New to ITP

Finally started the Rituxan yesterday. No adverse reactions...everything went well. Platelets were at 140...down from 850 two weeks ago. Let the fun begin!!

Your platelet count was 140,000 and you were still given Rituxan?

Yup. 858,000 to 140,000 in 2 weeks...definitely trending downward quickly...probably 10,000ish next week if it doesn't kick in. Wouldn't be surprised if nplate and Rituxan next week...we'll see...

I certainly wouldn’t have started a drug like Rituximab with a normal count or any drug for that matter.
I am amazed your haemo even considered it. Evidence based protocols are in place for a reason.
Rituximab can take a while to kick in. If your count does drop and you inject Romiplostim again resulting in an upward count you will have no idea if the Rituximab is working.

I am surprised you were given rituxan with that count! I don't know of anyone who has treated with a normal count [and some labs have 140k as in the normal range].
And as mrsb mentioned, rituxan can take a bit to kick in so if you are given another treatment and counts increase you won't know which one did it. Are you happy with the this treatment?

My counts started going up with the first dose. By the time the fourth rolled around, I didn't think I'd get it. I did, but I was surprised. At 140, I'd hope I wouldn't get it.
Good luck with your treatment!

I'm happy with the approach. Get Rituxan in for hopeful long term treatment. Since nplate will artificially boost levels if needed, once I'm off it, I'll know if levels are being maintained with the Rituxan. Makes sense to me.

You are of course entitled to take risks but I don’t agree with what you are doing.
You do realise that because of the Covid 19 pandemic you will have to shield and to stay in complete self isolation now you are on Rituximab.
I trust your vaccination status was checked prior to starting Rituximab.

Hi Mrsb, Being someone who does best without B-cells, I have been reading about biologics like Rituximab and Covid-19 risk. There isn't much, but I found this: risk stratification guide for rheumatology
It states that only on one biologic shielding isn't necessary. Since there isn't much information to be found regarding this I'm not sure how much I do or don't believe this. Have you seen this? What do you think?

I understand the risks of being on Rituxan but will not confine/isolate myself. I will be as careful as I can while living my life as "normally as possible" - whatever that means these days. I cannot and will not live in fear. I truly appreciate all of the insight and advice that you all have and hope to continue to learn from everyone.

Good to hear. Completely agree with you.

b2h
There won't be much information because Covid 19 is so new. Over here in the UK you would be classed at risk and have to shield. Our guidelines state "There is concern that immunosuppressant drugs and rituximab increase risk of COVID-19 infection and these should be avoided in new or relapsed patients during the COVID-19 pandemic if possible"

SFOG
I don't expect you to live in fear but that comes across as a selfish attitude; you have every right to put yourself at risk of contracting Covid but you do not have the right to risk passing it on to others. You may get it very mildly, not be aware you have it and pass it on to people it could kill.

Thanks Mrsb, I appreciate your response. Since the beginning of the year I have been masking and keeping distance as best I can, but lately have been more concerned and holing up more.

You may get it very mildly, not be aware you have it and pass it on to people it could kill.

I hadn't thought about this. I mean I know it happens a lot, but thought that since I am immunocompromised, it would be more likely that I would not be a mild case. Have been thinking distancing, masking and limiting outings were adequate to protect others and myself, but perhaps you are correct. Perhaps I would not know and the mask and distance would not be adequate. Sometimes, it's hard to know what to do. Like Nsfog, I don't want to be overly fearful, but I also want to care for others and myself.
I appreciate the thoughts and expertise. Stay well ~

Lots of contributors on this thread. NSFOG, how is it going?

I think there is one piece of information that no one has provided yet. It could be rubbish, and not apply to you, or it could not. Who knows? Did you know that a fair percentage (20+ percent or so) have their ITP resolve merely by taking Promacta/Nplate for many months? Most often, at least a year kind of thing.

What surprises me looks like it surprises you too. That your counts went to 329 after 4 weeks on Nplate. Then counts went to 850 after 2 weeks on it. That's a big increase, a big improvement, in a short period of time. I wonder if ITP may not be that big of a deal for you. That Nplate or Promacta alone for a few months may be all that is required.

My question for you would be this. What were the Nplate doses each week to get to 329 and what were the doses to get to 850? That is for example. Was the 329 a gradual dose increase, and then, the 850 was after even higher doses? Or maybe, the same dose as where you left off in those first 4 weeks?

Good luck !

I believe all the doses were max. From 6/5 to 6/25 I went from 855 to 70. On 6/25 I got my 2nd Rituxan treatment and half a dose of nplate. The thinking was since the Rituxan hadn't yet kicked in after 1st treatment, Dr didn't want to chance another big drop off in case Rituxan still doesn't kick in. 3rd treatment scheduled for this week....we'll see what happens.

Had 4th Rituxan treatment yesterday...levels at 329! Last nplate was 2 weeks ago (50% dose). I'm optimistic that the 329 is from the Rituxan kicking in. Retest in 2 weeks...fingers crossed!

One would think so NSFOG.

Would it be fair to say that you respond to steroids, or, not sure because you've always had IVIG along with steroids?

I had steroids when 1st diagnosed but they didn't do much. IVIG didn't do much either. Looking forward to see next week's test results...feeling positive!