[stacey]

Czaring,

Sorry for the delayed response. I took revlimid from summer 2004 until fall 2006 for 5q- MDS and stopped the medicine in order to try to have children. I gave birth earlier this year to wonderful twin girls. I still am off of revlimid. The only thing I took since fall 2006 was a vitamin (prenatal vitamin).

I apologize for not posting sooner, but I have not read the board in quite awhile since my girls keep me so busy! I will try to check back again sometime in the next week if you have any more questions. Feel free to send me a private message if you prefer. Best wishes-

-Stacey

[stacey]

Chojk,

Don’t think you are bothering any of us– please post as often as you want. I never had swelling of any kind with revlimid, but I did have a couple of only minor, dry (scaly), less than one inch patches of skin mainly on my upper arms which were non-bothersome. I was also initially on a 10 mg dosage.

I don’t want to overly worry you at all, and please take this with a grain of salt, but I did have some concerns about hearing of the face swelling since it sounded more like an allergic reaction and I don’t remember reading any past posts about that side effect. I googled the side effects of revlimid (lenalidomide), and a yahoo health website has swelling of the face listed under “signs of an allergic reaction” (see http://health.yahoo.com/drug/d05696a1). I would highly recommend calling your doctor’s office again to push for some kind of direction or a trip to the hospital, since they may want to temporarily discontinue your dad’s medicine– you’ll have to see what they decide to do. I do hope he starts feeling better very soon.
Take care,
-Stacey

[stacey]

You might have already seen this in the past posts, but just in case you hadn’t, I would recommend scalpicin for the scalp itch. It is an over the counter product made for scalp itch that you just apply directly. I thought it worked well, and I was also going a bit crazy from the scalp itch, so I know how your dad feels! FYI – That side effect lasted about 1-2 weeks for me and then went away. Hope that helps.

And (for Alex)– I also had problems sleeping when I was taking revlimid at night and had to switch to only taking it in the morning as well.

-Stacey

[stacey]

Alex,

There was a thread a short while back that can give you a few perspectives about the counts. Click the search button and then search on the words “Just started Revlimid”. You’ll see a topic started 3/07/06 (titled “Just started Revlimid in February”) that might be of some help.
-Stacey

[stacey]

Dear Gail,

I am saddened and so very sorry to hear of Naomi’s passing. She was the first person I ever corresponded with on this board. She was also the first person I talked to who had been taking revlimid longer than myself. I contacted her via e-mail, and she was so kind to take the time to respond to me about her experiences. She will be missed by many on this board. You have my deepest condolences.
-Stacey

[stacey]

Ed,

My own impression was that revlimid could stay in your system for up to 4 weeks after discontinuing use. This was never expressed to me by a doctor, however. It was from reading the literature concerning revlimid on Celgene’s website. There are several references related to “4 weeks” after discontinuing use of revlimid; for example, do not donate blood until 4 weeks after stopping use of revlimid, etc. I assumed the medicine could stay in your system that long after stopping its use. Hope that information helps.
Also, I’m very sorry to hear that both your wife and Carl had problems taking revlimid. I hope you are able to find success with other treatments and wish you all the best.
-Stacey

[stacey]

Naomi,
I’m sorry to hear there have been a few more health issues lately that you have had to deal with. I hope things start going better for you and you can get back into remission very soon on the revlimid.
I have a couple questions (if you don’t mind) to clarify what you wrote, because I tend to learn quite a bit from your experiences. Did you go off the revlimid in mid July? And approx. what was your hemoglobin count when you went off the revlimid — was it already lower along with your platelet level OR was it still normal, then suddenly dropped after you went off the revlimid requiring your two RBC transfusions due to the anemia? I was trying to figure out if the anemia was a direct result of your stopping the revlimid and, if so, about how soon after it showed up. Thanks for the info.
Best wishes,
-Stacey

[stacey]

Lydia,

I have not experienced the spine tingling, however, I do have occasional abdominal pain (accompanied with constipation/diarrhea). The abdominal pain started well over a year ago, and at first I did not realize that the pain might be associated with revlimid — I thought instead that I might be lactose intolerant or have some other problem.
I have mentioned this side effect several times to my hematology doctor, and then last summer I went to see my primary physician to see what he thought. He suggested adding Benefiber to my diet, since it can help with constipation or diarrhea. I still experience these problems (including the abdominal pain), but all seem to happen with less frequency since starting taking the Benefiber. In addition, the doctor prescribed Hyoscyamine tablets directly for the abdominal pain. I have only taken it a couple times (I generally try not to take too much prescription medicine along with my revlimid), but when I did take that prescription in the past, it seemed to alleviate some of the pain. Hope this helps.

-Stacey

[stacey]

Lori,

That is wonderful news about your mom!! I am very happy revlimid has been working so well for her. FYI – I also found a product that worked great for the scalp itch over the counter called scalpicin, as I had that same side effect from the revlimid about 2 years ago. I hope your mom continues to have great health!
-Stacey

[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)

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