My treatment journey began today with the dex, Velcade and I will take the Revlimid tonight. In June I was given a trial dose of dex at 40mg a day for 5 days and I had severe headaches. I was hoping the reduced dose with my RVD treatment (20mg on day of Velcade and day after) would make a difference but no luck --severe headache. I have taken Tylenol (they said no motrin/advil products) and that does not seem to make any difference. I would appreciate any advice and/or suggestions.
Thanks,
Carol
Forums
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carolc - Name: carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/11
- Age at diagnosis: 54
Re: Dexamethasone & severe headaches
continue to try a lower dose of dexamethasone, the standard dose now for RVD is only 20 mg of dex; either 20mg the night of Velcade or 10 mg the day of Velcade and 10 mg the next morning; 20mg at once just works better as to my monthly blood results for me than the split dose but that will vary for each person; I would suggest taking the tylenol when taking the dex and then every 4 -6 hours regardless for 24 hours to see if that would minimize the headaches
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bond007
Re: Dexamethasone & severe headaches
When I was sick I was gettting frequent migraines, so I probably had them on Dex. Can't remember it's been a while! 
I'm sure I probably took a few advil migraine liquid gels. When you have such pain you need a pill that works. Tylenol does nothing for migraines. Talk to your doctor and see what they recomend. The reason they say no is because of the bleeding risk (if you have ulcer or stomach issues etc.) Have you tried an ice pack on the forehead (that is where I get pain). It helps somewhat. Also try the back of your neck. Drink lots of fluid, turn the the lights a bit lower (Dex also made my eyes sensitive which can trigger headaches for me)
Good luck
I'm sure I probably took a few advil migraine liquid gels. When you have such pain you need a pill that works. Tylenol does nothing for migraines. Talk to your doctor and see what they recomend. The reason they say no is because of the bleeding risk (if you have ulcer or stomach issues etc.) Have you tried an ice pack on the forehead (that is where I get pain). It helps somewhat. Also try the back of your neck. Drink lots of fluid, turn the the lights a bit lower (Dex also made my eyes sensitive which can trigger headaches for me)Good luck
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Alyssa
Re: Dexamethasone & severe headaches
Hi Carol,
In general steroids are not known to be major causes of headache, but your story is certainly suggestive. Your 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.
Best of luck from Seattle !
In general steroids are not known to be major causes of headache, but your story is certainly suggestive. Your 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.
Best of luck from Seattle !
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Dexamethasone & severe headaches
Thanks so much for the responses. Based on some other input, I tried something different yesterday. I did not take the dex in am as suggested, I took late in evening with Revlimid. Slept all night and today only a dim tolerable headache. Tomorrow I have Velcade again and I will again delay to pm, so it will be interesting to see if the Velcade was contributing. Thanks again and enjoy Seattle!
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carolc - Name: carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/11
- Age at diagnosis: 54
Re: Dexamethasone & severe headaches
I am not a myeloma patient, but I do have a problem with migraines. My migraine specialist believes there is a real connection between poor sleep and migraines. I wonder if the dex messing with your sleep could be contributing to your headaches.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Dexamethasone & severe headaches
I get an injection of 20 mg prior to my chemo and get instant migraines now. My face and hands go numb.
I have taken prednisone in the past for years for my autoimmune diseases, and Medrol dose packs, but now, after many years, I too am having severe migraines with dex and Medrol. So it is something that really should be looked into. :
I have taken prednisone in the past for years for my autoimmune diseases, and Medrol dose packs, but now, after many years, I too am having severe migraines with dex and Medrol. So it is something that really should be looked into. :
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Kathleen
Re: Dexamethasone & severe headaches
I'm currently on maintenance treatments with 10 mg Revlimid daily and 8 mg dex weekly. I take them 3 out of 4 weeks. A few times on my off week I have experienced mild to moderate headaches that last a few days.
I'm wondering if I might be experiencing some sort of withdrawal symptoms from either the Revlimid or dex on my off weeks. If I am, I'm also guessing that the culprit might be the dex.
Has anyone else experienced headaches on their off week while on maintenance treatments similar to mine?
I'm wondering if I might be experiencing some sort of withdrawal symptoms from either the Revlimid or dex on my off weeks. If I am, I'm also guessing that the culprit might be the dex.
Has anyone else experienced headaches on their off week while on maintenance treatments similar to mine?
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Dexamethasone & severe headaches
Carloc,
I never had any headaches that I would attribute to dexamethasone. I am not currently taking dexamethasone, but last time I did, it was for about a 5-month period. Near the end of the period, I started noticing numbness and tingling in my head, face, and upper arms and shoulders on the day I took the dexamethasone. This seems similar to what Kathleen is describing she experienced, but without the migraines. This seems to be a pretty rare side effect though. I have seen very few people mention anything like this, and my endocrinologist said it was not something she was familiar with.
While I was researching and looking into the side effects of dexamethasone, I saw the other big group of cancer patients that routinely take high-dose dexamethasone are those with brain cancer. This seems to be done to reduce brain swelling. I am not a doctor, but this suggests that dexamethasone has some effect on the brain, but I would think reducing swelling would help prevent headaches for most people.
DallasGG,
I believe you very well may be experiencing some kind of withdrawal effect. When I was taking dexamethasone for about 5 months as mentioned above, it was at 40 mg a week initially and then 20 mg. Near the end of the period I was taking it, I certainly started to feel like crap overall a few days after taking the dexamethasone. After long-term use, it seems dexamethasone can start to affect the body's hormonal and endocrine system.
I am not a doctor or specialist in this area, but I did see an endocrinologist myself who ran a bunch of labs which indicated why I was feeling the way I did. Maybe an endocrinologist can help you and others who are having similar issues with dexamethasone. But, as I learned with my endocrinologist, while I learned what it was dexamethasone was doing to me, being able to do something about it is another matter. And, as Dr Libby said, there are a lot of drugs that have side effects and it can be hard to sort out just what is doing what when taking a lot of them.
I never had any headaches that I would attribute to dexamethasone. I am not currently taking dexamethasone, but last time I did, it was for about a 5-month period. Near the end of the period, I started noticing numbness and tingling in my head, face, and upper arms and shoulders on the day I took the dexamethasone. This seems similar to what Kathleen is describing she experienced, but without the migraines. This seems to be a pretty rare side effect though. I have seen very few people mention anything like this, and my endocrinologist said it was not something she was familiar with.
While I was researching and looking into the side effects of dexamethasone, I saw the other big group of cancer patients that routinely take high-dose dexamethasone are those with brain cancer. This seems to be done to reduce brain swelling. I am not a doctor, but this suggests that dexamethasone has some effect on the brain, but I would think reducing swelling would help prevent headaches for most people.
DallasGG,
I believe you very well may be experiencing some kind of withdrawal effect. When I was taking dexamethasone for about 5 months as mentioned above, it was at 40 mg a week initially and then 20 mg. Near the end of the period I was taking it, I certainly started to feel like crap overall a few days after taking the dexamethasone. After long-term use, it seems dexamethasone can start to affect the body's hormonal and endocrine system.
I am not a doctor or specialist in this area, but I did see an endocrinologist myself who ran a bunch of labs which indicated why I was feeling the way I did. Maybe an endocrinologist can help you and others who are having similar issues with dexamethasone. But, as I learned with my endocrinologist, while I learned what it was dexamethasone was doing to me, being able to do something about it is another matter. And, as Dr Libby said, there are a lot of drugs that have side effects and it can be hard to sort out just what is doing what when taking a lot of them.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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