot and continue to learn thank you.
I have done two prednisone blasts for the past 7 months. It is hard.
I have a moon face and tummy to match!
But I am back at 10 mg of pred now, since about a week and am sure feeling a whole bunch better, just tired still, and am losing my puffy appearance so it's all good.
I am concerned though as my platelets are dropping again. We hope that on the 10 mg where I will stay for a while they won't drop to 13 like the other times.
I will also be looking at rituxan if things do drop too much.
What dose are you doing?
I think my rheumy would like me to try 100mg, 1X weekly for 4 weeks, but my hems said 375 mg...
my rheumy knows me best so it will be interesting what happens.
Hopefully nothing because my platelets stay about 20, then she said she will leave me alone.
Keep up the good work, thanks again for the play by play, and wishing you all the best. Sandy Too
More
9 years 5 days ago #56220 by Barb111
Replied by Barb111 on topic Restrictions while receiving Rituxan
Hi Sandy too. My prior auth for the Rituxan says 100mg. I have had no side effects from the infusion and feel good. I will have them 4 Fridays in a row, so 3 more. I did stop taking my daily sudafed to help with my BP so I am having some sinus pressure, but that started before the Rituxan. My BP is down to 135/88 on the BP meds. Still on 60 Prednisone until Friday.
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
9 years 5 days ago - 9 years 5 days ago #56225 by Hal9000
Replied by Hal9000 on topic Restrictions while receiving Rituxan
Excellent to hear no side effects and doing well.

100mg of Rituxin, nice.

You mentioned Decadron earlier. Is that like a really low dose, or, are you getting a higher dose and a combination treatment of Decadron and Rituxin? Or, perhaps your doctor considers the Prednisone with Rituxin as a combination treatment?
More
9 years 4 days ago #56228 by Barb111
Replied by Barb111 on topic Restrictions while receiving Rituxan
I have been on Prednisone for a bit over a month with no response. Currently on 60mg. And will be tapering off with each Rituxan infusion. Started the Rituxan 10/17. The Decadron is given as a pre-med before each infusion. Hope that clarifies.
More
9 years 4 days ago #56233 by Rob16
Replied by Rob16 on topic Restrictions while receiving Rituxan
I am happy to see that the low-dose Rituxan protocol (4 x 100 mg) is gaining favor.
For those who are less familiar with it, here is a link from 2-1/2 years ago that discusses it,
titled, Low dose rituximab (Rituxan) research".
pdsa.org/forum-sp-534/7-treatment-general/27993-low-dose-rituximab-rituxan-research.html?limitstart=0#40349
In brief, 7 studies with 199 subjects used the low-dose protocol, without losing effectiveness compared to the standard (higher dose) protocol. In addition, there was some indication that combining the Rituxan with dexamethasone pulse seemed to increase the effectiveness.
More
9 years 1 day ago #56279 by Winnifred
Replied by Winnifred on topic Restrictions while receiving Rituxan
Glad to hear 1st infusion went good. I too had issues on 1st infusion but nothing on the last 3
More
9 years 1 day ago #56280 by Barb111
Replied by Barb111 on topic Restrictions while receiving Rituxan
Thanks! Today was uneventful! They kept me at the same rate due to last week, but next time it will be sped up. Absolutely no tiredness during it, even with the premeds! Prednisone starts at 50mg. tomorrow.
More
9 years 1 day ago #56282 by Julier
Replied by Julier on topic Restrictions while receiving Rituxan
Can you give me some info on this RX. I'm going to have IVIG then Rituxan. The doctor said once a week for 4 weeks. He's treating my severe lupuso bUT also my platelets are 15.
More
9 years 1 day ago - 9 years 1 day ago #56283 by Barb111
Replied by Barb111 on topic Restrictions while receiving Rituxan
From the top of this page under treatments, look at coventional B cell depletion
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
9 years 1 day ago #56284 by Hal9000
Replied by Hal9000 on topic Restrictions while receiving Rituxan
Julie, when do you start IVIG? I start mine monday.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
9 years 7 hours ago #56297 by Sandi
Replied by Sandi on topic Restrictions while receiving Rituxan
Why IVIG? Most of the time it's not worth the time and expense.
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
8 years 11 months ago #56304 by Hal9000
Replied by Hal9000 on topic Restrictions while receiving Rituxan
Why IVIG? A couple of reasons. My response to steroids is poor so I need a rescue therapy from my normal count range of 12 to 18. Also, because of insurance deductible my target is to get both IVIG and Rituxin treatments done before the end of the year.

And then there is a third reason, LOL. I love science experiments and want to see if the IVIG will stop both my itching and my hairline dermatitis. Both of those went away when I had my appendectomy this summer and my counts went up to 134 within a few days after discharge.

Stepping up to soapbox.
Why can my body decide to go into ITP remission for several days in a row after an appendectomy yet modern medicine can't figure out how to do the same thing ? ? This is ridiculous !
Stepping down from soapbox.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
8 years 11 months ago #56315 by Sandi
Replied by Sandi on topic Restrictions while receiving Rituxan
My two cents on rescue treatment - 'rescue' means 'need now', not days from now. It's such a temporary thing that within six days after the infusion, you could be back to where you are now.

It would be interesting to see if it helps the dermatitis though.
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
8 years 11 months ago #56318 by Hal9000
Replied by Hal9000 on topic Restrictions while receiving Rituxan
I'm getting IVIG for five days. Doc talked about a CBC on fifth day and perhaps the third too.

You are thinking the itching will surely go away with treatment? I wonder about the dermatitis issue too.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
8 years 11 months ago #56320 by Sandi
Replied by Sandi on topic Restrictions while receiving Rituxan
Five days! Yikes! I hope it's worth it!

I have no idea if it will help with the itching. I've never heard of IVIG being used to treat that, so I don't know if there is any data.
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
8 years 11 months ago #56321 by Hal9000
Replied by Hal9000 on topic Restrictions while receiving Rituxan
I think it is a typical two day dose spread out over five. From what I am able to find out through research, this is a slightly less risky way to infuse IVIG.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
8 years 11 months ago #56322 by Sandi
Replied by Sandi on topic Restrictions while receiving Rituxan
It might help to prevent aseptic meningitis. Make sure you get pre-meds and stay hydrated.