[sgoodman]

Forgot to say – I am on 10 mgs and it took 4 months to respond, so you may want to discuss whether a higher dosage would make sense?

[sgoodman]

I am 28 days on and 7 days off and understand that this is common.

[sgoodman]

I am non-5q and have been on revlimid since March, 2005 and now am stable thanks to this drug. The side effects are moderate, but much better than thalidomide. One note-it can take several months to show any effect and there may even be a decline during the first few months before it begins to work.

[sgoodman]

I have not switched to a lower dose but would only caution that Revlimid can take some time to work (10 mgs, 4 months for me). Of course do what you and your doctor agree is best for you.

[sgoodman]

Tony,

I have been on Revlimid for over three years and it took about three to four months to show a decent improvement. I am not 5q and my insurance has always covered it. You should appeal that determination and provide as much information on the drug as you can, articles, etc. Ask to see all records involved in the denial. Good luck.

[sgoodman]

Pam,

Thanks for the post. It has been over 7 years since my diagnosis (7/01) and my platelets have declined to normal levels. The doctors think that it was just an anomolie rather than a symptom of thromboctytosis.

Glad you are doing well.

[sgoodman]

I have been on revlimid for over 3 years and am non 5q. It has worked fairly well and I have needed no other treatments. In the beginning, the fatigue and other side effects were more significant, although they have continued on and off. I would suggest that you try to use it for several months before giving it up, since it took four months to begin to work for me.

[sgoodman]

In response to czaring, I have been on revlimid for three years and had never had a tranfusion and am not 5q.

[sgoodman]

You do not need to be tranfusion dependent to receive revlimid. I have been on it for three years and have never had a transfusion and my insurance has covered it with no issue. Just note that it can take months for your counts to begin to increase. Good luck.

[sgoodman]

Kami,

You may want to talk to the doctor about increasing to 10 mg. I was on 5 mg with little reaction after 3 months and then switched to 10 mg and have been on that since 3/06 with stable results. There has been no difference in the side effects.

[sgoodman]

My doctors have said that a bone marrow biopsy is the way to deterine the level of fibrosis, so you would get one periodically to determne if your levels have changed. Good luck with your treatment and I wish you the best.

[sgoodman]

Of course every case is different, but I have MDS with severe fibrosis (since 2001)and am on Revlimid (since 2006). I have not been told that the Revlimid will help the fibrosis, but my doctors (at Johns Hopkins) have also indicated that there doesn’t seem to always be a direct link between the counts and the level of fibrosis, i.e. the fibrosis can increase without affecting the counts. Another thing for you to discus with your doctor with whether you truly have MDS or have myelofibrosis, a closely related but different disease that presents with alot of the same symptoms as MDS. It also possible to have both. Hope this helps your discussion with your new doctor.

[sgoodman]

I have not had expereience switching from Revlimid to Thalidomide. I switched from Thalidomide (300 mg)to Revlimid (10 mg) and would caution that I found the Thalidomide side effects to be significantly worse than Revlimid side effects at the dosage necessary to produce effects. You may want to talk to the DR about trying to move up to Revlimid 10 mg to see if that works.

[sgoodman]

Kirby and Naomi,

What level dose are you taking? Thanks for the info.

[sgoodman]

I am a 41 year old woman with MDS/myelofibrosis and I have worked full-time since my diagnosis in 2001. I have ongoing fatigue but have had no transfusions. If your work place is flexible,you can do it if you choose. At some point, I may make the choice to go part time, given the likelihood of a transplant, but have not yet.

Good luck.

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