[Anonymous]

Re: Side effects of Revlimid as Maintenance Drug

by Anonymous on Thu Aug 19, 2010 8:30 am

fortunatly im in australia we get the medication for free its called medicare you need the same thing all over the world im reminded of a michel moore doco were he took american patients to cuba a woman got her medication for $4.00 instead of $140.00 in the us is it posable to travel to cuba to get your medication??????

[Sharon Matter]

Re: Side effects of Revlimid as Maintenance Drug

by Sharon Matter on Sat Aug 28, 2010 10:34 am

I started last year with no insurance. I went on disability and state insurance in PA. My oncologist gets me my rev for $3.00 a month. I had to make myself poor to get thru this.

I started last Aug on 15 mg Rev, Dex and Velcade. I too had the sores and then herpes on my mouth from the drugs. I was 44. I then got very sick, hospitlized due to pneumonia and became septic with renal failure.

I again started the Rev and went up to 25mgs this Feb or march and back on the dex. Had to recover from the hospitalization as it took all body control from me. I can walk again and get around good but the flexibily is also gone, just not like I used to be... PT helped alot and I think after my stem cell end of month I will join some kind of physical workout program. Its good to keep moving....

good luck to you

Sharon

[mayungfer]

Re: Side effects of Revlimid as Maintenance Drug

by mayungfer on Wed Sep 29, 2010 10:07 pm

Does anyone know if Revlimid can cause a patient to start slurring their words or make them not as alert as usual or have disorganized thoughts?

[Ricardo]

Re: Side effects of Revlimid as Maintenance Drug

by Ricardo on Thu Sep 30, 2010 12:22 pm

I haven't heard of anyone experiencing word slurring or confusion as a result of taking Revlimid, but that doesn't mean it can't cause those sorts of problems. Are you taking anything else with the Revlimid that might also be the source of the problem?

I checked the prescribing information for Revlimid to see if it mentions any problems like the ones you've described. The detailed side effect information for myeloma patients is on page 5 of the document.

If you look at the side effect information, it indicates that Revlimid may sometimes (but not frequently) cause dizziness. In addition, about 12 percent more patients taking Revlimid+dex experienced "tremor" compared to the share of patients who were taking just dex.

[mayungfer]

Re: Side effects of Revlimid as Maintenance Drug

by mayungfer on Thu Sep 30, 2010 4:12 pm

Ricardo...My husband has IgG multiple myeloma. Had two SCT's one year ago (two months apart). He takes Revlimid 10mg. as maintenance drug. He was taking 15mg. but counts were getting too low. He is on anti-viral, anti-biotic, gabbapentin (sp.?) for neuropathy, vitamin D, multivitamin and his acid reflux med. The past month family and friends have noticed he doesn't seem as alert and is slurring his words sometimes. I looked up Revlimid side effects and read what you did. Saw phys. asst. yesterday at oncologist office. Seems to think it's just from possible dehydration. I question that only b/c it's gone on for one month and he is drinking more water to protect kidney function. Kidney function blood work shows he has a moderate decrease in kidney function. Just wondered if anyone else has experienced these issues. Maybe it's just the fatigue....???

[sylvia]

Re: Side effects of Revlimid as Maintenance Drug

by sylvia on Thu Sep 30, 2010 4:41 pm

Maybe your husband is experiencing what is often called "chemo brain" or "brain fog". I know a couple of myeloma patients taking Revlimid who say that the wheels just don't go round as fast any more. It makes them less attentive or have to think harder and their memory isn't as good. I don't know for sure whether it's the Revlimid or whether dexamethasone might cause the problem or just getting older or fatigue as you suggested.

[Ricardo]

Re: Side effects of Revlimid as Maintenance Drug

by Ricardo on Thu Sep 30, 2010 4:53 pm

Hi mayungfer,

I wonder if the problem is the gabapentin that your husband is taking for peripheral neuropathy. Gabapentin is the generic name for the brand name drug Neurontin. If you read up on it, you'll find out that it originally was developed as a treatment for epilepsy. Eventually, it started to be prescribed to treat pain related to shingles and peripheral neuropathy.

Now, if you ask me, it shouldn't be surprising that a drug designed to treat epilepsy sometimes has side effects related to concentration and other mental functions. And, in fact, here is what the Wikipedia article on the drug says about its side effects:

Gabapentin's most common side effects in adult patients include dizziness, drowsiness, and peripheral edema (swelling of extremities); these mainly occur at higher doses, in the elderly. Also, children 3–12 years of age were observed to be susceptible to mild-to-moderate mood swings, hostility, concentration problems, and hyperactivity. ... Gabapentin should be used carefully in patients with renal impairment due to possible accumulation and toxicity. [underlining added]

You can read more about the side effects the drug has in the prescribing information here. If you're like me, you'll probably have to look up the meaning of some of the words. But, when I read through the list of side effects, there were a lot of things like sleepiness, dizziness and tremor that make it clear that this drug can influence how your husband's "wheels go around" (to quote sylvia).

Maybe your husband should switch to something else to treat any pain related to his PN.

Good luck!

[jennifrp]

Re: Side effects of Revlimid as Maintenance Drug

by jennifrp on Thu Sep 30, 2010 5:23 pm

I started Rev about a week and a half ago and the side effects have been fairly minimal except that I've found myself feeling depressed. Has anyone else had that side effect from it?

[trainier2020]

Re: Side effects of Revlimid as Maintenance Drug

by trainier2020 on Thu Nov 04, 2010 12:55 pm

I am on Revlimid to get my multiple myeloma under control again before my allo sct. I have been on 25mg for 11 days with 40mg Dex once a week. I take the dex on Saturdays, so for three days I feel really awesome! Almost normal. I love it! Then I come down from the dex and back to the fatigue and malaise. I have experienced diarrhea (imodium helps), waves of nausea and dry heaves (occasionally) and an itchy rash on my face, check and back, drives me crazy. I have not had labs done since I started this treatment, I go back to MD Anderson next week, we'll see what my IGA level is all about then.

I have also experienced some weird out of body feelings. Nothing huge or worrisome, just weird heady feelings.

I am ready to get this show on the road and move onto another chapter in my life. I want my sct to be successful and I want to go back to work desperately. I want my life back!

Are you as sick of your disease as I am?!!!

[Shirley Pike]

Re: Side effects of Revlimid as Maintenance Drug

by Shirley Pike on Fri Nov 12, 2010 1:08 pm

I will soon begin three years of maintenance chemo alternating Revlimid and thalidamide every other month with dex and also weekly low doses of Velcade and malfalin. I have had five rounds of heavy combo chemo and two auto stem cell transplants within the last 7 months. I began noticing tightness in my legs and considerable reduction of flexibility, along with pain and achiness that is fairly nonstop early on in my treatment. I did not have it when I was just taking Revlimid and dex for two months prior to getting the heavy chemos for stem cell harvest and transplant. I previously practiced yoga and was quite flexible. I now cannot even sit cross legged comfortably. After sitting for a length of time, I am very stiff and it is hard to get my muscles working. I have complained and questioned my oncologists here at home and at the Multiple Myeloma Institute for Research and Therapy in Little Rock and no one has given me a decent answer as to why or been able to help much. I recently started very gentle yoga stretches and that seems to help a little. I think ibuprofen perhaps helps a bit more than naproxen. I also take a fairly low dose of oxi around the clock (20-30mg per 24 hours with an extra 5 for breakthrough at night) and am still bothered by this leg pain almost more than the pain in my low back/hips from lesions. Does anybody have any idea what causes this and how to address it?
My doctors sure seem to be clueless.
Shirley