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About to start Rituxan

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9 years 3 months ago #56034 by Barb111
About to start Rituxan was created by Barb111
Saw the doctor today and we both agreed that the Prednisone is doing nothing. He will try to get insurance to pay for Rituxan and will start my weekly infusions next Friday. Dropping the Prednisone to 30 for a week, then 20, 15 and 10. Will discuss slower taper after that. Biggest issue is my BP. Was 180/109 today! Now I need to start BP meds. Hoping once off the steroids, it will go down to normal again. This has me more worried than the ITP!

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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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9 years 3 months ago #56036 by Sandi
Replied by Sandi on topic About to start Rituxan
Yeah, high BP can be a pain in the butt. I have it too. I hope you get it under control quickly.

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9 years 3 months ago #56037 by Barb111
Replied by Barb111 on topic About to start Rituxan
Me, too! Have to get a Hepatic Panel done on Monday and then they will start me on Lisinopril. More meds.... :(

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  • Melinda
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9 years 3 months ago #56042 by Melinda
Replied by Melinda on topic About to start Rituxan
You'll get the bp under control eventually - sometimes it takes 2-3 meds before that happens so don't be alarmed [and get your bp up more].

Make sure you have approval for Rituxan before getting it!!!

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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9 years 3 months ago #56044 by Hal9000
Replied by Hal9000 on topic About to start Rituxan
A couple of BP tips for you Barb.

I took caffeine out of my diet and lowered my BP by at least 10 points.

When you sit down to have BP taken, relax your body fully. Especially, relax your stomach muscles and leg muscles. The first/top number will be lower and more consistent from test to test when you do this.
ITP Types and Treatments by HAL

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9 years 3 months ago #56049 by Barb111
Replied by Barb111 on topic About to start Rituxan
Yes! I will confirm the Prior Auth before the appointment. :)

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9 years 3 months ago #56050 by Barb111
Replied by Barb111 on topic About to start Rituxan
Yes, I work at the hospital and heard of this. Will definitely try it. Thanks!

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9 years 3 months ago #56058 by Barb111
Replied by Barb111 on topic About to start Rituxan
Can someone give me an idea of what to expect during my first infusion?

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9 years 3 months ago #56061 by eklein
Replied by eklein on topic About to start Rituxan
Drowsiness from Benadryl, boredom, nice people. Bring snacks.
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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9 years 3 months ago #56062 by Barb111
Replied by Barb111 on topic About to start Rituxan
Ha! I like your honest answer. I will bring my iPad and headphones. Maybe download a movie. Our cancer center brings you lunch, but I will bring snacks. Wear comfy clothes. Maybe I will post a live play by play for others! Hopefully, won't get any complications. Fingers crossed.

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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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9 years 3 months ago #56064 by Sandi
Replied by Sandi on topic About to start Rituxan
I fell asleep. I brought a book but kept reading the same sentence over and over. I finally gave up and dozed. I remember the staff checking on me all the time but I was out of it.

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9 years 3 months ago #56065 by Barb111
Replied by Barb111 on topic About to start Rituxan
Oh, ok. They told me to bring stuff to do, like my laptop. So, I pictured sitting a recliner with the IV trying to keep busy. I will bring the stuff just in case.

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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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9 years 3 months ago #56066 by Sandi
Replied by Sandi on topic About to start Rituxan
You might feel awake...some people do. It knocked me out though. I'm weird but I actually thought of it as a vacation day from work. I got to just relax and sleep, which never happened any other ordinary day.

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9 years 3 months ago #56067 by Barb111
Replied by Barb111 on topic About to start Rituxan
I can see that...unfortunately, I work in the adjoining children's hospital so it will feel a bit like being at work.

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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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9 years 3 months ago #56071 by Sandi
Replied by Sandi on topic About to start Rituxan
Except that you'll have people taking care of you instead. :)

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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9 years 3 months ago #56072 by EmilyK
Replied by EmilyK on topic About to start Rituxan
I also slept through the first one. They gave me less Benadryl each time so I slept less each time, but they also sped up the rate of the infusion so each week took less time. Sadly, it had no effect on my platelets. Good luck.

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9 years 3 months ago #56073 by Barb111
Replied by Barb111 on topic About to start Rituxan
Sorry to hear it had no effect, but sounds like it was not too unpleasant.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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9 years 3 months ago #56074 by EmilyK
Replied by EmilyK on topic About to start Rituxan
I had no unpleasant side effects from the rituxan. I later tried promacta and that did the trick for me. It took some bouncing around of doses but then my hemo and I got a plan and it worked great. In fact i tapered off it completely in june (I think) and my count two weeks ago was 60K which was fantastic! I was diagnosed at 13,000 and went as low as 2,000. I only felt awful when I was on prednisone and unless I am literally going to die without it, I will not voluntarily ever go back on high dose steroids. ITP treatment is a journey of patience. Don't get frustrated or lose confidence that something will work even if rituxan turns out not to be the right thing.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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9 years 3 months ago #56075 by EmilyK
Replied by EmilyK on topic About to start Rituxan
I also got high bp from the steroids. Once i got off of them, my bp returned to its normal low blood pressure. I did not taken any meds for the bp and while my doctor at the time freaked about my ITP, he was unconcerned about my bp.

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9 years 3 months ago #56076 by Barb111
Replied by Barb111 on topic About to start Rituxan
Ha! He freaked out over the 180/100. Called my PCP right then and there to recommend meds. Hopefully I will come off of them after finishing the prednisone. How high did your bp go?

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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9 years 3 months ago #56090 by EmilyK
Replied by EmilyK on topic About to start Rituxan
156/96 appears to be the highest it went.

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9 years 3 months ago #56091 by Barb111
Replied by Barb111 on topic About to start Rituxan
I was at 160/99 yesterday and 160/96 today. Really hate adding a bp med. on top of everything else.

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  • Melinda
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9 years 3 months ago - 9 years 3 months ago #56095 by Melinda
Replied by Melinda on topic About to start Rituxan
Personally I'd rather not have a heart attack so to add a bp med or 2 would be fine with me.

www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/blood-pressure/art-20050982

(Top)
160 or higher
(Bottom)
or 100 or higher =
Stage 2 hypertension

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9 years 3 months ago #56096 by Barb111
Replied by Barb111 on topic About to start Rituxan
Too aware of the numbers as I work in the medical field, lol. I meant adding a med, if the numbers are going to decrease on their own as I am being tapered off Prednisone.

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9 years 3 months ago #56112 by Barb111
Replied by Barb111 on topic About to start Rituxan
Well today my number is down from 31 to 20. Doctor increased my prednisone from 30 back up to 60. Suppose to start bp meds tonight. Waiting for primary to call and give go ahead after reviewing renal blood work. Got prior auth for Rituxan to start Friday. Never have been at 20. Freaking out a bit.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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9 years 3 months ago #56121 by EmilyK
Replied by EmilyK on topic About to start Rituxan
If your symptoms did not change do not freak out at the number. Deep breathing. It will be ok. Rituxan can take some time so don't expect immediate results. There are more options even if rituxan doesn't work. We are here for you, call me Any time or send a private email. .

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9 years 3 months ago #56122 by Barb111
Replied by Barb111 on topic About to start Rituxan
Thanks, Emily. Just hated to have to up the prednisone again. He did it to hopefully keep me above 20 until Friday. He mentioned IVIG if I drop drastically before then. He did say he can taper me down sooner this time. Overall, it adds another 3 weeks. Ugh! Took my first bp med tonight. Hoping things turn around soon.

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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9 years 3 months ago #56125 by Hal9000
Replied by Hal9000 on topic About to start Rituxan
We are behind you Barb.

FYI, ran across this TED talk on 'making stress your friend' in a different PDSA thread. Not sure if effective.

www.youtube.com/watch?v=RcGyVTAoXEU
ITP Types and Treatments by HAL

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9 years 3 months ago #56132 by Barb111
Replied by Barb111 on topic About to start Rituxan
Still here! Had a pretty stress free day. Started my bp meds last night and went well. Down today to about 150/88 after first pill. No rashes or bleeding. Knock on my wood. Looking forward to starting Rituxan.

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9 years 3 months ago #56195 by Barb111
Replied by Barb111 on topic About to start Rituxan
Had the first dose yesterday. Posted on the Restriction while on Rituxan thread because I forgot I had this one started, so you can check that out if you want. Slept great last night even with all the extra decadron and solumedrol they gave me. Feel great today. I have had a sinus headache the last few days but unrelated. Hoping the next three treatments go well and will start tapering off prednisone.

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IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.