Haven't ever been involved with one, outside of the academic setting at least, but I could imagine how it might offer an opportunity for folks to learn new things about themselves and others.
Forums
Re: Ritalin or Adderall for fatigue?
Nancy, I'm looking forward to the reading groups as well!
Haven't ever been involved with one, outside of the academic setting at least, but I could imagine how it might offer an opportunity for folks to learn new things about themselves and others.
Haven't ever been involved with one, outside of the academic setting at least, but I could imagine how it might offer an opportunity for folks to learn new things about themselves and others.
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Ritalin or Adderall for fatigue?
Hi SteveC,
While fatigue in patients with multiple myeloma should be taken seriously, I typically do not prescribe psycho-stimulants in this setting. I usually try to determine the root cause - i.e., is it anemia, chemotherapy, or the myeloma itself that's causing the fatigue? Depending on the cause and where patients are in their course makes a difference in the type of intervention that I would try.
In truth, my philosophy is that we treat the disease so that patients can live a quality life, so that if the fatigue is dragging you down, it should be discussed with and addressed by your doctor. Perhaps doses of chemo should be modified and/or anemia can be corrected. Is your mood being addressed? Exercise can often result in more, rather than less, energy.
If all of those things are considered and no progress is made, and after consultation with a pharmacist and/or psychiatrist to make certain there are no interactions or contraindications, it may be reasonable to consider psycho-stimulant use -- understanding that the majority of the data does not support its use.
Hoping you feel better soon!
While fatigue in patients with multiple myeloma should be taken seriously, I typically do not prescribe psycho-stimulants in this setting. I usually try to determine the root cause - i.e., is it anemia, chemotherapy, or the myeloma itself that's causing the fatigue? Depending on the cause and where patients are in their course makes a difference in the type of intervention that I would try.
In truth, my philosophy is that we treat the disease so that patients can live a quality life, so that if the fatigue is dragging you down, it should be discussed with and addressed by your doctor. Perhaps doses of chemo should be modified and/or anemia can be corrected. Is your mood being addressed? Exercise can often result in more, rather than less, energy.
If all of those things are considered and no progress is made, and after consultation with a pharmacist and/or psychiatrist to make certain there are no interactions or contraindications, it may be reasonable to consider psycho-stimulant use -- understanding that the majority of the data does not support its use.
Hoping you feel better soon!
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Dr. Heather Landau - Name: Heather Landau, M.D.
Beacon Medical Advisor
Re: Ritalin or Adderall for fatigue?
Thanks Dr. Landau ... your time and expertise are very much appreciated!
You have reinforced much of what was presented, in terms of decision criteria for prescribing CNS stimulants for CF, in the ASCO article I posted a link to above.
http://jco.ascopubs.org/content/31/19/2372.full
The authors of that article agree that current data do not support intervention with CNS stimulants except in certain cases where they may have benefit for a specifically defined patient. They also state that there are a number of reasons not to entirely dismiss stimulants (methylphenidate in this case) as a viable treatment for CF, reasons which relate to some of the previous study designs, as well as the heterogeneity of each patients disease; certainly a consideration for multiple myeloma patients I would think.
I should also add that a couple of multiple myeloma specialists have related to me (both from MIRT, if that matters) that, even though such stimulants are not their go-to drug for treating CF, at the same time, they feel that the option should remain on the table for consideration on a case-by-case basis.
Sounds reasonable to me!
By the way, Dr. Landau, if you have any time in your busy schedule, we've recently formed a book club here at TMB and will be reading and discussing "cancer related" books. Having a physician's perspective on such books as, The Emperor of All Maladies by Dr. Siddartha Mukherjee, and others, would be no doubt very insightful for multiple myeloma patients and their caregivers. And, who knows, maybe you might learn something as well?
Regards,
Steve
You have reinforced much of what was presented, in terms of decision criteria for prescribing CNS stimulants for CF, in the ASCO article I posted a link to above.
http://jco.ascopubs.org/content/31/19/2372.full
The authors of that article agree that current data do not support intervention with CNS stimulants except in certain cases where they may have benefit for a specifically defined patient. They also state that there are a number of reasons not to entirely dismiss stimulants (methylphenidate in this case) as a viable treatment for CF, reasons which relate to some of the previous study designs, as well as the heterogeneity of each patients disease; certainly a consideration for multiple myeloma patients I would think.
I should also add that a couple of multiple myeloma specialists have related to me (both from MIRT, if that matters) that, even though such stimulants are not their go-to drug for treating CF, at the same time, they feel that the option should remain on the table for consideration on a case-by-case basis.
Sounds reasonable to me!
By the way, Dr. Landau, if you have any time in your busy schedule, we've recently formed a book club here at TMB and will be reading and discussing "cancer related" books. Having a physician's perspective on such books as, The Emperor of All Maladies by Dr. Siddartha Mukherjee, and others, would be no doubt very insightful for multiple myeloma patients and their caregivers. And, who knows, maybe you might learn something as well?
Regards,
Steve
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Ritalin or Adderall for fatigue?
Steve,
Addiction was probably the wrong word to use for me; dependent would be the better word.
After stopping Velcade, my neuropathy was subsiding and I was reducing the amounts of morphine and Dilaudid [hydromorphone] I was taking, only supposed to take as needed. I got to the point where I went two days without taking any opiates and then found I was experiencing withdrawal symptoms, so I continued taking a minimal amount as I could stand and talked with my doctor about it. He said we would deal with it later after my stem cell transplant, as I might still need pain killers between now and then.
He was right. But I was able to quit them completely during the SCT. The nausea medication helped a great deal with the withdrawal symptoms, and it was really easy to quit at that point. There was nothing really hellish about the whole thing, except maybe for some serious constipation from the opiates -- nothing comes for free or easy I guess.
You make some points and I can see where maybe stimulants could be appropriate to counter fatigue induced from other medications, perhaps such as Revlimid. But as to your original question about stimulants to counter fatigue from myeloma and its effects, I do not see that as a good idea. As you said, treat the underlying condition that is causing the fatigue first is the best approach, just like treating the myeloma was the best thing to get rid of my screaming back pain. But if pain cannot be treated then no one should have to suffer chronic pain and long term use of pain killers is needed. But unlike pain, I see that fatigue can be the body’s way of telling you to rest because that will help heal you. Pain does not heal you. I think we are really not that far apart here.
I guess what first caught me a little by surprise with your question is that there would be anybody out there taking Ritalin or Adderall, at least under a doctor's supervision, to combat myeloma fatigue. These are FDA schedule II drugs and, to the best of my knowledge, prescribing them for myeloma fatigue would be a significant off label use. I think most doctors would be cautious about going down that path and I believe Dr. Landau’s response suggests that.
But there was the study you found, so I can see why you wanted to know more and ask this question. If it becomes medically accepted that stimulants to help with myeloma fatigue outweighs any negatives I would change my thinking accordingly.
Addiction was probably the wrong word to use for me; dependent would be the better word.
After stopping Velcade, my neuropathy was subsiding and I was reducing the amounts of morphine and Dilaudid [hydromorphone] I was taking, only supposed to take as needed. I got to the point where I went two days without taking any opiates and then found I was experiencing withdrawal symptoms, so I continued taking a minimal amount as I could stand and talked with my doctor about it. He said we would deal with it later after my stem cell transplant, as I might still need pain killers between now and then.
He was right. But I was able to quit them completely during the SCT. The nausea medication helped a great deal with the withdrawal symptoms, and it was really easy to quit at that point. There was nothing really hellish about the whole thing, except maybe for some serious constipation from the opiates -- nothing comes for free or easy I guess.
You make some points and I can see where maybe stimulants could be appropriate to counter fatigue induced from other medications, perhaps such as Revlimid. But as to your original question about stimulants to counter fatigue from myeloma and its effects, I do not see that as a good idea. As you said, treat the underlying condition that is causing the fatigue first is the best approach, just like treating the myeloma was the best thing to get rid of my screaming back pain. But if pain cannot be treated then no one should have to suffer chronic pain and long term use of pain killers is needed. But unlike pain, I see that fatigue can be the body’s way of telling you to rest because that will help heal you. Pain does not heal you. I think we are really not that far apart here.
I guess what first caught me a little by surprise with your question is that there would be anybody out there taking Ritalin or Adderall, at least under a doctor's supervision, to combat myeloma fatigue. These are FDA schedule II drugs and, to the best of my knowledge, prescribing them for myeloma fatigue would be a significant off label use. I think most doctors would be cautious about going down that path and I believe Dr. Landau’s response suggests that.
But there was the study you found, so I can see why you wanted to know more and ask this question. If it becomes medically accepted that stimulants to help with myeloma fatigue outweighs any negatives I would change my thinking accordingly.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Ritalin or Adderall for fatigue?
Eric said: " But if pain cannot be treated then no one should have to suffer chronic pain and long term use of pain killers is needed. But unlike pain, I see that fatigue can be the body’s way of telling you to rest because that will help heal you, pain does not heal you."
Eric, that statement, above, wherein you've attempted to justify a pharmacological intervention for one type of pain and not for another kind of pain doesn't make much sense.
Think about it. Pain that is, for example, associated with a patient's lumbar area but is idiopathic in origin is also one of the ways the body has of telling us to REST and to seek medical intervention, even if we can't find the precise cause.
Equally, chronic fatigue that cannot be attributed to a particular cause and thereby a specific remedy, i.e., when it's idiopathic in origin, is also a kind of PAIN wherein the patient's body is telling them to REST, and to seek medical intervention.
In short, both chronic pain and chronic fatigue are typically physiological in origin and presentation, and certainly debilitating in nature. Consequently, I fail to see why they should be regarded as somehow substantially different in the degree of suffering experienced by the patient such that medication therapy is limited for CF and not for CP.
Indeed, I would argue that the patient with CF deserves to be treated with medication therapy just as much as the patient with chronic pain from say, bone damage. What type of medication therapy may be prescribed is, obviously, up to the physician. However, I would add that when we're talking about CP or CF in the context of terminally ill patients, one would hope that the treating physician would weigh the benefits of improved QOL for these patients, regardless of the stimulant's schedule, against the limited life these patients have remaining!
Eric, there are cancer patients in this world who find no relief for their chronic fatigue regardless of how much they change their lifestyle, or how much they rest, or how much they listen to a therapist tell them they can "will away" their pain if only they work hard enough at it.
Those patients do not deserve to suffer in their very real pain any more than the patient who complains of idiopathic, lower back pain. And if the pharmacological intervention for the CF patient requires stimulants (per an oncologist's determination) for successful treatment, then so be it!
Eric, that statement, above, wherein you've attempted to justify a pharmacological intervention for one type of pain and not for another kind of pain doesn't make much sense.
Think about it. Pain that is, for example, associated with a patient's lumbar area but is idiopathic in origin is also one of the ways the body has of telling us to REST and to seek medical intervention, even if we can't find the precise cause.
Equally, chronic fatigue that cannot be attributed to a particular cause and thereby a specific remedy, i.e., when it's idiopathic in origin, is also a kind of PAIN wherein the patient's body is telling them to REST, and to seek medical intervention.
In short, both chronic pain and chronic fatigue are typically physiological in origin and presentation, and certainly debilitating in nature. Consequently, I fail to see why they should be regarded as somehow substantially different in the degree of suffering experienced by the patient such that medication therapy is limited for CF and not for CP.
Indeed, I would argue that the patient with CF deserves to be treated with medication therapy just as much as the patient with chronic pain from say, bone damage. What type of medication therapy may be prescribed is, obviously, up to the physician. However, I would add that when we're talking about CP or CF in the context of terminally ill patients, one would hope that the treating physician would weigh the benefits of improved QOL for these patients, regardless of the stimulant's schedule, against the limited life these patients have remaining!
Eric, there are cancer patients in this world who find no relief for their chronic fatigue regardless of how much they change their lifestyle, or how much they rest, or how much they listen to a therapist tell them they can "will away" their pain if only they work hard enough at it.
Those patients do not deserve to suffer in their very real pain any more than the patient who complains of idiopathic, lower back pain. And if the pharmacological intervention for the CF patient requires stimulants (per an oncologist's determination) for successful treatment, then so be it!
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Ritalin or Adderall for fatigue?
I was prescribed Ritalin for fatigue in the past before I was diagnosed with MGUS. My neurologist did not know what was causing the fatigue. I took it one night and woke up screaming with a horrible and very vivid nightmare. I thought maybe having the nightmare was a coincidence. I took it the next night, same thing, screaming with a different nightmare. Never again for me.
I was also prescribed Provigil [modafinil] by the same neurologist. Hated it. I felt jazzed up instead having more energy. When I stopped it, I went though a period of a very extreme fatigue.
I was also prescribed Provigil [modafinil] by the same neurologist. Hated it. I felt jazzed up instead having more energy. When I stopped it, I went though a period of a very extreme fatigue.
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Carolee888
Re: Ritalin or Adderall for fatigue?
Thanks, Carollee, for sharing your experience!
None of us can know how any given medication is going to effect us ... but at least you had the opportunity to give it a try!
I was reading elsewhere where a number of multiple myeloma patients had GREAT success with either Ritalin, Adderall, or Provigil after they found the dosage that was right for them.
Myself, for instance, I did 80 mg/week of dex during my RVD treatment. Loved it. The dex gave me more energy, relieved considerable joint pain that has not returned even after two years and didn't seem to bother my sleep patterns much at all. Go figger!
So, unfortunately, one can never know until they try.
Best,
S.
None of us can know how any given medication is going to effect us ... but at least you had the opportunity to give it a try!
I was reading elsewhere where a number of multiple myeloma patients had GREAT success with either Ritalin, Adderall, or Provigil after they found the dosage that was right for them.
Myself, for instance, I did 80 mg/week of dex during my RVD treatment. Loved it. The dex gave me more energy, relieved considerable joint pain that has not returned even after two years and didn't seem to bother my sleep patterns much at all. Go figger!
So, unfortunately, one can never know until they try.
Best,
S.
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Ritalin or Adderall for fatigue?
Hi Steve
I am on dexamphetamine (similar to Ritalin) for adult attention deficit & hyperactivity disorder for about 10 years before I was diagnosed with multiple myeloma. I have been on 15mg Revlimid 21 days on, one week,off, cycle for over a year and a half. Out of all my problems related to multiple myeloma, I find physical fatigue affects my quality of life most.
Unfortunately, dexamphetamine doesn't help me with physical fatigue. My little understanding of dexamphetamine is that it's a type of speed, so it stimulates the brain, makes it easy to focus, concentrate, and do difficult mental tasks, but it doesn't give me any more energy. But I still find it a useful tool.
I don't know how Revlimid affects anyone else, but by the third week my head is so thick I just want to stare at walls. Dexamphetamine definitely helps with this. If you are working and you find mentally you are struggling, or a clearer head would make a difference to the things you enjoy in life, I would recommend you talk with your doctor about trying it. After all the crap we have to go through and is still to come, take any advantage you can get. Push your doctor. I'm sure they can find ways around the system.
Regarding addiction, I don't believe you can get physically addicted, I definitely haven't. Only side affect I've had is that it affected my sleep if I took it after 4 p.m. So I usually take the last one around 2 p.m.
I did ask my specialist and doctor about drugs sportsmen illegally take to give them more energy. Their concern was that, although it would help me, they didn't know if it would also assist the cancer. The problem is that they don't know, so I would love to hear if anyone knows more about this.
You may be interested in this for a short term relief. I recently went on an overseas holiday for four weeks. Because my cancer levels were low and the Revlimid cycle finished in the middle of the holidays, my specialist said I could wait till I got home to restart treatment. This gave me an extra two weeks off, so a total of three weeks. Because of similar circumstances, I have had an extra one week (total two weeks) off before, but I found that the total of three weeks made a massive difference. I felt so much better and by the third week I had heaps more energy.
If I had known this, I would have planed a different holiday. I have been back a month but still feel better than I did before I went away.
Hope any of this helps and if you have any questions, please ask
David
I am on dexamphetamine (similar to Ritalin) for adult attention deficit & hyperactivity disorder for about 10 years before I was diagnosed with multiple myeloma. I have been on 15mg Revlimid 21 days on, one week,off, cycle for over a year and a half. Out of all my problems related to multiple myeloma, I find physical fatigue affects my quality of life most.
Unfortunately, dexamphetamine doesn't help me with physical fatigue. My little understanding of dexamphetamine is that it's a type of speed, so it stimulates the brain, makes it easy to focus, concentrate, and do difficult mental tasks, but it doesn't give me any more energy. But I still find it a useful tool.
I don't know how Revlimid affects anyone else, but by the third week my head is so thick I just want to stare at walls. Dexamphetamine definitely helps with this. If you are working and you find mentally you are struggling, or a clearer head would make a difference to the things you enjoy in life, I would recommend you talk with your doctor about trying it. After all the crap we have to go through and is still to come, take any advantage you can get. Push your doctor. I'm sure they can find ways around the system.
Regarding addiction, I don't believe you can get physically addicted, I definitely haven't. Only side affect I've had is that it affected my sleep if I took it after 4 p.m. So I usually take the last one around 2 p.m.
I did ask my specialist and doctor about drugs sportsmen illegally take to give them more energy. Their concern was that, although it would help me, they didn't know if it would also assist the cancer. The problem is that they don't know, so I would love to hear if anyone knows more about this.
You may be interested in this for a short term relief. I recently went on an overseas holiday for four weeks. Because my cancer levels were low and the Revlimid cycle finished in the middle of the holidays, my specialist said I could wait till I got home to restart treatment. This gave me an extra two weeks off, so a total of three weeks. Because of similar circumstances, I have had an extra one week (total two weeks) off before, but I found that the total of three weeks made a massive difference. I felt so much better and by the third week I had heaps more energy.
If I had known this, I would have planed a different holiday. I have been back a month but still feel better than I did before I went away.
Hope any of this helps and if you have any questions, please ask
David
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David Sheehy
Re: Ritalin or Adderall for fatigue?
Hey David,
Thanks for the additional insight!
I've received quite a few emails and PM's from folks here and at other fora who have had long term success with treating cancer related fatigue with various prescription stimulants, and without serious side effects or addiction.
You make a good point about how a stimulant might increase one's mental focus but without an increase in energy level.
Best,
Steve
Thanks for the additional insight!
I've received quite a few emails and PM's from folks here and at other fora who have had long term success with treating cancer related fatigue with various prescription stimulants, and without serious side effects or addiction.
You make a good point about how a stimulant might increase one's mental focus but without an increase in energy level.
Best,
Steve
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Ritalin or Adderall for fatigue?
..Between the steroids and the speed, I'd imagine your Adrenal Glands and your testes...are going to start to look like ....tiny raisins, fairly soon.
I sure hope you don't drive down my street in a car.
Please look up an article on reduced oxygen transportation in the low-hemoglob / hemacrit population--and the effect on major Organs. Also look up Hypotensive events and Stroke episodes and their causes.
Yeah, this disease is limiting and frustrating. But please, don't be a zip head, to boot.
That just makes things worse.
Good luck.
I sure hope you don't drive down my street in a car.
Please look up an article on reduced oxygen transportation in the low-hemoglob / hemacrit population--and the effect on major Organs. Also look up Hypotensive events and Stroke episodes and their causes.
Yeah, this disease is limiting and frustrating. But please, don't be a zip head, to boot.
That just makes things worse.
Good luck.
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Rneb
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