TOPIC: Considerations with starting Rituximab?

Hey Hal!! And everyone else! Third round of Rituxan was a breeze I was still too afraid to totally bump it up so I did increases of 50 every 30 mins but I did hit the max! Took 4 hours instead of the dreaded 6 so that was amazing. Counts were 307 on 10/8/19 and 3rd Ritux was 10/09/19 so I did actually see a decrease which I thought was strange but it’s still a good range. That would be helpful to know if Sandi also experienced this too! Started my Pred taper so currently taking 70mg. Hopefully things stay okay but so far so good. So nice to hear from you Hal! I started having a slight discomfort/pain in the lower left abdomen, nothing that is super painful but uncomfortable. I mentioned this to my doctors too so we’re just watching it and will address it more next week. Has anyone else experienced this? Currently taking Pred 70mg everyday, Iron pills every other day (anemia caused by iron deficiency), and folic acid 1mg everyday. I know they said iron can cause stomach pain and bloating so I’m not sure.

Only one more ManifestMe. These 300 plus counts are amazing. From the earlier comment here by CindyL, one has to wonder if a quick count response is indicative of a long lasting subsequent remission.

Hope the pred taper is going well.

Hey Hal! Thank you for the reply once again! 4th round of Ritux on 10/16/19 went just fine. So glad to be done with it!!!! It went super quick which was nice! Hopefully I see some good results! It would be a bummer if it were for nothing but hey! Counts were 296 on 10/15/19. I’m still tapering so I’m currently on 60mg pred. I start 50mg tomorrow. The taper is going okay but ehhhhhhh I just wish I could sleep lol! That has been the hardest part so far. I don’t think I ever mentioned my age, not that it really matters but I know when I was first diagnosed I found it nice to know peoples experiences and ages and such. I’m a 27 year old female. Lol! Well wishes to all of you! Hope everyone is doing okay.

Great counts. You have my deepest sympathies with the Pred. I was manic and simultaneously exhausted. It got better once I got below 15mg/day.

Haha! Thanks mrsb!!! The sleeping is so bad that I asked for sleeping pills at my last appt but the sleeping pills don’t keep me asleep either (only tried them for 2 days) which is frustrating. They prescribed Trazodone for sleep and I feel like I sleep the same. I don’t have a problem falling asleep I just end up waking up every night and only getting between 3-4 hours. The exhaustion stuff is so weird like my body has never felt this off. It almost feels like when my counts are super low when I get so exhausted due to lack of sleep. It’s the weirdest feeling and it definitely impacts daily life. My eye is super twitchy now as well I feel like it won’t go away. But as you said mrsb this is going to be a journey so I’m prepared lol. Thank you for your well wishes mrsb! I hope you are feeling great!!! And thanks for all the advice you’ve given to me.

You're welcome.

Hi,
I am, for now at least, a success story. When my counts dropped to 2 during a routine check I had a fun 4 day hospital stay. I did respond to Steroids, but once I stopped so did the results. We ended up doing 4 treatments of Rituximab. 1 in hospital and 3 outpatient. I did get the full recommended vaccines first. For me it was really just pneumonia and Shingles. I thought both were reasonable. I was able to work through it all, tired and slow but functionable. It's been over a year and a half and my numbers are still fine! I know everyone respond differently, but for me, it brought me to remission.

Wow Kae! That’s amazing! So happy to hear that you are in remission from the Ritux. Thanks for returning to update us. It really helps those of us who are currently going through treatments and trying to figure it all out. Best of luck to you and I hope your remission is a forever one.

Glad Rituxan treatments have gone so well ManifestMe.

Now for the dreaded steroid taper. I've only had a 4 day steroid Dex pulse treatment before, so I've only experienced a couple of days of the 'can't sleep' issue. Another thing I remember was sugar lost its taste which made it easy to consume a lot of sugar and not feel satiated by it.
LOL, I'm an old retired guy. Being retired would be the only way I could have spent so much time researching ITP. Mainly reading past stories here on PDSA and trying to categorize them into groups.

Cheers to a forever remission !

Hello! Just updating. I had a follow up appointment and blood work after my last Ritux (last Ritux 10/16 and first Ritux 9/20) on Nov 4 2019. My platelets were at 273, I’m still on my taper from Prednisone. I’m currently taking 30 mg. But they said since my levels look good they would like to continue the taper. So in two days I will start 25mg and go down 5s for 5 days until I get to 5mg. The problem I’m having now is with ferritin. My iron storage is low so we’re trying to figure out why (I’m anemic, guess I have been for many many years). I’m having super sensitive teeth and joint tightness/stiffness it almost feels like my joints lock up for a second and then it’s fine. Also I have hoarseness. I’ve told my doctors all this and they don’t seem all that concerned, they said many symptoms will go away after I stop taking the medication. Has anyone else experienced these symptoms? Hope everyone is doing well!

ManifestMe.
Good count.
Please read this link before tapering your steroids.
pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/30450-advice-for-anyone-new-to-steroid-tapering.html#67722

Thanks mrsb04!
Another update! I went in to have an iron infusion and got my levels checked before this infusion. On 11/18/19 my platelets were 376! Could this be that the Ritux treatments are working?! Lol I sure hope so! Still tapering on the prednisone as well. So my dose is lower and my platelets are higher than they were on Nov 4th (273). Fingers crossed.

They could always do a blood test to check whether B cells are depleted or not.

Hello all,

I got my counts checked on 12/9/19 and they were 255. I’m no longer taking any medications. Last Ritux was 10/16. Everything seems to be going okay. I’m noticing some weird redness on my arms and a small red spot on my leg. I’m soooo hoping this doesn’t mean that my counts are dropping. I feel like I’ve been more paranoid and aware of my body since being diagnosed. I’ll have some labs done if this doesn’t clear up in a couple of days. My hemo said it’s standard for Ritux remissions to last 6 mos- 1 year or so. So I’m hoping my levels haven’t dropped this quick already. I also asked my hemo for the fun of it if she’d seen or heard of anyone being “cured” after Ritux she said nope! She’s like “your counts will drop again” I figured this much but I definitely know of people on this site who’ve had long remissions. Hopefully I can find something that works for me! I hope everyone is well!

"My hemo said it’s standard for Ritux remissions to last 6 mos- 1 year or so."

Everyone is different - I have a friend who was given Rituxan a number of years ago - not only is she still with great counts it also helped her RA! So you just don't know.

Yeah my hemo seems a bit... out of touch with super long remissions and things of that sort. She seems pretty set on counts dropping “eventually” I just don’t think they’re as invested as we are. Being that we’re a part of different communities (such as this) and sharing stories and being the ones who are actually going through this and dealing with the disease firsthand. That’s just my thought. I know there are many people who do get remissions that have lasted way longer than a year with Ritux. I don’t think that is me though lol being as though I’m seeing what looks sorta like Petechiae. I’ll get labs drawn tomorrow to make sure I’m alright. Thanks for the reply! (:

Manifest, I've been in remission since 2011 from Rituxan.
Good luck with your labs tomorrow (today).

Manifest lets think positive - I'm hoping your count is a good one today!! Be sure to let us know!!

You guys are the best! Thank you for the replies. I should try to be more positive. I just don’t want to ignore signs that something could be wrong too. I always feel so supported and uplifted by you all. It turns out the red spots that I’m seeing aren’t Petechiae although they look like it. I got labs drawn and my levels were just fine! 246.

That's an awesome count!

Well good for you and those platelets
No you don't want to ignore signs if you think something is wrong - so the thing to do is go in for a count so you know for sure one way or the other. In the meantime stick to being positive!!