About to start a Rituxan Journey

Well, after 2 rounds of steroids since being diagnosed 9/17/20, I would see improvement in count with the first run maintaining 50's and 70's after the second steroid cycle. I would get 2 months steroid free then numbers start coming down slowly, but steadily. I'm sitting at 29 as of Thursday. Had my follow-up visit with my Hematologist and he wants to start Rituxan. No schedule yet, but they are starting the insurance filing and approvals. He thinks it will be a couple weeks. The plan is to give me dexamethasone through IV along with the Rituxan. Oddly enough the most stress I'm feeling over this is the dexamethasone impact on my blood sugar being type 1 diabetic. Fingers crossed this works.

Hi sleev-les- You know you don't have to do Dexa along with Rituxin if you think it would be detrimental to your health. The standard dose of dexy is 400mg I believe, I did 200mg instead when I did Rituxin. Even that amount was very hard on me though it did push my counts up. I will never do it again, it caused sleepless nights, hearing voices, depression- it wasn't worth it.

My hematologist advised that I do not take Rituxin during the pandemic. I have been vaccinated and he said it would wipe out the B memory cells which would wipe out my vaccine. I don't believe a vaccine will work after you get Rituxin either for 6mos to a year after. So with Covid, Rituxin can leave you very vulnerable.

Another option is one of the TPO drugs, Promacta or Nplate. They are 80% effective in raising platelet counts (rituxin is only 50-60%) to safe levels and they don't suppress the immune system. Plus some lucky people go into remission when on these drugs.
Good luck with whatever you choose!

Sleeve-yes
Over here the UK ITP Association issued the following "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." At the start of the pandemic is also said that patients who have received Rituximab and steroids or Rituximab + diabetes should consider shielding. This was however issued pre vaccination implementation.
www.pharmatimes.com/web_exclusives/Impact_of_immunosuppressants_on_COVID-19_vaccine_response_1372703 This is an interesting article. 

I'm doing rituximab every 12 weeks for lymphoma and have made no response to the vaccine. So I'd second what poseymint says and try something that doesn't affect the immune system. I don't understand why doctors are suggesting ritux and heavy duty steroids at this time.

JJ- What vaccine did you have? Did you have any side effects when you got your second dose? Sorry to hear you have no antibodies from the vax. I had heard that Rituxin would do that but hadn't heard any personal stories, so thanks for the good information. I guess you must try to surround yourself with healthy vaccinated people. I'm trying to do that along with wearing a mask, sometimes a double mask. Take care, stay well everyone.

poseymint wrote:

Hi sleev-les- You know you don't have to do Dexa along with Rituxin if you think it would be detrimental to your health. The standard dose of dexy is 400mg I believe, I did 200mg instead when I did Rituxin. Even that amount was very hard on me though it did push my counts up. I will never do it again, it caused sleepless nights, hearing voices, depression- it wasn't worth it.

My hematologist advised that I do not take Rituxin during the pandemic. I have been vaccinated and he said it would wipe out the B memory cells which would wipe out my vaccine. I don't believe a vaccine will work after you get Rituxin either for 6mos to a year after. So with Covid, Rituxin can leave you very vulnerable.

Another option is one of the TPO drugs, Promacta or Nplate. They are 80% effective in raising platelet counts (rituxin is only 50-60%) to safe levels and they don't suppress the immune system. Plus some lucky people go into remission when on these drugs.
Good luck with whatever you choose!

I believe they are doing 100mg of Dex.  To date, I have not had any major side effects to steroids so I feel lucky that I have tolerated those in the interim.  Fingers crossed that it will be the same.  I asked about TPORA's prior and my doc didn't want to start with those due to being younger and potential long term usage.  I also asked what are the options to give me a shot at not needing treatment so the Rituxan (if it works) gives me that shot.  I'll ask about the vax in more detail.  Their protocol has been to wait for 2 weeks after any vaccination.  Either way I will have to be mindful of immune system impacts.  I've been on the steriods enough through the pandemic and they were doing the same and I was careful in what I did so I kept risk as low as I could with COVID.  I am curious about the impact on the vaccine though.

And as of yesterday I'm on 50mg of Prednisone.  My platelets came in at 15k.  Doctor called me Saturday since I did my CBC Friday.  Same day I started noticing heavy bruising at my insulin injection sites.  

First day down (yesterday).  Platelets at start (baseline) came up to 37k due to being on Prednisone for the 3 days.  No adverse reactions to Rituxan so my total chair time was 5.25 hours.  First hour was hookup along with infusions of Benadryl and Dex (10mg).  Remainder was Rituxan time.  I go each Monday to check on labs in prep for the next infusion each Wednesday.  Still keeping fingers crossed.

Poseymint, I had the Pfizer jabs and no side effects at all. 

Round 2 done this past Wednesday.  Counts are 160 this week.  I'm sure it has to do with the steroids as well, but I'll take it for now.

So a little Rituxan update.  After my last post, my pred was dropped from 40mg to 20mg.  Body never responds well to a drastic drop like that and was concerned.  Of course the next week platelets dropped to 33k.  We have held 20mg since then.  The week after which would be the 4th week of Rituxan they went up to 58k.  Still held 20mg pred.  I'm 2 weeks post Rituxan and platelets are at 160k again.  I'm hoping it is is Rituxan working as 20mg of pred would never get me that high.  Fingers crossed as I need to get off this pred. 

It's good to know about you. Yesterday i was about to ask you, But finally i didnt.
hope you could stop pred soon!

I had my hematologist follow-up this morning.  Down to 10mg and CBC in 2 weeks.  dosage is definitely going down so will be off sooner than later.

Sleev-les
Make sure you have a slower taper once you get below 7.5mg/day 

Good news!!

mrsb04 wrote:

Sleev-les
Make sure you have a slower taper once you get below 7.5mg/day 

Yup.. Once I get to 10, it then only goes by 2.5mg each drop.  The doc always tries to get me as tapered as quickly as possible being diabetic and the he// that prednisone plays on my blood sugar.  Even so, we figured out that I need an initial slow taper until my body responds to the pred then we can go a little faster until the 10mg mark.

Platelets 163 this past week.  Still holding

Fantastic!!