Who Is Prescribed Any Parkinson Drugs Here? Doc Won't Prescribe

Discussion in 'Fibromyalgia Main Forum' started by enjoysue, Nov 20, 2006.

  1. enjoysue

    enjoysue New Member

    I just saw my pain doc today and again she wouldn't prescribe Mirapex. I told her that parkinson meds for fibro is all over the net and she tried to tell me that that is patients talking and not drs. amd that some drs are using their patients as guini pigs. *sigh*

    Instead she give me 10mg. of oxycodone 2x/day and flexeril which doesn't even help me one bit. I could take it or leave it.

    I went to a rheumy who told me I should be on amitriptyline but I can't get anyone to even prescribe that. I even have to go to our county mental health clinic to get ambien prescribed because my own doc and pain doc won't prescribe a sleep med. The mental health clinic won't prescribe the amitriptyline because it's being prescribed for pain and neither will my pain doc for some reason. Have you ever heard of anything so crazy??! The rheumy won't prescribe it cuz I'm not really his patient. I was just referred to him because my ANA was positive.

    If anyone is willing to tell me what they are on or even their drs. name I would appreciate it. I'm ready to start over will all my drs. I am so fed up.

    She called a trusted collegue and she will prescribe Limbrel which I can pick up some samples on wednesday but what good is it going to do me because it is brand new and I doubt any of my Medicare Part D plans will pay for it. I could scream!! This is supposed to be something that works in a few days I guess. I have to look it up on the net to see what class of drugs it even is. I'll keep you posted on that. In the meantime thanks anyone who can help me.

  2. Musica

    Musica New Member

    You can't even get a doctor to prescribe amitriptyline? That's getting to be standard to help sleep issues in fibro, even though it doesn't actually help the quality of sleep.

    It probably is hard to get some docs to prescribe Mirapex. You might refer her to Dr. Holman's published studies, and to Dr. Dryland's book The Fibromyalgia Cure, which basically says that after trying the dopamine agonists, he had great success in helping fibro patients feel better. I know Dr. Holman is quite willing to talk to doctors, as well, if they call him.

    Good luck!
  3. enjoysue

    enjoysue New Member

    Fight4acure, I've tried cymbalta with no luck at all. The nurse prescriber at mental health kept trying to push cymbalta on me again instead of the amitriptyline and I said no way. Why take something you know doesn't work and besides, it's expensive and I already have reached my donut hole in Medicare Part D.

    I heard such great things about lyrica too and it didn't do a thing for me. I thinkt he drs. have all given up on me and I have not given up yet, though I am close to stopping all meds and drs.

    I didn't know you are almost ready to be a social worker Fight! Good going and best of luck to you!!

    Musica, I had a feeling you were into music. I love cats too, and my Maggie has dog like qualities also.

    Thank you for the good information Musica. I will see if there are any copies in our library system and look that up on the net. Thanks so much guys. I am at the end of my rope I feel. I suffered to long and to hard and I hate playing musical chairs with the drs.
  4. b~kay~b

    b~kay~b New Member

    hi well i started on sinemet and sinemet cr at first did ok but symptoms got worse and doc put me on mirapex it helps the symptoms dont go away completely but they have calmed down i have tremors in legs, arms and hands, neck and head as well as RLS, the twitches, body jerkks and limbs do it and my jaw and tongue. the doc actually said is it parkinsons i dunno but at least they figured something out if it is pd time will tell because i fit that to a "t" and some symptoms i didnt expect resemble fm but no one has explained to me about how i freeze up and how my left arm doesnt swing when i walk and right arm barely has a swing but that is kinda hiddden now i hold my cane. then again i learn more here than my doc. but i take mirapex 3x day i experiemnted and didnt take it, and the symptoms come on strong so i wont be doing that again at least i know it isnt in my head lol
    [This Message was Edited on 11/21/2006]
  5. elliespad

    elliespad Member

    I don't take Parkinsons Drugs, BUT,,,I DO take something which boost Dopamine, naturally. (Which is what Parkinsons Drugs attempt to do, chemically). It is DL-Phenylalanine. This is a combination of the D - and L - form of the amino acid Phenylalanine. This form of phenylalanine acts as a natural pain reliever. It will help your body make DOPAMINE AND Endorphins. Endorphins are actually far more powerful than the drug known as morphine. For pain control or as an anti-depressant take 1,000-4,000 mgs twice a day on an empty stomach. (I personally take 1000 mg, in the morning, empty stomach and this is my only pain medication.) Take away from other proteins.

    It will also help your body make Tyrosine, which converts to the neurotransmitters norepinephrine, epinephrine, dopamine and tyramine, which will help with fatigue and daytime alertness. Tyrosine and its metabolites have been shown to support emotional well-being, memory and learning.

    This DL-Phenylalanine can be bought at any health foor store for under $10.
    [This Message was Edited on 11/21/2006]
  6. Mikie

    Mikie Moderator

    That sounds promising. Is that what Rich mentioned that helped him? I can't rememver. Sounds like it just provides the raw material for the brain to produce its own dopamine.

    I am wary of drugs which increase dopamine in the brain. They only work for a short time in people with Parkinson's. If they were to stop the production of dopamine in us, we would suffer from a Parkinson's like condition. Dr. Cheney, among other docs, has expressed a concern about long-term use of meds which alter the brain's chemisty.

    This concerns me bacause I take Klonopin to increase GABA in the brain. There have been a lot of people on it for years and years but I don't know what decades of using it might do. Cheney believes it actually protects the brain from premature death of the neurons. I hope he's right. I also hope that eventually, as I make more progress toward healing, that I will be able to wean off of it. I no longer need it during the daytime, just at night to sleep.

    Love, Mikie
  7. elliespad

    elliespad Member

    I should have added, I also take GABA. It is in a formula called Rest & Restore, that I get from FFC. But, I also take plain GABA from Vitamin World if I run out of their product.
  8. Slayadragon

    Slayadragon New Member

    I really like DLPA.

    I don't have pain, but have found it very helpful for the small amount of depression that remains now that my mood (I got bipolar from a head injury and then CFS, within a period of a year) is stabilized with the anti-convulsant Lamictal.

    It definitely has helped, and with no side effects.

    I also like Klonopin and have been on it for about 7 years. I only take it at night to get deeper sleep. I can sleep without it, but my sleep quality is not nearly as good. I have not increased in dosage over the years (I take 2 mg) and find no desire whatsoever for it during the day. It seems clear I'm not addicted, therefore.

    I also use Xanax (which stays in the body for a shorter period of time) if I wake up earlier or want to get a good nap.

    I asked my doctor at my last meeting if he thought it was okay to keep taking the Klonopin and Xanax indefinitely. He said yes, but that hopefully if the anti-viral worked I wouldn't need to. This sounds overly optimistic to me, but it's a nice thought.
  9. IowaMorningGlory

    IowaMorningGlory New Member

    If you actually saw the Rhuemy in his office, then yes you are his patient also. At least that is what Medicare Part D would say because you had to have the drs referral to go see him.

    I would say make an appt to go see him again. Seems to me he might be your best bet for a doctor with any common sense at all about FM. My Rhuemy I says once, same as you a referral, and I called him on the phone to get Mirapex prescribed and he did it. No questions asked. My phycians increased it for me without any questions asked. It is so frustrating to hear stories like this, and I have for years. I am in healthcare and I hate the way our healthcare is run.

    I think I am going to start a campaign to actually get the AMA to actually say their are drugs out there that are for this syndrome add it to the list. And don't even get me started on why we should have to try three drugs to get a drug medicare will cover, or not cover. Depends on there day.

    I am sorry, ranting again. But I do think I am going to start some research on educating physicians and AMA on drug coverage.

    I wish you all the luck and I would gladly give you my physicans names and addresses if the moderators allow. Just let me know.

    Mirapex does help me not enough yet but we are still titering up. Same with Lyrica (all I did was ask for that one too) You shouldn't have to go what you are going through. I know how horrible the jumping is. No matter how tired you are and you want to sleep, you close your eyes, relax....and start jumping. There goes the sleep.

    I do not take anything for depression, I used to but because of my MVP I could not take anything. It always interferred. I don't mind. But Amitryptaline is for depression, pain, migraines...geez you think they could just pick one and give it to you.

    You take care sweetheart and kitten hugs,
    Blessed Be,
    [This Message was Edited on 11/21/2006]
  10. elliespad

    elliespad Member

    I took this cut and paste, that follows, from the website of Ray Sahelian, M.D. The article in the Fibromyalgia section is much more detailed and I recommend you read the entire article, if enhancing Dopamine is something you would like to do. I wrote of my experience using DL-Phenylalanine, above, and plan to use DL-Phenylalanine and Mucuna Pruriens together, and see if there is further benefit. Here is the cut and paste:

    I want to give you and your staff an update on the use of Mucuna Pruriens as a treatment for Fibromyalgia. Mucuna was used in combination with Mirapex daily with remarkable results. Both Mirapex and Mucuna raise dopamine level. The ability to handle stress over time in any situation is the most noticeable change. From January through April while taking Mucuna regularly, there was a definite improvement in sleep, waking up refreshed with improved energy throughout the day. Not as easily overwhelmed; therefore, more activities were accomplished. My chiropractor, who takes careful notes 3xwkly was so impressed with my response to the Mucuna that both he and his wife started using it. With limited funds, I stopped taking Mucuna in April. The emotional stability using the Mirapex alone is still unmistakably the best in my entire life. However, the Mucuna does provide additional benefit that Mirapex does not, ie improved sleep, perky positive energy, more activities accomplished. Whereas the Mirapex leaves me feeling drugged and sleepy but very calm in the face of stress. Fibro pain and pain in general is definitely reduced. I definitely will be using Mucuna pruriens again soon. In the future, I hope that you, Dr. Sahelian, can develop a natural medication to raise dopamine in the treatment of Fibromyalgia. Mirapex is just too harsh, but it's the best that we have right now. I'm just grateful to have Mucuna pruriens. It's certainly an improvement over using Mirapex alone. I am now reducing my dose of Mirapex and relying mostly on Mucuna. By reducing Mirapex I have fewer side effects and the Mucuna seems to be as effective. I am convinced that maintaining a normal level of dopamine is the key in the treatment of fibromyalgia.

    [This Message was Edited on 11/21/2006]
  11. carebelle

    carebelle New Member

    I just went to a Pain Clinic and the Doctor would only give me amitriptyline and a muscle relaxer called skelayin .

    I have taken amitriptyline before for depression and it puts weight on me.

    I am waiting to get to my GP today to talk it over with him. And then my Nuro next week and my head doc also.I am frustrated that I have to go to a group of different doctors and have different appointments with each ,then clear what meds I take threw each of them. None of this is fair . I wish they were all in the same building and talk to each other about my needs.

    This is what causes depression and stress .I don't feel well ,its so hard to go anywhere and trying to go to all these doctors makes me just want to curl up in a corner and never go out again.I am being sent out to all these different Doctors .The Military does not have open appointments for me so they are sending me to Civilian Doctors.How do I keep them all informed and make sure I can take any of the meds with other meds .

    I have mentally been threw a very stressful life with this DD like many of you.It took me several years to get back to a mentally Healthy person .I can not just take meds that they hand out SPECIALLY anti depression meds.I already take something else for my depression I am scaried to double up on them . I need something for PAIN.
    I'm sorry I had to Vent and have just run on.
    I wish you luck in finding a Good Doctor.
  12. shar6710

    shar6710 New Member

    Oops I posted here earlier but went to edit a typo and deleted instead...

    Anyway, if you are having trouble sleeping than you should ask for a referral to a sleep specialist. That is who Rxed Mirapex for me.

    If you've been complaining of not sleeping well then I don't see how your PCP can refuse. If he cannot solve your sleep problems then he has an obligation to send you to someone who can.

    Of course you might not need Mirapex, maybe you have another sleep disorder that needs addressed.

    Another suggestion is not to mention that something is "all over the internet". Most Drs should accept abstracts from respected journals and gov sites especially if you print out the info for them to read.

    Ellie had a good suggestion about DL-Phenylalanine. It is a dopamine precursor while Mirapex is a dopamine agonist either way it sound like they both have the same effect on us.

    Good Luck,

  13. enjoysue

    enjoysue New Member

    Thank you everyone for your knowledge and compassion. I swear the only way we are going to get better is to work together and build a stronger voice out there.

    I am definately going to try the DL-Phenylanine but I have to first try the Limbrel and be my drs. first guini pig on that med. I looked up the drug and I wasn't impressed and would be very surprised if it helped at all. But I will keep an open mind and give it a try.

    Iowamorningglory, you go girl on your campaign!! I have some things I am passionate about and am joining a task force on it and have other nonmedical issues I want to educate certain people about. I'm not so sure I want to see that rheumy again.I didn't particularily like him and I'm pretty easy to please. I did see the pulmonologist today and he says I need to see a specialist in fibro and that he attended a seminar where they discussed the new drugs out there. He went because he also does sleep studies.

    WHY I didn't ask if he thought I should do a sleep study, I don't know. I know sometimes I snore or so I've been told. I just love this doc. He has such empathy and compassion. I see him again in March. If he could be my regular doc I'd be one happy camper :)

    Hayleycole, I think I will just email that article to my pain doc and try to find other articles. I think I saw something on this site by a Dr. with a name that starts with a C I think? (don't you just hate fibrofog!) It was probably some of your postings on here that I read awhile ago. I will have to catch up on that. Thank you.

    Elliespad, thank you for that article too. Shar6710, my pain doc knew I asked for this med almost 3 months ago and she kept telling me she needed to do more research. With that she means her medical journals. I was grasping for straws to try and get her do do SOMETHING!

    I just figure I have nothing to lose. I am one who thinks giving out anti-depressants freely is risky business. Do we really know what the consequences of this will be down the road? Do we ever when we are taking drugs? Each person has to weigh the pros and cons of each therapy. It's my life and under a drs. careful monitoring I am willing to try Mirapex and most any drug. Hey, I can rant with the best of them!!
  14. IowaMorningGlory

    IowaMorningGlory New Member

    Enjoysue you put a smile on my face with the,"you go girl."

    Thank you for the encouragement. I do have to say I am lucky..I have a wonderful general practitioner and Rhuematologist. They see me once a month, I can call and suggest something to try and they call it in. I can do the research and they listen. Wouldn't it be great if all doctors were this open minded and compassionate.
    I feel like I have educated them to a certain extent.

    My Christmas wish would be that everyone with CFS/FM had doctors who knew what FM was and how to treat it, and were compassionate to their patients. I also would wish that the medicines we take that are now prescribed for depression and we need for pain, or ones prescribed for parkinsons we use for RLS/Myoclonic Jerks, etc., or ones prescribed for seizures that we use will actually say, "This medication can be used specifically for Symptoms of CFS/FM."

    Seem I am having a painful day and doing a little venting. Not too much I hope.

    I do passionately hope you can find a doctor, no matter what his specialty that can and will help you and you feel comfortable with.

    I wish you luck and know you will succeed.
    Keep us posted.
    Take care and kitten hugs,
    Blessed Be,
  15. Musica

    Musica New Member

    I don't know how much credence your doctor will give Dr. Holman since he is the one who published the study on Mirapex (in fact, he has the patent on Mirapex and ropinarole for FM), but if anyone can explain what Mirapex (and amitriptyline, for that matter) can do, it would be him. He is at Pacific Rheumatology Associates in Renton, WA. You can find his phone number on the Co-Cure good docs list. I think the fight-or-flight theory that is explained in the video being promoted here "Show Me Where It Hurts" would also be good for your docs to understand how much impact lack of good sleep has on FM - or any health, for that matter. I hope you find someone who can help improve your sleep!

    Music is the way I best express myself. I feel music in my soul! Do you sing, play an instrument, or what? (Sorry, I should probably have looked up your bio first :) )
    [This Message was Edited on 11/21/2006]
  16. matthewson

    matthewson New Member

    Flexeril is related to amitriptyline. It frankly doesn't do anything for me for pain, but I take it before bedtime and it is a good med to put you in stage 4 sleep. So, essentially, your flexeril works like amitryptiline.

    Will your Dr. prescribe neurontin for you? It is generic (gabapentin). It can help with pain.

    Hope you can find something that works and is affordable!

    Take care, Sally
  17. sacdp29

    sacdp29 New Member

    I wanted to let you know that I am on Mirapex for my RLS and it makes a big difference. When I run out (which happens sometimes) before I can get it refilled, I can't sleep. I end up walking the floor. I definitely recommend it. I'm sorry you are having trouble getting it prescribed to you. Another thing I wanted to add, my pain center was able to get me my Mirapex, free, from the manufacturer.
    I get like a 3 month supply. Good luck
  18. Noralyn

    Noralyn New Member

    Since we have members who are taking Mirapex, I am interested in hearing about side affects, if any. I was told that it can make you clumsy, with the possibility of raising the rate of falling down. Any thoughts on this?

  19. Mikie

    Mikie Moderator

    For anyone who is so frustrated at not getting help with treating FMS, I highly recommend you check out Dr. St. Amand's Guaifenesin Protocol. It's a slow, long-term treatment which requires patience and commitment, but it has reversed my FMS symptoms as it has for thousands of others. The Guai is sold here and other places OTC. It isn't expensive and has very few side effects.

    I was bedridden most of the time and on Morphine for my FMS pain. Because the Guai takes time to work, I had to stay on the Morphine for the first year but I used it less and less over that year and eventually, could do without opiods. I seldom need anything now and when I do, it's just an OTC pain med.

    My fatigue is much improved but I also have CFIDS so I'm not well--yet. I'm making progress but the last six months have been challenging because of my failing gallbladder. Now, I have the abcessed tooth. After the root canal, I expect I'll get back to improving. Progress is slow but it is progress.

    Anyone interested in the Guai treatment can go to the FibromyalgiaTreatment website for more info. Dr. St. Amand's book, "What Your Doctor May Not Tell You About Fibromyalgia," is an excellent read about FMS whether one decides to do the treatment or not.

    Good luck.

    Love, Mikie
  20. BooBooKtty

    BooBooKtty New Member

    I am still not sleeping, and at 1.0 mirapex. I did have a sleep study & they found no stage III or IV sleep, which is consisten w/ other FMSers who have taken a sleep study. I would REALLY like to ask Dr. Holman if the mirapex comes to a dosage level that FMSers are getting III & IV sleep. I think that would be super interesting.


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