[KarenaD]

Re: How long does it take Revlimid to work?

by KarenaD on Thu Oct 25, 2018 7:24 pm

I'm very encouraged by your response, Coachhoke. It is clear that I have to be patient and wait at least 3 cycles or so before I can expect a response. I hope my doctor agrees. I also have IgG kappa myeloma, although mine doesn't seem to be as indolent as yours. You are indeed lucky; at least for someone with this disease. Thanks so much for your feedback.

Karen

[KarenaD]

Re: How long does it take Revlimid to work?

by KarenaD on Fri Jan 04, 2019 5:49 pm

I just wanted to give an update on my experience with Revlimid and dex. Since 10 mg of Revlimid didn’t seem to have an impact on my (admittedly) low but rising M-spike, my doctor increased my dosage to 25 mg Revlimid in the middle of November. At my blood draw at the end of November (after 2 weeks on the higher dosage), my M-spike had slightly reduced; it was 0.8 g/dL, or 0.05 g/dL lower than the previous blood draw. At my blood draw at the end of December, my M-spike had gone down to 0.7 g/dL. So it has essentially taken 3-4 months for the Revlimid to start reducing my M-spike, and this includes an increase in my Revlimid dosage.

Thankfully, I seem to be tolerating the highest strength of Revlimid quite well. Other than increased fatigue, I haven’t noticed any other really negative side effects so far.

I wish everyone here improved health and much happiness in 2019!

[tpt]

Re: How long does it take Revlimid to work?

by tpt on Fri Jan 04, 2019 9:11 pm

Hi,

For me, it was the complete opposite.

I had biochemical relapse in May 2018, with my kappa serum free light chain level steadily rising and hovering around 150 mg/dL. After two cycles of 25 mg Revlimid and 20 mg dexamethasone, my kappa level went down to 20 mg/dL-ish. Unfortunately, after the third cycle my numbers went a different direction, and by the end of the fifth cycle, with the same dosage, my kappa level has risen to close to 100 mg/dL.

I am on my sixth cycle and I will know the result next week. Hopefully it will stabilise.

I am wondering how common it is to have a double inflection point with Revlimid.

I wish you all well.

[john5915]

Re: How long does it take Revlimid to work?

by john5915 on Sun Jan 20, 2019 9:00 pm

I had a high dose (25 mg) of Revlimid before an autologous stem cell transplant in 2017, and have been on a maintence dose since. First it was 10 mg, and that lasted about a year, but the side effects were overwhelmning, particularly rash and itching, but also constipation. My dose was reduced to 5 mg, 21 days on and seven off, and that seems to have helped. M Protetin remains too low to measure. How long did it take to work? Based on my experience, several months. I assume it accumulates in the body.