Mirapex USA Mirepexin UK day 7 astonishing stuff long reading

Discussion in 'Fibromyalgia Main Forum' started by charlie21, Oct 13, 2006.

  1. charlie21

    charlie21 New Member

    Well everyone, who has been interested in my findings on Mirapex (Pramipexole). It has been a week now, and I am on 0.125 mg three times a day. I suffer from FM, and this truly is my own findings, and not some drug rep trying to promote his stuff. With the support of two psychiatrists that I work for, one being a consultant, I saw the latest findings breakthrough with this drug to help FM. I showed it to the consultant, and he said it was a very interesting article, and that I should discuss it with my own doctor, this I did. My doctor has four other patients with FM, and has always been extremely supportive, and uses all of the latest technology, likes to try new drugs, and on the whole is pretty much automated, even a big flat screen is on the wall that you can book yourself in instead of waiting. Everything is also paperless, very impressive I think. Anyway back to business. I have been on mirapex just over a week now, and you may have been looking at my blow by blow accounts of how some of my days went. After an inital dose one evening didn't like the feelings of the drug, but by day three, it has almost been perfected, and I am feeling much much better than I have for a while. I feel better in mood, wake up refreshed, have no more restless legs when I get into bed, and I am not staying awake alnight like I was before. I have become more productive at work, and feeling much more alert. I still have a small amount of pain and muscle spasms during the day, but will be having my medication increased slightly in two weeks time, and it only seems to happen when I am nearing about an hour and a half before my next dose of Mirapexin (U.K) Mirapex (U.S.A). This drug has enabled me to reduce my Tramacet by three tablets a day, and I am no longer taking diazepam (valium) to help me sleep, which as you know can make you feel hung over in the mornings.

    From the responses I have read, some people are only on one dose per day and that is at bedtime, which doesn't help during the day does it. Some are on twice a day. I have found very few are on the intial recommended dose of three times a day and at the lowest dose which I believe is the 0.125 mg. What I think is happening, it does seem to be a powerful drug, and needs I think to be started off really slowly, afterall, we are all different, and may be taking more than we actually need. I am pleased that I have been started off on the smallest dose, because now when I go back to my doctor in a weeks time, and can tell him that an hour and a half before my next dose, I feel I need an increase to make it last upto when my next dose is due.

    Before you take fright when you first take it, this is what happened to me.

    I had prickling sensations in my upper lip and finger tips, which lasted about 15 minutes. My feet became very cold like ice in fact, but when I felt my feet, they were just cool. Took a couple of hours to warm up, but then had a lovely glow. In fact they have a lovely glow everytime I go to bed now, which somehow encourages sleep because it feels so nice. That was my very first tablet.

    The only symptom that I think is here to stay while I am on it is a slightly woozy feeling you get now and then, but I can function well at work. And like I said just needs to be increased I think slightly so I can cover the hour and a half sometimes when I feel I am due for another one. Well I am the first guinea pig for my doctor on this drug, and cannot wait to tell him how I feel. Please note, I am not in anyway trying to promote this drug, only a lot of people have been thinking about it, and some have already tried it, just want to let you know how I have benefitted from it, and for those who tried it, and who gave it up so quickly, it may have been worth persevering a little longer like I did. Fibrohugs to you all Charlie
  2. Mikie

    Mikie Moderator

    Your account has been most detailed and informative for anyone considering this med. Please continue to keep us updated and I wish you continued success.

    Love, Mikie
  3. 1sweetie

    1sweetie New Member

    Thank you for taking your time to keep us so informed of Mirapex on you.

    I have been taking it for over a year to help with RLS. My doctor gave me .5 mg pills and wanted me to dose up gradually to 2 .5 mg at night. I could not do it. I began having severe jerking of my body limbs and depression.

    My CFS doctor lowered it to a .125 pill at night and added Klonopin and other meds to help me sleep.

    Recently I have added 2 mg. of Abilify which I believe also affects the dopamine and I have had the same type of improvement that you are speaking of with the Mirapex.

    Do you know if they work in a similar fashion? Due to the warning on the Abilify, I would prefer to take the Mirapex 3 times daily and stay on the .125 mg pill.

    I know they both work on the executive dysfunction and just wanted to know if you knew how similar theses medications are to each other.
  4. charlie21

    charlie21 New Member

    Hello there, I have managed to get some information on the drug that your doctor as prescribed you (Abilify). Are you aware of what it treats. It does appear to effect dopamine, just not sure why you are taking two together, sounds like pretty heavy stuff to me, but then I am not a doctor, so he may well have his reasons prescribing it for you. I think you need to read this article first, and any questions you may have perhaps you should speak with your doctor. Charlie

    Pronounced: a-BILL-i-fie
    Generic name: Aripiprazole

    Why is this drug prescribed?
    Return to top

    Abilify is used in the treatment of schizophrenia, the crippling psychological disorder that causes its victims to lose touch with reality, often triggering hallucinations, delusions, and disorganized thought. The drug is thought to work by modifying sensitivity to two of the brain's chief chemical messengers, serotonin and dopamine.


    Most important fact about this drug
    Return to top

    Abilify can cause tardive dyskinesia, a condition marked by involuntary movements in the face and body, including chewing movements, puckering, puffing the cheeks, and sticking out the tongue. This condition may be permanent and appears to be most common among older adults, especially women. Ask your doctor for more information about this possible risk.


    How should you take this medication?
    Return to top

    Abilify should be taken once a day. It may be taken with or without food.

    --If you miss a dose...

    Take the forgotten dose as soon as you remember. However, if it is almost time for your next dose, skip the one you missed and return to your regular schedule. Do not take two doses at once.

    --Storage information...

    Store at room temperature.


    What side effects may occur?
    Return to top

    Side effects cannot be anticipated. If any develop or change in intensity, tell your doctor as soon as possible. Only your doctor can determine if it is safe to continue using Abilify.

    More common side effects may include:
    Anxiety, blurred vision, constipation, cough, headache, insomnia, light-headedness, nausea, rash, restlessness, runny nose, sleepiness, tremors, vomiting, weakness, weight gain

    Less common side effects may include:
    Abnormal gait, anemia, appetite loss, blood pressure changes, bruising, chest pain, confusion, depression, dry skin, ear pain, eye inflammation, fever, flu symptoms, heart rate changes, hostility, increased salivation, itching, jerkiness and rigidity, mania, muscle cramps, neck pain or stiffness, nervousness, pneumonia, shortness of breath, skin sores, suicidal thoughts, sweating, swelling, urinary incontinence, weight loss
    A variety of other reactions have been reported on extremely rare occasions. If you develop any new or unusual symptoms, be sure to check with your doctor.


    Why should this drug not be prescribed?
    Return to top

    If Abilify causes an allergic reaction, you'll be unable to use it.


    Special warnings about this medication
    Return to top

    The risk of tardive dyskinesia (see "Most important fact about this drug") increases with the total amount of Abilify that you've taken. To reduce the risk, the doctor will prescribe the lowest effective dose and resort to long-term therapy only if necessary. If you develop symptoms of tardive dyskinesia, see your doctor immediately. Therapy with Abilify may have to be discontinued.

    In rare cases, Abilify has been known to cause a potentially fatal condition called Neuroleptic Malignant Syndrome (NMS). Symptoms include high fever, rigid muscles, irregular pulse or blood pressure, rapid heartbeat, excessive perspiration, altered mental status, and changes in heart rhythm. If you develop these symptoms, contact your doctor immediately. Abilify should be discontinued.

    Because Abilify tends to make some people sleepy, you should be cautious about operating hazardous machinery such as cars until you are certain the drug will not impair your ability.

    In a few people, Abilify can cause an abrupt drop in blood pressure when they stand up, leading to light-headedness or even fainting. Use Abilify with caution if you have any kind of heart or circulatory problem, take blood pressure medication, or tend to become dehydrated.

    Abilify has triggered seizures in a very small number of patients, and can also interfere with the swallowing mechanism. The risk of either problem is greater among older adults. If you've ever had a seizure, be sure to tell the doctor. Abilify should be used with caution.

    Drugs such as Abilify can cause the body to overheat. Be cautious in hot weather and when exercising strenuously, and be sure to get plenty of liquids.

    Abilify has not been tested in children or teenagers. Older adults should use the drug with caution.


    Possible food and drug interactions
    when taking this medication
    The doctor will need to reduce the dosage of Abilify when you take the following additional drugs:

    Fluoxetine (Prozac)
    Ketoconazole (Nizoral)
    Paroxetine (Paxil)
    Quinidine (Quinidex)

    On the other hand, the dosage of Abilify should be increased when you take carbamazepine (Tegretol).

    Be cautious when taking Abilify with blood pressure medications classified as alpha-adrenergic blockers, including Hytrin and Cardura. Caution is also advised when combining Abilify with drugs that act on the brain, including tranquilizers, antidepressants, sleeping pills, narcotic painkillers, and other schizophrenia medications.

    Although Abilify does not interact with alcohol, the manufacturer recommends avoiding the combination.


    Special information
    if you are pregnant or breastfeeding
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    The effects of Abilify during pregnancy have not been adequately studied. The drug is recommended only if its benefits are thought to outweigh the potential risk to the baby. If you are pregnant or planning to become pregnant, inform your doctor immediately.

    Breastfeeding is not recommended during Abilify therapy.


    Recommended dosage
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    The usual dose is 10 or 15 milligrams taken once a day. The doctor will wait at least 2 weeks before prescribing an increased dosage.


    Return to top

    Any medication taken in excess can have serious consequences. If you suspect an overdose, seek medical attention immediately.

    Symptoms of Abilify overdose may include:
    Sleepiness, vomiting

    Return to top



    [This Message was Edited on 10/14/2006]
  5. 1sweetie

    1sweetie New Member

    They are prescribing "off label". It can help with mood if one cannot take AD's and I can't. It is also to help with sensory overload. I knew it for for bi-polar but that is not my problem.

    It scares me when I read about it but it has helped with sensory overload, pain, and mood. I was crying easily. You can understand though why it scares me when you read the effects of Abilify and the reasons that it is normally prescribed. It sounds like a heavy hitter to me. They are not even giving me the dose that they would start a child though. It's 2 mg. It gives me a slight feeling of being wired though which gives you a feeling of energy.

    It really has changed my life but I'm afraid of the long term effects after reading Mikie's post. I hate to give up on something that is helping me so much though.

    I really appreciate all the info. If you here more please let me know.

    Thanks so much!

  6. charlie21

    charlie21 New Member

    I though there may be a logical reason for it being prescribed. To be honest if you read on mirapex, they don't really know the long term affect of the drug either. What are we to do. Not take anything, which would probably make us feel suicidal in the end, or take something longterm, which could still affect our lives in the future. If it is working for you, then I am very glad for you. Fibrohugs Charlie
  7. charlie21

    charlie21 New Member

  8. enjoysue

    enjoysue New Member

    I'd asked my pain doc for this last month and she was still reading up on it and was more concerned with the side effects and she said she would know by Mondays appointment if she will prescribe it.

    So far nothing has helped me so I am willing to try this. I appreciate the info.I just have a strong feeling that this will help as serotonin and dopamine 'stuff' doesn't seem to help me.

    I just don't know how expensive it will be for me but I am willing to borrow money from a friend to try it...that's how desperate I am.
  9. 1sweetie

    1sweetie New Member

    I just found your response when I did a search. Life has been crazy around my home. FIL in a head on car crash and he was at fault. We are in the process of moving him from the hospital to a care center. They only want $5k for 1 month and more than likely we would not recover the funds. Life isn't easy is it?

    I, like you and Hayleycole, feel like I don't have a choice now. Those meds have helped me so much. I really did not know of the long term effects until I read it on this thread. Yet without it, my life and the people around me are miserable and I don't know how much longer I could have held it together. I am really thankful that I can only take these really small doses and that it works. Keep us informed and I will do the same.
  10. charlie21

    charlie21 New Member

    Sorry about the accident, must have been scary, and I hope there will be a full recovery. I also hope with all the trauma of it, that it doesn't effect your health. I am now towards the end of the second week. I think Mirapex is doing a good job. I occasionally get the odd muscle spasm, but notice it is when the next tablet is due, so it must be doing the trick. Suffered a few headaches recently, had an extra bad one couple of days ago, couldn't even touch my head, so made it difficult to put it on a pillow. Checked my blood pressure, and it was 151/101, never has it been that high. Checked it again just now, and it is 140/95, still think it is a bit high. I am betablockers, so don't really understand why this is happening, however, has been a stressful day, and I am still chomping at the bit because of what someone said to me at work today, so probably have not calmed down yet. I am going to ask for another increase, because it works eventually, but a bit longer than it did before. Was taking it 3 hours before bed, but was starting to take longer for the restless legs to go, and you cannot sleep while your legs feel like that. I get it in my arms, and sometimes it feels like all over. I have had hardly any pain, which I think are caused by the muscle being so tight all the time don't know what you think. I still sometimes feel tired, not sure whether mirapex or FM. I cannot help you know wondering whether we have a form of parkinson's, because I virtually feel almost normal now, I have had some bladder irritation as well as mild tremors for some years now, as well as tingling arms and hands, also people with parkinson's have trouble sleeping like we do as well as pain - don't know what you think about this. I have started losing weight, did you? Would love to hear from you again. Charlie
  11. charlie21

    charlie21 New Member

    Hello Haley wil search for the article you are talking about. Did your psychiatrist offer you the mirapex, unless I have misunderstood what you have written. You said you are seeing your doctor on saturday, but you were already on the mirapex, so he probably won't mind increasing it. Can your psychiatrist not increase it then if he prescribed it for you in the first place, or did I get in wrong. I am having a rather anxious time of it, had trouble at work today with a collegue, but have felt a bit anxious all week. Not sure whether it is my hormones, or how it is and I am annoyed, or the medication. Charlie
  12. charlie21

    charlie21 New Member

    Yes it makes sense now what you have written. I am from the U.K., and it is 4.00 a.m. and cannot sleep, but on a positive note, I can sit at my computer, and cannot feel the restless legs anymore. I can lay in bed now, and feel really relaxed what a feeling! My first week I slept okay on Mirapex, but the second week, has been really hit and miss. I really what this sorted out, and I think an increase may do the job. Got a doctors appointment next tuesday, so hoping he will up my dose. What time is it where you are please. I will now need to take my diazepam (valium) to get me off to sleep again, or I will struggle tomorrow at work. It is pitch black outside and raining. Like listening to the rain, something very therapeutic about the sound of it. I only tend to get people from America this time of day, because I am up in the early hours, but have met some very nice people on this board. I have read your article, and I think it will go a long way to helping a lot of people. I am very curious about how it would effect any of our bedridden FM/CFS people. I think if I were in there situation, I would have a go wouldn't you. Looking forward to hearing from you. Fibrohugs Charlie
  13. charlie21

    charlie21 New Member

    Hayley, sorry cannot remember, what do you actually suffer from. Do you have parkinsons, or fm. Cannot for the life of me remember. Charlie21
  14. charlie21

    charlie21 New Member

    Hayley I am only taking mirapex to treat fm also. I feel apart from the not sleeping well, as if I am normal just now. I haven't done anything strenuous all week, so don't know whether I will still get the post exertional malaise or not. I had a bad flare whilst in cuba a couple of weeks ago, so perhaps I have had my turn, and I am merely going through a good patch, only time will tell. My dose is 0.125 just now, hope doctor will increase it enough so I can sleep. Well going back to bed now, take care. Charlie
  15. charlie21

    charlie21 New Member

  16. charlie21

    charlie21 New Member

  17. charlie21

    charlie21 New Member

    I have nothing against have tetenus jabs or flu jabs, in fact I am due for the flu jab the end of this month. I have been to see my doctor for the first time since he put me on mirapexin. I told him that I felt about 50% better, and he commented how well I looked. I told him that my nightime dose was taking a while to kick in, especially as I had taken it 3 hours before bed. He was very impressed with the results, in fact quite taken aback, and did admit that he didn't think it would do anything really, but was prepared to give it a go. He had changed my dose, and has increased it from 0.125 mg to 3 x daily to 180 microgrammes 1 BD, which I think is twice daily isn't it. My sleep has been retched, and I am feeling really drained from not sleeping more than 3 hours per night. He has put me on some herbal remedy to help me sleep, we will see LOL. Not taking my new dose of mirapexin until tomorrow, because they do not have any in stock, but I am glad to hear from you again, and please keep in touch. Sorry you are having a flare, hope I don't get one when I have the flu jab. Charlie
  18. charlie21

    charlie21 New Member

    Hello there, how are you doing. Just wanted to find out if you doctor has thought anymore about putting you on Mirapexin. I have just had my second increase, but won't start it until tomorrow, because they do not have it in stock. Apart from a bit of dizziness from time to time, I am 50% better than I have been in a long while. Just need to get my sleeping pattern sorted out, but hopefully the increase in the Mirapex may make a difference to me.
    Good luck. Charlie
  19. rockymtnmom

    rockymtnmom New Member

    Dear Charlie21,
    I am brand new to the board, but I had read an article on Mirapex recently, and was wondering if I could take it to my Dr. and have him try it on me. It was so encouraging reading your post, and the recent article was really positive, too (albeit with a small sample size). Glad to hear it is working for you. Thanks for sharing all that info, especially the side effects. I hope I can try it myself soon!
  20. charlie21

    charlie21 New Member

    Please do take a copy to your doctor. It is worth having a go. No doubt you have read all you need to know on all the posts I have been putting on this board. Just a quick update. Initially I was on a low dose three times a day at 0.125 mg, but it was not quite strong enough for me, because I could feel when the next tablet was due about an hour or two earlier. I would however recommend that you do start really low, because I am finding people being put onto the bigger doses straight off, don't stick with it because of the side-effects, sorry this is just my findings of course. I started last night 0.18mg, have only taken one last night, and woken up a bit tired this morning, but I did a lot of dreaming, which I did before this drug, but none the less got an extra two hours sleep, because I normally only get between two and three a night, so very tired. I believe once I get going with the higher dose which is now one twice a day, things may settle down. I have no stiffness in the mornings or during the day. No restless legs at bedtime, and the pain is down to a minimum. Even my doctor is astonished he told me. I just need to sort the sleep out. I am taking a herbal hypno which my doc wants to try me on before putting me on a more powerful drug. I think the plan is to try zopiclone next if the herbal things don't work, which they don't really. I feel I need deep sleep and at least for six hours. Have a go, but please persevere for the first couple of days, as they may make you dream a lot, but I didn't have bad ones, and they may make you slightly dizzy sometimes, but I am doing okay I have a full time job. Good luck, remember if you don't try you will never know. Charlie

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