ITP secondary to CLL TX hi-dx dexamethasome Re... - CLL Support

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ITP secondary to CLL TX hi-dx dexamethasome Response

cyclist123 profile image
11 Replies

I was treated with 4 X 40 mg dexamethasome and had labs on day 5 (cbc, cmp). Platelet count went from 23 to 50 with a somewhat increase in lymphocytes. No discernable change in kidney/liver values, and a slight drop in neutrophils.

This study: 'High-dose dexamethasone vs prednisone for treatment of adult immune thrombocytopenia: a prospective multicenter randomized trial 2016' talks about response rates to this protocol.

Has anyone had similar results to mine after the first round of dosing? Another response after additional doses?

Thank you

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cyclist123
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11 Replies
Shepherd777 profile image
Shepherd777

Yes, we had a jump in glucose from 85 to 135 and the WBC jumped as well. We were advised to wait until ten days after the pulse steroid dose to do blood work. We did and it dropped back to the previous numbers. In addition my husband's PSA jumped from 4 to 24 during two weeks of a daily dose of dexamethasone treatment for his covid. They told him to retest in 3 months and he did and it dropped to 4 again.

cyclist123 profile image
cyclist123 in reply toShepherd777

Thanks for the reply. Glad his numbers restabilized. May I ask what specifically the steroids were used to treat? Covid? not CLL related?

Shepherd777 profile image
Shepherd777 in reply tocyclist123

Dexamethasone

cyclist123 profile image
cyclist123 in reply toShepherd777

Yes, thank you. Was the dexamesasome used to treat something that was related to CLL? lowered Platelets? or lowered hemaglobin? or in conjunction with a specific CLL treatment?

Shepherd777 profile image
Shepherd777 in reply tocyclist123

The steroid was used to reduce inflammation in my lungs and heart because the covid-19 was inflaming these major organs,

cyclist123 profile image
cyclist123 in reply toShepherd777

oh hope you are better!

GeriGi profile image
GeriGi

yes, I’ve had dex for ITP and Ritixan.

cyclist123 profile image
cyclist123 in reply toGeriGi

GeriGi how is it going for you? How did the dex and rituxan work for you?

GeriGi profile image
GeriGi in reply tocyclist123

Well dex works, but side effects are not the greatest! Ritixan has help my counts above 100 for well over a month now. Just immune compromised and dealing with recurrent UTIs. Hoping all works for you. Keep me posted.

Luap001 profile image
Luap001

There is an article in the journal Leukemia from May of this year titled: Ibrutinib in combination with rituximab is highly effective in treatment of chronic lymphocytic leukemia patients with steroid refractory and relapsed autoimmune cytopenias

Corticosteroids can invite opportunistic infections and the degree of risk depends on the extent of your CLL-related immune deficiency.

You may want to ask your doctor about the infection risks and what if anything could be done to manage those. For example, might some form of prophylaxis be advisable? Otherwise, your doctor could likely access the above mentioned article and it may offer an alternative treatment option if it is compatible with your overall treatment plan.

Hope this helps!

cyclist123 profile image
cyclist123 in reply toLuap001

Thanks for the article. I have seen instances where front line autoimmune treatments have not held and then people went on to CLL tx with success. Doctor (CLL specialist at major university hospital) seems to think that immunosuppression is gone soon after hi dose dexamethasome is stopped tho I don't quite understand his reasoning with steroid half life after even one series. I think multiple studies have pointed to a 33% sustained CR with this dex protocol. That said I'd be all for a prophylactic. From my experience wih this Dr he'd likely say 'try it' if it's not contraindicated.

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