Discussion in 'Fibromyalgia Main Forum' started by charlie21, Oct 6, 2006.

  1. charlie21

    charlie21 New Member

    For those who may have missed this article. I am about to commence on Mirapex, and I live in the U.K. Chalie


    I get regular information by prohealth, and this is what I received today, just thought you might be interested. Charlie21

    Critical New Piece of Fibromyalgia Puzzle Found?

    Pieces of the Fibromyalgia puzzle are slowly falling into place, and researchers are moving toward a unified theory that explains the etiology and pathogenesis of the disease.

    While the conviction among the majority of Fibromyalgia researchers is that Fibromyalgia represents a significant sensitization of the brain and spinal cord, some leading researchers have recently formed a theory that takes the "Sensitization Theory" a step further, to what can be called the "Hippocampus Hypothesis" or "Dopamine Hypothesis." This fascinating theory states that FM is primarily a brain dysfunction resulting from stress-induced physiological changes to a part of the brain called the hippocampus and to the important neurotransmitter that it regulates - dopamine.

    Specifically, the hippocampus is extremely sensitive to stress, and in fact is the brain organ that enables us to respond to environmental stressors in a way that helps us avoid danger. The best example of the beneficial stress response is when our ancestors crossed paths with a saber tooth tiger - an immediate "fight or flight" response was mandatory to ensure survival. Studies have shown that chronic stress, however, can contribute to a disruption of normal hippocampus function. The hippocampus plays a major role in pain perception and memory formation, and it is involved in controlling the production of that crucial brain neurotransmitter, dopamine. Dopamine abnormalities have been linked to "restless leg syndrome," increased pain, and feelings of self doubt, anxiety, and problems with memory formation.

    If the "Dopamine Hypothesis" is correct, then it is reasonable to assume that drugs that restore normal dopamine levels and activity in the brain should have a therapeutic effect when administered to Fibromyalgia patients.

    And this is where the "Dopamine Hypothesis" picks up steam. Andrew Holman, MD, recently conducted a controlled, double blind study of the drug pramipexole with several Fibromyalgia patients. Pramipexole, sold under the brand name Mirapex™, is approved for treatment for Parkinson's disease - a primary dopamine disorder. Patients experienced significant improvement in their symptoms. Another drug that affects dopamine and has been approved by the FDA as a treatment for restless legs syndrome - ropinirole - also met with remarkable success in another recent Fibromyalgia study conducted by Dr. Holman.

    All told, the Dopamine Hypothesis looks promising for several reasons. It ties in nicely to the pathogenesis of the disease - that the onset of Fibromyalgia frequently occurs during times of prolonged or intense emotional or physical stress, when the hippocampus may become overworked and become dysfunctional as a result. And it ties into the fact that dopamine, which is largely regulated by the hippocampus, may cause many of the symptoms of Fibromyalgia when its levels are unregulated.

    I would like to acknowledge Patrick B. Wood, MD, and Dr. Holman for their brilliant work with brain imaging, neurotransmitter physiology, and creative pharmaceutical approaches to normalizing/regulating dopamine in Fibromyalgia. Their work has proven beneficial to many Fibromyalgia patients and may hold promise for treatment of millions more. I applaud their bold, creative, and compassionate work.

    Dr. Wood explains the Dopamine Hypothesis in easy-to-understand language, using computer generated graphics and patient and doctor interviews in the acclaimed Fibromyalgia DVD "Fibromyalgia: Show Me Where It Hurts" To purchase a copy of this DVD, please visit the ProHealth store.

    Wishing you health and hope,

    Rich Carson
    ProHealth Founder and CFS Patient

  2. dononagin

    dononagin New Member

    Makes sense.. For me I got sick after a year that I lost my grandfather, Mother, Uncle, went through a divorce, had a cancer scare, lost a job, relocated and started a new job.. Hmmm... I think my stress was a bit out of control.
    I do think there is something to this stress theory..

    I hope they are on to something, it would be wonderful to have something we could take that would make a real difference..

    Hugs to all..
  3. charlie21

    charlie21 New Member

    I appreciate your input on this matter. I won't be starting mirapex until monday, because they do not have it in stock, it is not something that is very known in the u.k. as yet. I am starting on 88 microgrammes to begin with, and then I think he plans to increase it every two weeks. I am very sensitive to any drugs I am given, so I think he is playing it safe. How much are you taking please? Is there a minimum and maximum dose. Since I have had this FM, feel my personality has changed, much more anxious from what I am normally am very confident normally, feel I blab my way through life these days, and yes I get the "but you look so well" comments from people. Feeling a bit low just now. Does it lift your spirits as well. Charlie
  4. charlie21

    charlie21 New Member

    Don't you thing 88 microgrammes is a strange figure, at least that was what the pharmacist told me when I asked her what dosage I would be on when I collect them on monday. Said I will need to take them three times a day.
  5. Granniluvsu

    Granniluvsu Well-Known Member

    Charlie and Hayley, (or anyone else who might have some info for me)

    How did the both of you get your doctor to put you on Mirapex? How long has this been out to the public ? I think that I have heard of the drug but that is about all, along with all the other possibilities of drugs. So, I may not have paid that much attention to it.

    Just wondering how one gets to try these different drugs. Did you have to bring it up to your doctor or did she/he bring it up to you? It was all very intersting. I go in another week or so to see my rheumy and was wondering if I should mention it and /or bring this informtion for her to see.

    Thanks alot for any info you cn give me. I was undergoing a variety of stressful situations at the time. I have had this mess for over 20 years, was finally dxed with it almost6 months ago and an currently just taking gen. klonopin and Flexeril to sleep. That is about all. I am afraid to take anything to strong as I asm still up and about, driving, etc. The doc gave me Darvocet I think with some narcotic and haven't taken any yet.

    Blessings to you both and whoever else might read this and have any info for me ,

    Granniluvsu (Marilyn)
  6. charlie21

    charlie21 New Member

    I ran a printout and gave it to my doctor, and asked him what he thought about this new breakthrough. He said he was treating four other patients with FM, and was quite happy to give it a go, being careful to make sure that other medication I am taking does not interact with it. I looked up on the internet mirapex and fibromyalgia, and it seems to come up with articles about the new breakthrough to get mirapex to help us. Mirapex is not a new drug. I live in the U.K., Mirapex isn't really known in a big way in the U.K., which is why I cannot have it until Monday, but we do have a similar drug. Even if I get side effects, I am prepared to give it a go, and continue it for a while. I work for a Consultant Psychiatrist also, and showed him the article I was going to give to my doctor, and he said it was a very interesting article and should show my doctor it. One thing I have learned in my job, is that many people who take any drug, the slightest side effect, and they come off their drugs, and do not always give it a chance to kick in. Unless you are allergic of course or really sick, it is often a good idea to persevere a little while longer if you can. I will be giving updates once I start taking it on monday, and will let you know. Charlie
  7. charlie21

    charlie21 New Member

    Hello Hayley. Well collected my Mirapex today, and have been given one months supply, even though he wants to see me in two weeks time. You are right about the dose, on the box it says 0.88 mg tablets. Charlie
  8. My dr. wanted me to try it, but I am at the point of being tired of being overwhelmed by taking meds. I decided not to fill the script. BUT PLEASE let us know how you all are doing on mirapex. GOOD LUCK!
  9. macetree

    macetree New Member

    My DH suffered for five years before finally being diagnosed with FMS in Nov 05. At his last appointment with his PCM (VA) I mentioned his restless legs. Her eyes widened and she says Of course and prescribed Pramipexole Dihydrochloride once a day at 0.125 MG. That night he had the best nights sleep he had had in years. He doesn't take this everyday though only when he is having trouble sleeping.
  10. NyroFan

    NyroFan New Member


    IMHO but my doc blames my aches and pains on Fibromyalgia.
    He said there is no cure and he prescribes pain meds: heavy and hard.

    I go to him on a regular basis. He draws blood in the office and all comes out OK.

    I have given up on the 'magic bullet'. I believe doc, as nothing i have tried has worked.

    In a way it is a relief.

    I also have a nureo guy who has said the same thing.

    I maintain Ok. i just can not drive myself crazy anymore over alternative methods.

    God love the ones who can. I just happened to find a doctor who relieves my pain and who I can talk to. He will also make med changes based on my readings. Who could ask for more?

    I am resolved. I just can not drive myself to the edge looking for a reversal of symptoms.

    At one time i tried and just got sicker and sicker.

    Just my experience,

  11. charlie21

    charlie21 New Member

    Please try not to give up on medication. I know sometimes it seems it is not working, but a few times I have come off of my drugs because I didn't think they were working, and I was a dam site worse off when I didn't take them. It is my first night on Mirapex, in the u.k. we call it Mirapexin 0.088 mg. I took one at 7.00 p.m. three hours before bedtime as instructed. In bed by 10.00 p.m. First thing I noticed was my lips were tingling, but soon passed off. My feet felt very cold, and had trouble warming them up for a while which isn't normal for me, legs were tingling, and then I got the sensation you feel when your feet have been cold or numb even for so long, you know when the circulation is beginning to come back, and then they were glowing nice and warm. I fell asleep for about an hour and a half, dreaming a lot, nothing awful, and jumping myself awake often. Two hours later, I am up having a cup of tea and writing to you. Now bear in mind this is very early days, and my body has to accept this new drug. I am going to stick with it. Because I work for a consultant psychiatrist, we have found that many of our clients come off their drugs far to soon, in fact some only give it a few days, and they have already made up their minds it isn't working. I am going to persist, and tomorrow when I go to work, I will be having one three times a day. Will keep you posted. Charlie
  12. charlie21

    charlie21 New Member

    Hayley I have started a post called "Blow by blow account of mirapex and my findings". I am going to keep on adding to it each day, to hopefully see the improvements by taking mirapex. I have already started it if you are interested. My legs are already feeling a bit different. Warm and glowing, and restless legs which is really everywhere with me, nowhere near as bad. Just had a problem staying asleep, but early days yet, and this would be my normal pattern to be getting up at all different times anyway. Charlie
  13. charlie21

    charlie21 New Member

    If I am going to dream, it is normally as I am waking up in the morning, not normally when I have only been asleep for hour and a half. My dream was about going through the back door of my house and down to the bottom of the garden in the dark, and there are a lot of trees, and a canal. I walk along the canal, and realise I am not going to be able to identify my house on the way back. Very bizaare dream. Although I have been asleep, doesn't really feel like it. I think I was initially a bit anxious about going on this drug, so I don't think that helps either. Remember this drug is a head stuff, which is a bit different from some of the other medication we may be taking. I am going to hang in there. Charlie
  14. museinhighlands

    museinhighlands New Member

    Charlie 21 -

    I experience this sensitization/overload, it's a worst flare scenario, I was discussing it on earlier post-can't remember thread name (LOL). (oh, it was thread on numbness & stroke undiagnose concerns)

    Rich Carson article is great. Thanks and good luck on Mirapex.

    Granniluvsu -
    My Physciatrist (muscle MD) (not phychiatrist) had told me about the drug, I get that sensitization overload, (I call it a body migraine), myoclonic (body)jerks, etc.

    I chose to stick with Flexeril for now....but keeping in mind. (I also am sensitive to meds).

    good luck all,
    [This Message was Edited on 10/11/2006]
    [This Message was Edited on 10/11/2006]
    [This Message was Edited on 10/11/2006]
  15. charlie21

    charlie21 New Member

  16. homesheba

    homesheba New Member

    i have been on miripex for years now for rls... but lately my pain dr told me about it for fibro and really... i thought it would not be true, so he wants me up to 3 mgs a day, so far in2 weeks i can only manage 1 as it puts me to sleep fast!
    but today i hopeto go higher by splitting more in half thru out the day.
    . i pray this wks as i am sick to death of pain meds... thank you for this info
    .i just thought i was a guinea pig again for him...:)
  17. Mikie

    Mikie Moderator

    And Dr. Cheney has expressed the same concern, is that over time, if the dopamine agonists cause the brain to stop making dopamine, one will get Parkinson's like disease. I do know that in Parkinson's patients, the dopamine which is given to them eventually stops working. If the brain stops producing it and dopamine supplements eventually stop working, there isn't much left.

    I watch the news channels and have seen doctors, like Dr. Sanjay on CNN, espress concern about all drugs which affect brain chemistry with long-term use. This includes drugs like Klonopin, which I take, and the SNRI and SSRI antidepressants.

    Like with everything, I weighed the unknown potential risk of long-term use of Klonopin versus the inability to sleep, racing brain, muscle spasms, tinnitus, anxiety/panic attacks, and sensory overload and decided I had to take the risk. I've been on the Klonopin about five years and it continues to work so that I can live more normally. I think I would have continued to go downhill if I had not found something to give me quality sleep.

    My doc wanted me to try Provigil, which increases dopamine in the brain. It had a paradoxical effect and just made me tired and groggy instead of alert and energetic. I likely would not have continued taking it even if it had worked. I get better results from a cup or two of coffee when I get up.

    I am happy for everyone who gets better with Mirapex, or any drugs I've posted about here. Heaven knows, I would be really sick without my Klonopin. I just hope that there are no side effects waiting down the road for us. There is no way to tell now what will happen then. Most of us have been so sick and so miserable that we are willing to make that trade off for some kind of decent quality of life now. I pray that our meds, which are working well for us, continue to work and that there are no long-term effects.

    Love, Mikie
  18. mindbender

    mindbender New Member

    I guess my suggestion for a new name doesn't look so stupid now.
  19. charlie21

    charlie21 New Member

    Thank your for your comments, and I do agree with you wholehartedly. When the pain and discomfort knaws at you all day, like you said we become desperate. My quality of life was awful before taking Mirapex. I have been on it a week already, and can already feel the pain and muscle spasms come back as I am due for my next dose, so must be doing its job. I too am prepared to take the chance that maybe in the future there could be long term effects not only from Mirapex, but from some other drugs I have been on far longer. I suppose I go with the attitude, there may not be a tomorrow, who knows? Charlie
  20. charlie21

    charlie21 New Member

    Glad you have benefited from Mirapex. It is nice to get first hand experiences of genuinly suffering people, and not have a drugs rep trying to promote their drugs. Apart from the sleepy whoozy feeling I get now and then, it is nothing compared to the pain and muscle spasms I was having. I have not got rid of the muscle spasms and pain completely yet, but I am at least 50% better, as I had the most awful restless legs and arms at times, but I have only been on it seven days, and another week it will be reviewed again. I am on 1.25 mg three times daily at the moment. I feel slightly wobbly on my feet sometimes, and more sleepy as the day wears on, but can function okay. What side effects have you had please. Oh and I sleep through the night now, whereas, I would go to sleep, and wake up a couple of hours later, and was up for the rest of the night, and tired at work. Charlie