Med side effects on FM, why does this occur so often?

Discussion in 'Fibromyalgia Main Forum' started by Chelz, Feb 15, 2009.

  1. Chelz

    Chelz New Member

    This has been a question that NO doctor as ever been able to answer for me. Why do so many of us suffer from medication sensitivity? Since my FM diagnosis, I have been on only 10 different meds, ALL of these meds had to be removed because of awful side effects that my body just could not tolerate and I am currently not on any meds except for occasional Aleve or Advil.

    I would think that doctors would be puzzled by this. On the other hand, I have been to FM support groups a few times and some of the people there who have FM are on many medications, so I was confused about this.

    When I was at a few of these support groups, some of the ladies admitted to a lot of side effects from there medications, but they continued to take them because they just didn't know what else to do. I found this to be disturbing only because I know when I had taken Zoloft, I almost went to the hospital because of reactions, also other drugs I was on caused weight gain severely, muscle relaxers for me caused nightmares and distrubed thinking and sleep, Vioxx was another one I had taken and I felt like I was going to have a heart attack. I can go on and on with these drugs and the problems they have given me. I took only half the dose of Vioxx and it had to be discontinued for me.

    I would gladly take a med for my FM, but past experience has me so anxious that I don't even pay attention to any new med that comes out, especially the ones targeted for FM, the reason being is that once people go on them, the side effect stories about these drugs just keep pouring in. Or, maybe the drug works for a while, but then people start noticing side effects that are just not acceptable.

    Anyway, has anyone's doctor ever given you a theory as to why this happens to some of us who try to take meds? There must be something about our body chemistry, or maybe it's something else. By the way, in the past some natural remedies have helped me like magnesium malate, although it doesn't work as well as it used to, this is puzzling to me as well. Any thought? Hugs Chelz.
  2. Chelz

    Chelz New Member

    What you had said about being a slow detoxifier makes sense. As far as starting off meds with a low does, that is exactly what I did, exccept for the Zoloft which was started at 50 milligrams. Because of the horrible reaction from the Zoloft, every other med was taken at extremely low doses. For examply, when I was given Elavil, I was told that side effects occured more frequently at high doses, not for me, I only took 10 milligrams and the side effects were horrendous.

    Zanaflex, a muscle relaxer was given to me by my doctor years back, he gave me samples which were a 4 milligram tablet. I was able to cut this tablet into 4 pieces, making it only 1 milligram that I took, that also had to be discontinued. I couldn't tolerate only 1 milligram.

    Vioxx was also given to me at 25 milligrams, once again, I cut the tablet in half making it only 12.5 milligrams, still a lot of reactions.

    Interestingly, years back when I had an acne problem and doctors would routinely give out antibiotics for them, I told my doctor that I was too sensitive for anitibiotics, she looked at me like I was strange, (what else, LOL). So, she decided to give me a topical form of Clindamyacin telling me that it would not give me any side effects, wrong, I started to develop diarrhea soon after smothing that stuff on my skin, then I started to get a yeast infection and that was a topical antibiotic. I called my doctor, and she said stop the med, which I did of course.

    Just seems my system is so strange and it leaves me with very little options since I am just too afraid of the reactions. Thanks everyone for writing. Hugs, Chelz.
  3. richvank

    richvank New Member

    Hi, Chelz.

    The body has a system called the detoxication system, which is located primarily in the liver, kidneys, intestines and lungs. Its job is to convert toxic substances that come into the body from the outside, or that are generated as part of the body's normal metabolism, into forms that are less toxic and are more water-soluble, so that they can be removed from the body and excreted, mostly in the stools, the urine and the sweat.

    The detoxication system views drugs as toxins (which they are, at high enough concentrations) and works to eliminate them from the body. Different people are born with different genetic variations in the enzymes of their detox systems, so that they don't all detox the various drugs at the same rates.

    However, the pharmaceutical companies determine dosages and dosing schedules for a drug that will capture the largest market without causing adverse effects in too many people. In setting these values, they are working against the detox system, which is striving to get rid of the drug. They choose a dosage and dosing schedule that will keep the concentration of the drug high enough to allow it to have the effect they want, without being so high that it is too toxic for most people.

    Because the testing required for FDA approval is so expensive, they just choose one dosage and dosing schedule based on preliminary testing, and that's the one they test for final approval. So that's the one the doctors use for all the patients.

    However, it isn't optimum for many people, because of their particular inherited genetic variations in the detox enzymes. In recent years the FDA has recognized this, and is now requiring the pharmaceutical companies to specify which detox enzymes are used for new drugs they produce.

    Then, in theory at least, an individual could decide whether they will have a problem in detoxing that particular drug, if they know their genetic polymorphisms. Of course, insurance companies don't want to pay to characterize them, so most people are unable to use this information, but most don't understand what it means, anyway. But it got the monkey off the backs of the FDA and the pharmaceutical companies, and put it on the backs of the doctors and the patients.

    So that's one possible cause of high drug sensitivity. You may have certain genetic polymorphisms in one or more of these enzymes. Some of the most important ones are the cytochrome P450 enzymes, which perform Phase I detox. For example, one is called CYP3A4. This one detoxes over half of all the drugs that are prescribed by doctors. If you have inherited a polymorphism in this one, you will have problems with lots of drugs, and you would have had these problems all your life, even before you developed CFS.

    If you didn't have high drug sensitivities until you developed CFS, then your problem stems from a different cause. In most of the people with CFS who have been tested so far, a combination of glutathione depletion and a partial methylation cycle block has been found. This appears to be the core issue in the abnormal biochemistry of CFS, and it has a major effect on the entire sulfur metabolism of the body.

    When it comes to detox, this is very important, because the detox system in the body depends very strongly on substances that contain sulfur. Glutathione, which contains sulfur, is particularly important. Not only does it perform the Phase II detox of several categories of toxins, including the heavy metals, pesticides, and certain organic solvents, but it also helps to eliminate oxidizing free radicals that are generated by the Phase I CYP enzymes as they perform the first step of detox on a much wider range of toxins.

    So when glutathione goes down, there are major dysfunctions in the detox system. This can cause a person with CFS to be sensitive to a wide variety of drugs as well as other substances. If a person has had CFS for many years, we can expect that they have built up large inventories of various toxins, including drugs, if they have taken them during this time. The body stores these toxins in fat.

    For the first type of problem, there are foods and supplements that can be taken to help the detox system to compensate for its genetic variations to some degree, and also if one knows which polymorphisms one has (such as by running the Genovations Detoxigenomic Profile), then one can use the Flockhart table to see which drugs must be avoided or taken in much smaller dosages.

    For the second type of problem, which affects most people with CFS, as Caledonia mentioned, there is now a treatment for glutathione depletion and the partial methylation cycle block that is working in most people who try it. This treatment, among other effects, gets the detox system working better, and it then starts taking out the stored toxins. Unfortunately, this is a slow process and is not a lot of fun to go through, but there appears to be no good way around it.

    We plan to report on a 6-month clinical study of this treatment at the IACFS/ME conference in Reno next month. The results are quite promising, though it looks as though it will take more than 6 months for most people who have had CFS for several years to detox all the excess toxins that have been stored in their bodies. I think that's because the detox system is a housekeeping system that has the capacity to keep up with the toxins coming in if it is operating every day, but when it has to work off a backlog that has built up over a long time, it can't speed up very much, so it takes a long time to work it off.

    There haven't been enough people on this treatment long enough yet to get good estimates of how long it will take for total recovery for people who have been ill for various lengths of time, or indeed, whether total recovery will be achieved. A small number of people have been able to go back to work after being on this treatment for over a year.

    I hope this is helpful.


    [This Message was Edited on 02/16/2009]