Rituxan seems to be working!

My prednisone is now tapered to 10, down from 60. And, since starting the Rituxan my platelets are up to 110 from 20 before treatment. Very happy!

Plus 20 per week like clock work. Over 100 now, wooo hooo

Yes, very good. No difficulty with the prednisone taper. Will start doing 2.5 drops per week next.

Barb..get down to 7.5 pred which is the physiological dose then slow the taper down..give your adrenals time to kick back in otherwise you'll be in a right mess.

Please trust me I've been there, got the T shirt & would not wish it on my worst enemy

The plan is 10, 7.5, 5, 2.5. Each for a week. Then, 2.5 every other day for a week.
My hemo says this is the recommended taper and in all his years, he has not had anyone have a problem. Would you recommend anything different?

Counts still going up! 130 as of today. Prednisone down to 7.5 mg. Hope the effects of Rituxan lasts.

More good news. Is that 130 count from week 6 or 7 of start?

Has your doctor made any comment about this slow but steady response?

That is a too fast taper for doses below 7.5mg a day.

Have a look at this thread

www.pdsa.org/forum-sp-534/7-treatment-general/29130-steroid-tapering-secondary-adrenal-insufficiency.html#54158

Yes, I have read that and also spoke to my hematologist and my PCP and they both feel that for me the taper prescribed is safe. I have enough pills to maybe do a 6.25 and a 3.75 for a week, but that is it.

Everyone is a bit different- there isn't one pred tapering schedule that fits all, but generally speaking: Tapering prednisone all depends on how long you've been on it. The longer you are on it the more dependent you get. The adrenals will atrophy after a while, if they have atrophied they simply cannot bounce back quickly.

I have done several super-slow tapers because I have been on pred for over 1 year at a time. My adrenals were certainly atrophied, so needed a slow taper to give them time to come back.

Not sure how long you've been on prednisone Barb, if its like a couple months then the tapering schedule should be fine. Good that you are taking an extra week to get from 2.5 to zero.

Recently I took 10mg for 3 days and just stopped without tapering- I wasn't dependent on it at all so it wasn't a problem to stop.

Symptoms of low adrenals are fatigue, flu-like body aches, muscle weakness, tired- sleepiness, chills, joint pain, etc.

Great that your counts are up! yay!

Ues, poseymint. That is what my doctors said. I have only been on it for 2 months before tapering down from 60.

Quick update. My CBC from today has my count at 145. Eight weeks out from starting Rituxan. Was 20 at my lowest before the infusions. I am still tapering my prednisone down from 60. I am on 6.25 this week and go to 5 next week. I decided on my own not to taper down by increments of 2.5, but 1.25 per week. I am having some mild muscle cramping and joint pain but nothing that is annoying. I just notice it now an then. My BP is also better. Still on low dose BP meds but it is usually 120's over 70's. My glucose did shoot up over the past few weeks. No history of issues. Usually runs in the 90's. Has been over 100 and today was 112. Maybe the prednisone finally caught up with me. Or, the BP meds that can increase glucose also. Will wait and see what happens when totally off prednisone. Very happy with my counts, though!

Looking good, Barb! I can't believe Rituxan was that long ago already. Time flies.

I know! Seems like yesterday that I packed my infusion day bag for the first time! Lol!

145? You're in. You're above 140. Doesn't that qualify you as having a 'full response' instead of a 'partial response' now?

Finally. I pack my infusion day bag this Friday for first Rituxan. Ack! How does one not worry all day leading up to this?

I'm going to close my eyes, click my heels, and say 'there is no count like a 300 count' over and over to get some sleep between now and then.

I really rely on you guys for that type of information. I will have to read up on full vs. partial tesponse. I am just glad the numbers went up over 50! I don't see my doctor until February for follow up so we will see if they maintain. I was more anxious to start the infusions than nervous. I did not feel sleepy at all, so I packed alot to do. Did most of my holiday shopping online! I assume your authorization came through. I will be thinking of you Friday. Let us all know how it went.


So, my curiousity got the best of me. 145 is still partial. Above 150 is full. Hopefully, next week. But again, anything over 50 was my hoal if not remission. .....

Barb
www.nice.org.uk/advice/esuom35/chapter/key-points-from-the-evidence

I don't know if you will be able to access this from the US. I hope so as it is an interesting read about responses to Rituximab.

If you can't message me with your e mail address then I'll down load it & send it
Anne

Got it. Thanks!
Will spend some time reading it after work today. Full patient schedule before the holidays!

I dunno. My CBCs qualify the lower end of normal range as 140. You're normal, err ahh I mean, you're in the normal range.

Ok. So my count continues to climb. I am currently at 175. About 10 weeks out from last dose of Rituxan. Totally off Prednisone for a week. Counts consistently climbing the entire time. Does this mean remission?

I would sure count it as the start of remission! As long as counts are above treatment level without meds, it can be considered remission. Happy for you!

great news Barb

Thanks! I hope the numbers stick around for awhile!

Congratulations Barb!

Great news about the counts. Here's hoping that you get a huge remission!

I think many studies use sustained over 100 as a threshold for remission. But you've had Pred, albeit low dose, going in the background - which blurs things. LOL, now it is clear, your normal.

Cheers to a never ending remission Barb !

Thanks everyone for the encouragement!
Hal, I hope your Rituxan kicks in soon!