I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Psim on May 30, 2008, 08:30:51 AM
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I've been feeling even more tired than usual recently (I know I don't have to explain that to you all!) and my GP suggested dexedrine as an occasional boost. I asked her to check with my neph, and he ok'ed it... I did an IHD search for "dexedrine" and came up with nothing... anyone else ever been prescribed it and did it help?
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Yes, sometimes these are used for this purpose but I have always been leary of these type of medications. If you were my patient, there are several things that I would consider first such as optimizing anemia control, adequacy of dialysis, avoiding stress, correct diet with fruits and vegetables as well as the usual tests done for fatigue such as thyroid test and others that we do in the regular patient population. Hopefully you have had these discussions with your primary care physician. Fatigue can be a sign of other things but it may also in the dialysis population reflect the level of dialysis as well. Most importantly is the level of exercise and proper rest. Further, I had a couple of cups of coffee yesterday which I don't do very often and today I am a little more fatigued than usual. Yes, coffee gives and immediate pick up, but you pay for it later on.
Interestingly, as I am now training in center for self care, I have forgotten on a couple of occassions to properly rinse my lines before starting. I did have a tech for several months that I felt quite tired as well. I put it to the fact that I have now been on dialysis for over a year. Yet when I started rinsing my lines very well, much of that fatigue went away. I found out that she did not rinse her lines in a time saving step. For me, it was a very significant impact that I can definite tell.
My point is that you should discuss with your technician, your nephrologist and your primary care physicians on many issues whether all of these things have been eliminated. In general, fatigue can be from very benign problems such as depression which is quite prevalent in the dialysis population and other issues, but as in all things in medicine, your own physician knows you best. I hope that this gives you some issues to discuss with a whole bunch of people.
May God bless,
Peter
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Looking for factors other than anemia to explain exhaustion in dialysis patients is like trying to blame a leaking garden hose for the high level of water after the Hoover Dam has burst. Sure, the hose might have contributed a bit to the excess water level, but the dam played the only significant role. When you hear hoofbeats, look for horses, not zebras, is the first rule of medicine.
Dextroamphetamine will raise both blood sugar and blood pressure, and anyone prescribing it for a renal patient will have to take account of the delayed clearance of the drug from the body, giving it a longer period of effectiveness than that stated in the pharmacopia. Just make sure that the hemoglobin has been raised to the maximum safe level before resorting to drugging the patient with amphetamines!
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Amphetamines to treat kidney disease related exhaustion!
Sounds nuts to me. Maybe they can get you some cocaine too.
It just sounds like another misguided attempt for your doctor to get you feeling better about living with this awful disease.
But if this is what it takes, I'm all for it. Just make sure you know about long-term effects on your kidneys and general health.
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Before I was diagnosed with kidney failure, I used to take dexedrine just to FUNCTION. It helped, for sure. Though my application was illegal, I can say the effects made me have a little more energy.
I'd just agree with what Stauffenberg has said, and becareful on it - as it raises blood pressure and there is delayed clearance.
I know what it's like to have no energy, though. It sucks.
~Steve
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i wish theyd hook me up with some of that.......be careful with it tho
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Dear Stauffenberg,
It is difficult at times to know how to answer some of your posts in a nonconfrontational manner. I do believe that I already addressed anemia as number one on my list so I am puzzled why you appear to have contradicted my post when in fact that was the first issue that I addressed.
In any case, for an answer to your post, a zebra in medicine is a diagnosis that is rare but can present as more common illnesses do. I must protest that I did not list a single zebra on my post. All of the issues I discussed are some common features that should be considered in general for an evaluation of fatigue. Further, the main point that I was making is that fatigue can be due to many causes. In fact, fatigue is not a diagnosis, it is a symptom which means it is related to an underlying cause. As you and others should know, anemia control in America in most facilities is in the 90% range thus, once it is noted that a Hb level is over 12, that is not likely to be the cause of severe fatigue to the level of needing dexedrene to function. I would find that unusual and as a physician with ~20 years of experience in clinical medicine, I do believe I have outlined a reasonable start for a thorough evaluation.
Further, as a dialysis patient for nearly a year and a half, I have personally found my own fatigue issues to be multifactorial and simply subscribing anemia as the cause of my own fatigue would be in error since my Hb is usually over 13. Some of the issues that affect how I feel deal with how optimal my dialysis is and that is something that should be a part of an evaluation for fatigue in a dialysis patient. I would venture that many on dialysis have not monitored their kidney for blood streaks or tried to optimize their own clearances by various methods. We must understand that Ktv of 1.2 or even 1.4 is a minimum level and not an optimal level and most nephrologist and dialysis techs and nurses will be satisfied by meeting the minimum requirements. I would highly recommend a regular habit of learning the factors that make for better dialysis and discussing them on a regular basis with your techs and your nurses.
Now, back to the issue of dexedrene for fatique, as a board certified internal medicine specialist, I can categorically state that I have never once advised or prescribed dexedrene for fatigue and I do not believe that it is a part of my practice that is needed. Instead, as in my first post, I believe that a caring physician that will take the time to expand their concept of fatigue in a dialysis patient to include the usual causes of fatigue in the general population is simply a prudent approach to practicing medicine. Thus, in any patient with fatigue, in my own personal practice, I always was obligated personally to explore and exclude a minimum of common causes, and yes, that can be done in simply a few minutes by asking the right questions and looking over lab work.
Finally, a very common cause of fatigue in all patients and especially in dialysis patients is lack of exercise. Further, insomnia is a large issue with dialysis patients. So, in relation with dexedrene, after excluding anemia as a cause, it is likely that dexedrene in the long run is not going to address the underlying cause and lead to further disatisfaction of the patient. You are certainly free to disagree with my assessment and my approach, yet, for nearly 20 years, I have adopted a lets look further approach to all of my patients, if only to satisfy in my own mind a minimum of issues that should be addressed.
May God bless,
Peter
Further
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Peter
Thanks for your post and for the suggestion that we learn the factors that make for better dialysis and thus better outcome. Could you point us in the direction of how to go about this so that I'll be able to pose the relevant questions and monitor for myself what's happening.
Thorough rinsing of lines is one factor as you've said, and you've mentioned Ktv (1.2 and even 1.4 being minimum levels) but I'm unclear what Ktv actually is.
Thanks Peter. I'm really glad you joined us on this site and I apologize for picking your brain too much. LOL.
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Hemodoc: No one said that you prescribed dexedrine for anyone! We were discussing someone else's physician who did this!
My point was that since the 'normal' hemoglobin range for dialysis patients, especially after the new FDA warnings about the risks of elevating hemoglobin to normal levels with EPO, is extremely abnormal, and since anemia is a profound cause of exhaustion, it is only sensible to consider first that the patient's exhaustion comes from this source, the 'horse,' rather than the 'zebra' of some cause of fatigue which may be predominant in the non-renal patient population, but which is not the primary factor in the renal population. If I hear hoofbeats in South Africa I look for zebras; in Wyoming I look for horses.
The few times my own hemoglobin was measured prior to renal disease it was always in the 160 range. When nephrologists told me that I should feel all right when they were keeping me 'safe' by holding the hemoglobin in the 110 range, I could tell that they were lying, and I certainly could feel every lost point of difference between 160 and 110. I even developed an empirical formula: for every point I lost below 160, I had to sleep an additional 5 minutes every 24 hours.
I also would not ascribe exhaustion in renal patients to lack of exercise, but to the factors that cause lack of exercise, such as reduced skeletal muscle mass and anemia.
I agree that the kt/v values defined as 'acceptable' are utterly inadequate for health. As Levy, et al, Oxford Handbook of Dialysis, point out, thrice-weekly hemodialysis in the doses regularly administered replaces only 10 to 14% of normal renal function. The initial determination that a kt/v of 1.2 was adequate was not based on any assessment of what was necessary for health, but only on the epidemiological determination that a dialysis dose of 1.2 represented the critical point at which the economic cost of increased dialysis dose first exceeded the economic cost of treating co-morbidities among dialysis patients.
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Dear Stauffenberg,
Thank you for your response. Yes, all that you have stated about anemia is correct. Yet for the majority of well monitored dialysis patients, anemia correction to a hemoglobin level of over 12 is usually achievable with today's medications. I would simply state that in my experience, most patient's with fatigue did not have a single identifying cause. Most are multifactorial and that thus demands a multifactorial approach to improving the symptom of fatigue. Without going into details on several fronts, that is all the point that I was trying to make and it was helpful to many of my patients.
However, it is interesting the effect of exercise on not only symptoms but actual mortality with a 10-15% improvement almost immediately with 3-5 times a week aerobic exercise. Further, even biochemical profiles have been improved with a standardized exercise program. There is much that could be stated from several interesting articles on this subject but for now let it suffice that exercise is an underutilized adjunct to optimal dialysis just as is dietary factors as well.
Now as far as adequacy of dialysis, in simple terms kt/v is a mathematical formula showing how well dialysis has cleared urea in a given dialysis session. We now know that it does not represent the clearance of what is called the middle molecules which are responsible for much of the adverse effects of CKD-5 damage in patient's undergoing hemodialysis. Much debate is spent on how best to report adequacy of dialysis, but most agree that measuring urea clearance is not the place to end, but it is what is most often reported. This naturally leads to the issues of daily/nocturnal dialysis to reach not adequate dialysis but instead optimal dialysis which has already been shown to save lives dramatically. Ultimately, this is the most reflective measure, over all mortality.
In any case, fatigue is a treatable condition in most patients if only to the point of improving functionality if not able to eliminate the symptom all together. I would contend that there are many people on dialysis who lead extraordinary lives of great vigor. I can think of no better example than Bill Peckham who has already been on dialysis 18 years. Diet and exercise play a great part in his ability to pilot a boat for two weeks in rough waters and then perform dialysis on board ship. Yes, we do know that there are many factors in medicine and especially the dialysis population that are modifiable. Unfortunately, many dialysis patients do not benefit from exercise, dietary compliance and other issues in part because they are not aware of how beneficial these simple modalities can help them. I would suggest Home Dialysis Central and the Kidney School of MEI as an excellent starting point on these issues.
I further believe that all dialysis patients should learn the basics of dialysis well enough to converse with their providers, nurses and techs about specific topics that may be optimized. I have at times discussed certain factors only to hear, oh, you are over 1.4 on your clearance so that is good enough. Well good enough here in America has resulted in the worst performance of any westernized nation. I would hope that we can approach a climate of optimization instead of just adequate dialysis by a poor marker of clearance called the kt/v. I firmly note that a multifactorial approach helps me personally, and I believe that it will help many others as well. The literature likewise supports this approach at least in the individual topics such as exercise and anemia control.
Thus, improving several factors by many increments may in some patients have dramatic results in the larger picture.
I hope that this is helpful.
May God bless,
Peter
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Thanks everyone for all the info. I truly appreciate it. You've given me a lot to think about -- and to ask my doc about. Also a little kick in the pants to stay on top of the things I do have control of -- diet and exercise. I'd fallen down on taking my vitamins and making sure I eat lots of (low potassium) fruits and veg. And as I get more tired it gets easy to let the exercise go. Even though those things don't immediately change how I feel, they no doubt have a cumulative effect in the long run. And yeah, all the usual suspects: anemia, thyroid, depression etc. have been ruled out. I'm pre-dialysis. I think I'll try the dexedrine, but not take it more than once a week for a little holiday from exhaustion. If it works and doesn't just make me tired and jittery... Again, thanks everyone. What would I do without your guidance in these strange days?
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Often in epidemiological studies of the purported benefits of exericse, researchers wind up mistaking cause for effect. That is, the patients who are healthier are the only ones who either can or want to exercise, so the better results they show are due to their better overall health, not to the exercise itself, which is only a symptom, not a cause of the underlying factors manifesting in their decreased morbidity and mortality. If you review the many comments of patients on this message board about their energy level, you will note that most can hardly drag themselves around the house, stay awake, or function at all, so they are not even in a position to adopt an exercise program.
Since in Canada it is expected that a dialysis patient should have a kt/v value of between 1.8 and 2.0, I am always surprised to hear American patients talking about kt/v values in the 1.2 range being acceptable. No wonder the statistics show that mortality among American dialysis patients is much higher than that among patients in other developed countries. In Japan it is 9%, in Canada 13%, but in the U.S. 20%+.
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Even if exercise only helps the "patients who are healthier," why not promote it so those healthy patients don't become sicker patients.
And many on this message board who commented about their low energy levels and could hardly drag themselves around the house did see an improvement after beginning an exercise program.
More people on dialysis need to be encouraged to begin an exercise program. Even those who abhor the idea of exercising.
8)
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I find it interesting when people (doctors included) suggest an exercise regimen is what I need to resolve my exhaustion issues.
Looking at me, you would think I am the picture of health: 5'6", 118 pounds,with that nice kidney disease tan. Yet I can
barely keep the house clean, do the grocery shopping, cook the dinners, and deal with the emotional upheaval of having teen-aged
kids. Then I am told," Exercise, that should help your energy level." Well, when I go for 1 hour walks, which is about all I can manage,
that means I have to take away other things I needed to get done that day. Very impractical and unrealistic. So I can
see why someone might look to Dexedrine for an energy boost. For me, more exercise does not give more energy.
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I'm sorry Sunny, I didn't mean to offend you.
I, too, felt lousy when I was pre-dialysis. In fact I stopped going to the gym because I developed severe neuropathy in my legs and had difficulty just walking.
With all you do in a day, no wonder you're exhausted.
--Zach
8)
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Zach,
I appreciate all you have to say, so I don't take offense.
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I'm very committed to exercise and still belong to a gym but have not been able to exercise really at all for the past few months and pre-dialysis I wasn't doing ANY housework or cooking etc. None, nada, zip.
I've just started dialysis but still can't really exercise. Two days ago I walked for twenty minutes but was whacked for the rest of the day. I used to do 45 minutes of cardio, 45 minutes of weights and 30 minutes of abs and stretching. I'm still going to try though to build up slowly, even if it's ten minutes to start with. I also like the social aspect of the gym where I have many friends and I end up feeling psychologically better if nothing else.
Sunny what you describe that you do in a day IS exercise and I hope that when you eventually have to start dialysis you'll feel better.
We are all so different that every suggestion cannot possibly apply to each and every one of us.
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Even if exercise only helps the "patients who are healthier," why not promote it so those healthy patients don't become sicker patients.
And many on this message board who commented about their low energy levels and could hardly drag themselves around the house did see an improvement after beginning an exercise program.
More people on dialysis need to be encouraged to begin an exercise program. Even those who abhor the idea of exercising.
8)
I for one can vouch for just how much better I have felt after starting a more vigorous exercise regimen. About a month ago I decided that exhausted or not, I needed to exercise. Until then I wasn't sedentary, but I certainly wasn't active either. I walked the dog, walked to errands, etc. Now I do all that PLUS try to walk 3-3.5 miles 5-6 times per week. I cannot tell you how much of a difference it makes. YES, it was HARD to start. I will fully admit that. However, I feel the benefits far outweigh the pain as my overall energy level seems to have improved and if I can keep it up, hopefully I can keep my heart healthy as well.
Obviously everyone is different and I am not saying "this is what you have to do," but I just wanted to share *my* experience with exercise. It sure is helping me and hopefully it will help others too.
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I agree with Sunny 100%. When I was on dialysis, I was constantly profoundly exhausted, to the point where any exercise I did would have to come out of the limited store of energy I had remaining to do the things I had to do, just to keep functioning even at a minimal level.
Since protein metabolism and muscle repair are both completely abnormal in dialysis patients, you may well find that exercise is only breaking down muscle tissue without that being met by any corresponding ability of your body to build up muscle tissue to replace it. Add to that the fact that the muscle exertion in exercise increases creatinine level and you see that exercise for a renal patient does not entail all the positive features it does for the person in normal health.
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Since protein metabolism and muscle repair are both completely abnormal in dialysis patients, you may well find that exercise is only breaking down muscle tissue without that being met by any corresponding ability of your body to build up muscle tissue to replace it.
Studies have shown that exercise can build muscle in people on hemodialysis, as well as strengthening bones and bringing down high blood pressure. Consuming the proper amount of protein and calories is also important, along with a good dialysis dose.
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That is my understanding also Zach and it's why I keep trying to keep moving and to build up my stamina. Which isn't to say that there aren't periods of ESRD when we are simply too exhausted to do much of anything in the way of exercise. I rode 5 kilometers a day on a stationary bike the first time around when I was on dialysis and my doctors felt that being fit was a important factor in undergoing surgery.
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I have just read over some of the posts and noted some of the disagreements on the effects of exercise and renal disease. I would simply propose a review of this subject from a physiologic standpoint and the article listed below is one of the best on the subject. I have noted some discrepancies in comments on the effects of exercise and the true underlying pathophysiology of CKD 5 on skeletal muscle that really should be explained in more detail so that people reading this thread would not abandon exercise without due consideration of the actual benefit especially in a dialysis population.
I hope and pray that this will be of use and perhaps answer some of the confusion on this issue. May God bless,
Peter
Skeletal muscle dysfunction in chronic renal failure: effects of exercise
Gregory R. Adams1 and Nosratola D. Vaziri1,2
1Department of Physiology and Biophysics and 2Division of Nephrology and Hypertension, Department of Medicine, University of California, Irvine, California
http://ajprenal.physiology.org/cgi/content/full/290/4/F753
PS I would also simply point out that we have drifted away from the basic question on Dexedrine and fatigue in a renal disease population. As I noted in my first post, fatigue has many causes and a multifactorial approach is the one with the best chance of success. Further, fatigue is a symptom, not a diagnosis. Example, patient presents with a cough, what is the diagnosis? Well, if the patient has a cough with high and abrupt onset of fever with shaking chills and brown purulent sputum we would already be considering pneumococcal pneumonia on history alone. If we further add the physical exam findings of gram positive diplococci on microscopic exam as well as opacification of the right middle lobe on chest xray, I now have an established diagnosis of pneumococcal pneumonia of high certainty. Yet stopping at the point of "cough" without further history or physical findings, leaves me only with an unexplained symptom and no diagnosis.
Likewise, with the subjective complaint of fatigue, we must understand that is a symptom and it is due to an underlying cause. In a dialysis patient population, there are many underlying causes specifically related to CKD 5 and there are also many underlying causes found in the general population. I would suggest that an attentive ear to the facts of the case are the best tools in leading to a resolution of the symptoms. In my own practice, I freely admit a bias against the use of medications such as Dexedrine for fatigue and I have instead for many years approached the issue of fatigue with an in depth history and physical with selective testing based on the findings of the history and physical exam. It is interesting that I was able to uncover a modifiable cause in a number of cases but some obviously did not have a readily identifiable cause. Yet even in this latter group, a comprehensive program of sleep hygiene, exercise, modification of poorly controlled chronic diseases and adjustment of medications to reduce side effects was effective in many of these patients as well.
I readily understand that many of my colleagues do prescribe these sort of medications, yet in my own practice, I found the other approach more effective in the long run and in such, I never prescribed Dexedrine or other similar medications even once in the many years of my practice, yet I did have a measure of success with my patients that presented with the symptom of fatigue.
Just my opinion based on my own personal battle with CKD 5 fatigue and with my own patients. I hope that this will be helpful.
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Thanks for the reference Peter. Interesting and helpful.
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Amen.
8)
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Wow. Amazing article. Thanks so much, hemodoc. I'll definitely be getting my exercise togs on. I also appreciate your concern about the dexedrine... I feel a bit like I need to defend my doctor (I know I don't really need to -- you were raising concerns, not criticizing her). She's been trying to figure out my tiredness for a year now, and I've had all sorts of tests, none of which show anything. She's nw reordering test I had before just to see if anything has changed. My neph says that there are many toxins that are inadequately filtered in ESDR that can't be measured but affect every individual differently. I accept that the tiredness is just how it is for me now. Some days I can't even have a coherent conversation, my brain is so foggy. But lots of people here go through a whole lot worse, so I'm definitely counting my blessings. But if I could have one day a week when my mind is sharp again, it would be an incredible gift. I'll let you know how it goes.
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I know what you mean about increasing fogginess of the intellect over time during dialysis. I was writing a book during dialysis and I found my output in terms of pages per day constantly going down with each day the dialysis continued, until eventually, for the last three months prior to my transplant, I simply could not organize my thoughts well enough to compose any publishable academic text. All that happened with a kt/v of 1.7 to 1.8, which testifies to the inability of even 'good' dialysis to clear the full range of toxins.
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I know what you mean about increasing fogginess of the intellect over time during dialysis. I was writing a book during dialysis and I found my output in terms of pages per day constantly going down with each day the dialysis continued, until eventually, for the last three months prior to my transplant, I simply could not organize my thoughts well enough to compose any publishable academic text. All that happened with a kt/v of 1.7 to 1.8, which testifies to the inability of even 'good' dialysis to clear the full range of toxins.
Anyone on the verge of switching to higher doses of hemodialysis could preform the simple experiment that I did accidentally on switching over in 2001. Back then I had a serious dependency on Freecell - the solitary card game that comes with the Windows operating system. If you've never tried Freecell it would be best to not start - the point is that each game presents one with a solvable puzzle - the game has tens of thousands starting points and according to Freecell websites all but one game is solvable.
While dialyzing three days a week I could solve typically between three and five games before failing. This is over a period of years - 1997 to 2001. Upon starting daily short duration home hemodialysis on the B Braun I saw my abilities suddenly and unambiguously improve, so that I could regularly do 10 or more games before loosing. In fact my new abilities finally made Freecell boring enough that I lost interest in the game and moved on to other addictive computer challenges.
I put no stock in Kt/V as a marker for optimal dialysis - it is like trying to determine the temperature in a room by measuring the humidity: you can say what the temperature isn't but you can't really say what the temperature is. My belief is that the only way to determine the temperature is to ask a person in the room, just as it is my belief that the only way to decide if the dose of dialysis is enough is to ask the person being dialyzed.
Now obviously, if any one of us entered a room and then were asked what we thought the temperature was we'd all have a different answer but over time we could learn to distinguish the temperature more and more finely if we were allowed to experience a range of rooms with different temperatures. So it is with dialysis. After the frigid experience of predialysis any room will feel warmer but if we are allowed to feel what a properly heated room is like we'll quickly realize how cold it was in the three day a week room.
On exercise I can relate my experience in 1995 when I joined the carpenter's union after 3 dialysis years unemployed. I worked setting up trade shows and as low man on the totem pole I was given many of the unpleasant, physically demanding jobs. No one goes to the gym for eight hour workouts but that is what a shift was like in 1995 to 1998 when I moved into making graphics most of the time. The more I worked, the better my appetite was, the better I would eat, the better I would sleep which then meant the more I could work. I turned the downward spiral I was experiencing in 1994 into an upward spiral. Vigorous exercise made a huge difference in my life and how I perceived dialysis.
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Dear Psim,
Once again, I'm not trying to pick on anyone, it appears that you have a dedicated doc and you should hold onto her. I did find an awful lot of obstructive sleep apnea as the cause of many of my patients with fatigue which is treatable with a CPAP machine that keeps the airways open as well as weight loss. That was perhaps the number one cause of fatigue that I encountered in my own practice. CKD 5 patients are also more prone to this as well.
Psim, are you on dialysis or are you pre-ESRD? I must confess that the last few months before I started dialysis were not fun at all. As far as the mental sharpness, that continues to be part of the problem even on dialysis, yet there are days that are better than others. I am looking forward to starting daily dialysis which in the literature is shown to greatly reduce most of the untoward symptoms. Obviously, those that do well with a transplant overcome this as well in an even better fashion.
Once again, since I don't have the benefit of all the details of your case, I was only trying to offer an insight into some of the general things that we consider in an evaluation for fatigue. I just had my first dialysis yesterday on a FMC K machine at a unit here where our daughter lives and I felt better than even my best days on the FMC H machine. I still believe that for dialysis patients, there are a whole lot of little things that add up to feeling better with each little step making a big step. Perhaps the mountain water here is more therapeutic than my usual California waters. Just speculation, but it was a better experience than my usual bad Mondays. Wed and Friday especially are usually much better.
Peter