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questions about new q5 detetion diagnosis

Home Demo forums Patient Message Board questions about new q5 detetion diagnosis

Viewing 2 posts - 16 through 17 (of 17 total)
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  • #57129
    Lee Warner
    Participant

    Hello Tom,
    Revlimid rash caused my husband to stop taking the 10 mg dose. Recently his ocologist, with agreement from a Mayo hematologist, recommended 2 1/2 mg taken with a “cocktail” of Pepcid, Claritin, and L-Lysine. If that low dose can be tolerated without rash for a couple months, they will increase to 5 mg and continue the “cocktail” remedy.

    Two years ago this was not offered here as a solution; however, there has been some success with low doses and remedies to stave off the rash. What they want to avoid with Revlimid is Stevens-Johnson syndrome caused by Revlimid (which is Lenalidomide) and can start this life-threatening skin disease. Catch it soon!

    It might be worth a try at a low dose. If you’ve exhausted other treatments– Vidaza/azacitidine, Procrit/Retacrit, Aranesp, and whatever other remedies recommended by your oncologist and hematologist. I’m advised the next step after chemical failures is packed red blood cell transfusions. That comes with risk: antibody rejection, infection, and later on iron overload. Careful caretaker monitoring and diligent observation by doctors.

    This disease is troublesome, but people can live good lives for quite a long time. Each remedy gives the patient a few years or so. I hope this information helps.

    #57130
    Tom Nelson
    Participant

    Thanx Lee. I am coming up to 3 months on the 2.5 mg of Revlimid. Tried 5 mg 4 years ago, but rash stopped the program after 2 months. Hgb down under 8, so we are retrying the low dose Revlimid. Rash started after 2 months. Am tolerating but bothersome. If Hgb starts rising, would like to stay on the Revlimid, maybe every other day. Of course, it also depends on the ability to obtain a copay grant. Did have a HGB below 7. and had a unit of PRBC, which brought energy level back up. Will have draw on Thursday, Aranesp shot on Friday and Dr. visit next week. Fingers crossed. Wil mention the cocktail.
    T

Viewing 2 posts - 16 through 17 (of 17 total)

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