Just started Revlimid in February

[Donald Strong]

I was wondering how long it takes for revlimid to show a positive effect? My wife was on the drug eleven days before she had to stop because of side effect – rash – Now she is taking the dosage every other day. I heard that it can take up to 4 to 6 weeks before any noticeable effects can be seen in your RBC. I would like to hear from anybody that has any knowledge on this matter.

[sugarwhale]

Hello, Don!
Welcome to our Forum! You’re one of us now! Actually you and I are neighbors! See my hometown below!
My mom started 5 mg of Revlimid 3 weeks ago. Our doctor says she is doing fine and will increase the dosage to 10 mg next week. She has really had a hard time with her RBC plunging though! Other than that the other symptoms (e.g. itching) have gone away. Our doctor says that Revlimid takes THREE MONTHS to work. Now, hopefully, things will get better before then. We just don’t know.
I put a question here a few days ago; you might read the 4 replies I received. Your wife and my mom are in the same boat. I’ll keep my eyes on the Forum, and I’ll let you know of any change in my mom.
~~~ Janet

[Naomi]

Hi Don:
I started revlimid 11/7/03. Took 10mg for 15 days and had hives. Stopped, counts went down, finally back on 12/16/03. Had last tx on 12/8/03. Went back to 10 mg 1/05 and have been on it since. Took about 4 weeks for me, but had problems at first. Any questions, don’t hestitate to contact.
Naomi

[stacey]

Don,
Just thought I would give you another data point. It took six weeks of a daily dose of 10mg of revlimid before I saw positive trends in my red, white, platelet and hemoglobin counts from the revlimid. Up until that time, the drug had depressed all those counts, and I had required repeated transfusions to try to keep my hemoglobin from dropping too low. At the six week point, all my counts shot up, and I became transfusion independent from that point on. My doctor also decided to lower my dosage to 5mg daily at about that same time.
-Stacey (5q- MDS)

[Rackon]

My dad hopes to start on Revlimid this month. His hemotologist told us that, based on his experience with Revlimid, we should probably know within 4-6 weeks if it is working.

For those of you taking Revlimid – have hives and rash been the most obvious side effects? Although dad’s RBC gets low, his WBC and platelets levels are normal.

BTW…Just got a call from the pharmacy this morning. The cost is breathtaking but, thankfully, once we survive the deductible and the infamous Medicare Part D “donut” hole it appears Medicare prescription insurance will cover 95% of Revlimid cost.

[sugarwhale]

Dear Rackon–and the rest of y’all!
You asked about other side effects of starting revlimid. They have been very minimal for my mom. She HAS had muscle cramps and she DID have itching. However, after the first couple of weeks, these symptoms faded into oblivion. The big bad symptom was that her red blood count went catapulting downward!
The good news is that today, for the very first time, my mom FELT BETTER and had MORE ENERGY!! Yippee! As I write this, she has driven to Walmart to SHOP! I am cautiously optimistic; at very least, I can tell you that she’s certainly no worse! I’ll keep everyone posted!
~~~ Janet

[Carl]

Rackon,

The best site I have found for the side effects of Revlimid is the Celegene site: http://www.revlimid.com/medguide.aspx

I have experienced many of the side including low WBC, RBC, platelets, itching, diarreah, tiredness and a nasal infection. My Oncologist has temporarly suspended the 10 mg of Revlimid until my platelets come up some. He says people react differently to the drug and he will restart the drug at 5 mg as soon as my platelets recover to 50,000. I am also taking Neupogen to raise my WBC count. BUT, I am NOT giving up.

[Rackon]

Thanks everyone. All info is much appreciated.

I have been on the the Revlimid website – a lot!

Our oncologocal hematologist has already advised us that the rbc/wbc/platelets can drop and that he will be monitoring dad closely. Dad is already very tired so fatigue is a worry. His appetite is not good and he sometimes gets constipated to I have no idea how Revlimid will affect his GI tract.

We’ll find out soon.

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