itp response to first hi-dx dexamethasome

[cyclist123]

New here. I had a cbc, cmp yesterday after 4 X 40 mg dexamethasome. Platelets went from 23 to 50 with some elevated lymphocytes and somewhat decreased neutrophils. Is this response similar to what others have experienced? No marked effect that I can tell on kidney/liver values. Thank you.

[BeccaUnit]

The routine from ER to recovery that has worked best for me has always started with Dexamethasone. I get an injection the moment my CBC confirms I am crashing, and then do a 3-4 day oral dosage of 40 mg. I start promacta at this point.

I either get admission or if my count was 30ish, sent home- just to turn arround and be in my hematologist oncologist office for IVIG or Rotuxin infusions starting asap.

It's a rough ride, but I respond better to dex, and have less drastic relapses in treatment when we go hard. Prednisone just doesn't cut it for me, I get all the garbage reactions and no real benifit from long term use.

I can not stress this enough, get a diabolical amount of vitamin c in you. NOT for the "immuno benifit " everyone wants you to believe, but for iron absorption. Your going to chew through iron at such a rate your body could cannibalize organs and soft tissue to produce platelets and red cells, attempting to keep up with the destruction. If you are not aware, iron has to have vitamin c to be absorbed for blood and platelet production.

Take suppliments, eat iron rich foods, and become the biggest consumer of vitamin c on the market till this passes.

If treatment makes you nauseous, lean on peppermint- it doesn't completely relieve the nausea, but it will help make it manageable enough.

You got this, things are going to happen fast and will seem way too overwhelming, but you got this.

I think I have been in and out with treatments 7 times? (I actually lost count over 22 years) There are a lot of us out there, and you can post anytime if you need someone to share perspective or experience.

Best wishes, and Merry Christmas (?)

Becca

[cyclist123 in reply to BeccaUnit]

Thanks for the reply and all the info. I waited to post because I had a second cbc and the platelet increase I got the day following the 4 X 40mg dex ( now another week out) has not increased. It remained the same.

I have looked at a couple of studies that showed, with another round of dex, a few more people achieve a good response. I'm not sure I would be one of those or if it's worth more steroids.

Waiting to hear what the hem/onc says.

In terms of vit c, iron...I do get ferritin checked routinely. I will look into Vit C more.