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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Migraine headaches while taking Revlimid

by nanc on Mon Jul 28, 2014 1:27 am

My mom takes Revlimid and prednisone. For the past several months, starting around day 10 of the cycle, she gets severe migraine headaches that go on for days.

Does anyone else have this side effect?

We are desperate for something to stop the migraines.

nanc

Re: Migraine headaches while taking Revlimid

by Multibilly on Mon Jul 28, 2014 7:55 am

Nanc,

See Dr. Libby's comments below. Might be worth exploring a different steroid or a different delivery mechanism or dose?

... MD could try a different steroid like prednisone instead of dexamethasone to see if the headaches still occur. Other options might be to try a different mode of administration, like intravenous instead of oral.

Steroids are a very important part of the treatment regimen and efficacy will be lost if they are omitted. Therefore, it is important to find a tolerable way for you to take them.

Interestingly, Velcade can cause headaches in up to 25% of patients. Revlimid has been reported to cause headache in up to 20% of patients.

- From the Beacon forum discussion "Dexamethasone & severe headaches", started December 6, 2011.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Migraine headaches while taking Revlimid

by Beacon Staff on Mon Jul 28, 2014 9:37 am

Hi nanc,

Multibilly's link is a useful one. Just in case it's also helpful, here is a link to all previous discussions in the forum related to headaches and/or migraines. Perhaps there will be other discussions with additional information that will be helpful to you.

(The link is to search results from an Advanced Search from the forum search box on discussions with any of the keywords "headache headaches migraine migraines" in the discussion title.)

Best of luck to you.

Beacon Staff

Re: Migraine headaches while taking Revlimid

by Stann on Mon Jul 28, 2014 11:33 am

I was given Fiorinal and it worked very fast. It is a muscle relaxant, acetaminophen and caffeine. IT actually made me feel really good and gave me a little energy.

Stann
Name: Stann
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 9/11/09
Age at diagnosis: 46

Re: Migraine headaches while taking Revlimid

by iowa on Wed Jul 30, 2014 9:19 am

I did not have migraines but my head swelled from my eye upward and extreme itching. There was a red like hive from eyebrows up too. I had to take benedryl with little help and eventually stopped the treatment.

iowa

Re: Migraine headaches while taking Revlimid

by Dr. Adam Cohen on Wed Jul 30, 2014 4:48 pm

I don't often see migraines specifically caused by Revlimid, though as stated above, head­aches can certainly occur in patients on Revlimid and steroids.

I would make sure her blood pressure is well-controlled, as the prednisone can raise this and contribute to headaches. Significant anemia can also cause headaches, so correcting this if present may help. Otherwise, standard migraine medicines can be used and prescribed by her doctor.

If nothing helps, then you could consider lowering the doses of Revlimid and / or prednisone, though efficacy may be affected, so she would need to discuss this carefully with her doctor.

Hope this is helpful.

Dr. Adam Cohen
Name: Adam D. Cohen, M.D.
Beacon Medical Advisor

Re: Migraine headaches while taking Revlimid

by kerrirunnergirl on Thu May 25, 2017 12:00 pm

My husband has been on maintenance 10 mg of Revlimid 21 days on / 7 days off for the last 2 years with fatigue as the only side effects so far. Three weeks ago he started experiencing what I would say are debilitating headaches. He describes it as a sharp stabbing pain behind the right eye. The pain stops him in his tracks and he is out of commission for a couple hours at minimum. It eventually subsides with Advil (ibuprofen), time, and rest.. I have checked his blood pressure during an episode, it was normal.

We are going to the oncologist office today after I called to notify them. The nurse said she doubts it's an effect from Revlimid, but I am curious how common this is and what can be done about it.

Gonna check labs and I'm hoping they order X-ray / CT scan to rule out lytic lesion / plasma­cytomas. Not sure what else to ask for.

Any additional insights would be appreciated.

Thank you. kerri

kerrirunnergirl

Re: Migraine headaches while taking Revlimid

by Victor L on Fri May 26, 2017 12:58 am

Hello,

I have the migraine problem also, I am on maintenance treatment consisting of Imnovid (Pomalyst, pomalidomide) 4 mg and dexamethasone 20 mg, the latter being taken once per week.

My migraine commences during my 'treatment free' week each month. The warning signs are; coloured lights in my vision, loss of appetite, and the steadily increasing pain, usually on one side of the head and focused around the eye. It can last for two or more days and makes sleeping very difficult. If I do manage to sleep for a couple of hours, I will awake with the migraine still throbbing away.

I have pinpointed it to the absence of the medication in that if this unpleasant side effect coincides with the end of the treatment-free period, the pain will subside and disappear within 3 - 6 hours of starting the next treatment cycle.

I have suffered with migraine since childhood and very few painkillers have been of much help.

For me personally, going to bed during the day is rarely beneficial, and trying to occupy myself, within limits, seems to help more.

Best Wishes to All,

Victor L

Victor L
Name: Victor L
Who do you know with myeloma?: Me
When were you/they diagnosed?: 2012
Age at diagnosis: 58


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