Bring on the Rituxan!

:woohoo: The time has come for me to get to the next level of treatment. Bye bye prednisone! :whistle:

Last Wednesday my platelets fell to 14,000. The lowest I've been since being in the hospital 6 months ago (I went down to 3,000). I saw my doctors yesterday and we decided to do a fast taper off prednisone since I went up to 60mg last week from 5mg (really bummed about that, my skin was almost clear from acne) and next Friday I'll be starting my first dose of Rituxan.

Did anyone lose their hair? I'm doing the standard treatment of 375/mg once a week for four weeks. I figured if I started to lose it, I would donate it to locks of love. My hair is naturally platinum blonde and down almost to my hips so it would be a nice wig! It also came in handy when I was Elsa for a children's halloween party

Any other advice or tips from Rituxan veterans is appreciated. My only "freak out" is getting sick with a lowered immune system. My mother is back on her "oh she needs to live in a bubble" crap that I can't stand hearing at 28!

I dont think most people lose their hair, it is not like chemo with the hair loss. I woukd recommend taking something to read or an ipad as you have to sit for a while. Some snacks are good too. Dont worry if it does not work right away, it can take up to 12 weeks. I never had a problem with getting sick more than usual after Rituxan. If you are due for a flu shot you should get it before as it is less likely to be effective after. Hope you have good succes with it!.

Nah, Rituxan doesn't cause hair loss. It's a biologic, not a chemo.

I slept during most of the infusions. They give pre-meds that can knock you out. I took a book, but couldn't read it...I kept staring at the same page over and over.

Like Dru, I didn't get sick after Rituxan either. I was just fine.

You might lose hair due to the prednisone you have taken. The first time I took Rituxan, my athletes feet (actually a toenail) got worse as my Dr predicted. I had it removed and it grew back fine. And I had "flu like" symptoms each time around the 2nd or 3rd week. I got a fever and chills and it was gone in 24 hours with no meds. Other than that no problems.

I did get a 4.5 year remission the first time and just ended my 3.5 year remission on Sunday.

I took my laptop, and altho the Dr's clinic said they didn't have WIFI, they did and I watched a movie during treatment. And wrote on the PDSA website. It was cool to be on the board during treatment.

When it comes to the infusion itself, I have learned that my body likes to take it slow, and speed up later. The nurses will watch you carefully to make sure you aren't having a reaction. On the first round they watched me and any little cough they were over there to see how I was doing.

Four years later, I had a different nurse who said I was overreacting when I started coughing and asked it to be slowed down. She asked my Dr to give me an anti anxiety med before I came in next time. I didn't take it. I did fine on the second time, of course I was on a lower amount of prednisone, which probably made me calmer! I was pretty upset with her then. But I just look back and laugh at it now.


When is your first infusion? I remember how Sandi was there the to calm me down the night before my first infusion reassuring me that things would probably go well.
Good luck,

Keep us updated!

Wow ananta! Those remission periods are amazing. I hope to be that lucky, but I would be happy with a year at this point.

I will be doing round one on Friday the 14th. The wait is killing me, I am anxious to see how I will feel and how quickly it will work. Hopefully I can do a steady reduction with the prednisone because my poor body can't take it much longer.

On a side note, the weather down here is crummy today. A lot of rain, which is making my allergies go wild. The headaches won't stop!

Ladynole,

I can only speak from 2nd hand knowledge , as I have not had the treatment .
BUT I did attend a dear friends 4 treatments for her Waldenstromes ( Lymphoma ).
a type of cancer . And after all treatments & 2 months since , she still has a beautiful head of hair ! But it did not help her problem though & she has since seeked alternative treatments.
Also , she did not have many side effects - none severe !!


SuperDave
trying to stay positive

I've had one year remission so far, after Rituximab: Long may it continue!. The infusion was generally uneventful. But I did have pins and needles at the first infusion and was given extra Premeds (- I did a running commentary somewhere on this site). I would keep pretty alert on the first infusion, and always inform the nurse/ doctor, if you have any uncomfortable symptoms or you are not sure. Keep the medical staff informed. All the best and may God grant you a long remission.

:laugh: I survived my first treatment yesterday!

My premeds consisted of 650mg of Tylenol taken in pill form, 125mg of methyl-prednisone and 50mg of Benadryl via IV. Once that all went in, they waited 30 minutes and then started my Rituxan dip at 50mg/hour. After the first hour they increased the drip by 50mg every 30 minutes.

My face turned extremely red and felt flushed at about the 100mg-150mg mark. Other than that I was very fortunate. I wasn't able to fall asleep despite not sleeping the night before. My nerves were in full force! Today I was beyond fatigued. I felt like I had nothing left for 85% of the day. Even taking a shower was a task. Appetite is suppressed quite a bit, especially in comparison to what I have been experiencing on high doses of prednisone for the last 6 months.

I go back for round 2 on Friday. I am hoping it goes much quicker!

I'm glad all went well. Good luck with #2!

How's it going LadyNole?

Any numbers to report?

Good luck with Rituxan my first round gave me 6 years of remission. This time I couldn't complete the full round but platelets as of Monday are good!

Here's hoping you have a great long remission!

Bad brain fog going on! I'm heading in for my final treatment on Friday. As of last week I was at 234,000 platelets. I was also on 20g of prednisone so we will see what happens this week since I went down to 10mg.

The side effects got worse after each treatment. Some stomach issues, a little nausea, TERRIBLE heartburn (but that might be the prednisone) and a lot of sweating. I am looking forward to being done and being able to enjoy a beer again.

I have also gained 25lbs in the last 7 months. I will be shaving that off come January 1st. I am just grossed out by what I see! There is so much fat sitting in the spare tire area, it is crazy!!

Thanks for sharing. I started Rituxan today for the first time. Experienced some mild allergic reactions (tingly tongue and extremely itchy feet) and had to take a break and run it slower. The amount of antihistamines I ended up taking has been nice -- to counterbalance the daily 80 mg of Prednisone I've been on for the past four weeks.

It makes me feel hopeful to read people having a good chunk of remission period. I've known I've had ITP for a while (my counts were so safe I didn't even have a hematologist) -- but never had critically low plateletes until a few of weeks ago. So all of the medical stuff and questions I have -- information about treatments, side effects, managing life with rollercoasting platelet counts and all -- is very new to me.