How many have been helped by Neurontin, Lyrica or Mirapex?

Discussion in 'Fibromyalgia Main Forum' started by kat-E, Mar 5, 2006.

  1. kat-E

    kat-E New Member

    This is my Rheumy's next line of defense and I am not very comfortable with the idea of taking these.

    I just wondered if many people have actually been helped long term taking them or if they worked for awhile and then stopped?

    Is it even worth the cost?

    Do they have any disappointing side effects?

    Thanks for your replies
  2. munch1958

    munch1958 Member

    Every one is different but I've tried both of these medications with no results. Many years ago, neurontin was
    one of the first medications for pain that I was given by my pain clinic. I took it for almost 2 months and finally gave up as it did not help me.

    The patent is running out on neurontin and generics will be available soon from other drug companies. IMHO, they've just reinvented it in Lyrica. I got samples of Lyrica on 3/10/06 from the pain clinic.

    I took 50 mg. 3x a day for about 6 days and gained almost 10 pounds! It made my insomnia worse and there was no pain relief. The samples were tossed in the garbage.

    The worst part is getting my hopes up that THIS is going to be the thing that helps. The frustrating crash when it doesn't work out is tough.

    [This Message was Edited on 03/05/2006]
  3. JLH

    JLH New Member

    I have been helped greatly (the pain) with Neurotin.

    I have never had any bad side effects from taking it.

    I have also been helped a lot by Cymbalta, with no side effects, except that I can't take the entire 60 mg in the morning due to it making me too sleepy all day. Instead, I take one 30 mg capsule in the AM and the other 30 mg capsule in the PM.

    For me, both are definitely worth it.


    Hugs,
    Janet
  4. Crispangel66

    Crispangel66 New Member

    I loved Neurontin and it really helped me with neuropathy, but after I got off of husband's insurance I could not longer afford it as the cost for the dose I was taking was like $250.00 and that was for generic.

    It would be good if you had insurance coverage and if you don't my dr recommended getting on that PPA (partnership for prescription assistance).

    You can even go online to www.ppara.org and fill out the paperwork to see if you quilify, but you can't get help if you have any prescription coverage.

    Good luck, Pamela
  5. cathugs

    cathugs New Member

    Istarted on lyrica about 3 mo. ago. started at 75 mil. twice daily. next mo. dr. increased it to 150 mg twice daily. gained about 15 lb. can't tell any difference in
    pain. stopped the stuff last week on my own. I have a weight problem any way.and the added pounds made every thing hurt much worse.
    cathugs xoxo
  6. Beadlady

    Beadlady Member

    a lot with pain and also seems to help me to function better--especially when I'm in places like a restaurant or shopping where there is a lot of different sounds whether it be voices or at certain stores where the scanning registers go beep, beep, beep in the loudest tone avaialble.

    I can tell if I don't take it not only pain wise, but my overall function.

    I've been on it for at least the last year--I was on it before when I had a concussion too.

    I call it my "Brain" pill.

    I do have health insurance that covers presc will a co-paytment & since it is available generic my co-pyt is really small.

    & I get the generic form. My presp is for me to take 2 pills 100 mg each 3 times a day, but I generally only take it 2 times a day.

    Its worth calling around to the different pharmacies in your area. Do you have a Costco store nearby? It is my undertstand that you do not have to be a member to buy prescribtions at their store.

    do you have any low cost clinics or sliding fee clinics where you might be able to get a prescp for a small co-payment?





    [This Message was Edited on 03/08/2006]
  7. and numbness/pain/tingling & stinging in my hands, but, after 3+ months on Lyrica, at 300mgs, my pain clinic doctor had me stop it, due to severe muscle twitching & jerking that was progressing, in my feet, legs, torso, arms, wrists... then my neck & head....when it struck my torso/neck & head in the middle of the night hard enough to "shoot me up out of bed!" and cause my head & shoulders to sort of flail around, sort of thrashing for a split second, before just dropping back down on the pillow again.... I called, scared to death!

    That is when I had to stop the Lyrica, immediately, with no taper... this month. March 2nd, I got no answer as to what it was, yet, but I will see my pain clinic doctor the 17th.

    It was the answer to my prayers though, until that had happened.. for me. It stopped the burning in my feet 100% after a few weeks of raising the dose up to 300mgs, and the pain in my hands also. and helped my trigeminal neuralgia pain quite a bit.. I'm on pain medication also, but, when I had to stop the Lyrica, the burning in my feet, and quite a bit of my face pain returned... the burning in my feet... 100% has returned....and it is unbearable to live with. I'm a completely different person with this pain in my life everyday. I'd forgotten how bad it hurt. I certainly wasn't missing it.


    Hope this helps.

    Also, the jerking & twitching I had, was bothersome, but not painful in the least bit.. just worried me, when my muscles were at rest, in a chair, or laying in bed, I just flopped around like a fish out of water.....however..that head/neck/shoulders/upper body thing, I was not* going to wait for that to happen again, I was terrified, and cried my eyes out when it'd happened, scared to death I was going to have a seizure next,


    Otherwise, I had found my perfect medication, for the foot pain, my feet burn like they've been cut to pieces by razors a lot of the time, so to have found a med to get rid of that pain, I was sooo happy! and have the feeling back in my hands, and no tingling/stinging... but.... I don't feel right being on medications that haven't been on the market for 5-10 years, either... I'd always said that...
    I don't like the ones that have been out for 25 years either, though.. ya know, but I take em....so....

    I don't know.....

    Sometimes we get desperate too...

    ((((((((hugs)))))))

    Laura

  8. Jeanne-in-Canada

    Jeanne-in-Canada New Member

  9. jakeg

    jakeg New Member

    Yes neuronton worked really well for the pain for me until I developed a severe skin rash that turned out to be caused by the neuronton.

    I would say give it a try it may help with the pain for you like it did for me. Just watch out for any signs of a rash that maybe starting and have it checked.

    Jake
  10. lin-z

    lin-z New Member

    First of all, everyone reacts differently, and I do not experience nerve pain, rather deep muscle aches and severe back problems. So, the neurontin did not help and i just weaned off the lyrica which did nothing. I actually liked cymbalta better for my pain but it seemed to lose its umph and the dr didnt want to increase the dose.

    My insurance covered both but it wasnt working. Now I am on lovely prednisone (5mg a day) and I go back to the rheumy on Monday and i hope we can wean off that.....ALTHO...it has helped with my pain which makes him think I have more of some arthritic stuff going on...also because of blood work levels...


    Good Luck to you, Lin-z
  11. FMsolider

    FMsolider New Member

    I had to pay 90 bucks for it!!! And it didn't do much. I feel it is too new and I don't want to be a guinee pig. I flared twice while on it.
  12. jasminesmema

    jasminesmema New Member

    Hello!
    I am brand new to this site! Stumbled upon it when I was looking for info to help with my disability case!
    This is a wonderful site!!! I look forward to "meeting" others!

    I have been on Neurontin 300mg tid for about 15 months now. I am very pleased. Also think it has been helpful managing my depression. Doesn't have any annoying side effects. I have gained weight but my dr says that is due to lack of physical exercise and not the medication itself. I asked about Lyrica when I saw that it was approved for fibromyalgia. She said it would benefit me any, and suggested I stay with the Neurontin. Frequently I have to go on a short course of Prednisone to calm down the inflammation of costochondritis. I just started Cymbalta which is an anti-depressant but which has also been proven to help with fibromyalgia pain. I may not think to check this board very often as I am new here but you are welcome to contact me at jasminesmema@yahoo.com. I will be more than happy to share whatever I have found that works!
    Peggy
  13. auntcon

    auntcon New Member

    The dr added Neurontin to my "mix" and it helped my pain so much but it made me so sleepy I couldn't function. I took it for 2 months so I didn't "get used to it" and it also made me sad.

    I'm off of it and now on Lamictal 4 wks so far so good.

    the mix
    Ultram max dose
    Cymbalta max dose
    hormone prempro

    con
  14. maris

    maris New Member

    Kat-e,

    My Mirapex Experience:

    I wanted to try Mirapex because I heard it helped with leg pain, the most problematic and painful area for me.

    My Doctor started me with two .25 mg tablets for three days, and then would add a tablet for another three days, until I was taking eight .25 mg tablets to equal 200 mgs.
    200 mgs is the dose for treating fibromyagia, which is much higher than for Parkinson's disease.

    I have to tell you that every time the medication increased I would go into a flare and become very nauseous.

    Having tried so many other meds, I was determinded to make this medication work for me. So I stuck it out, ate crackers, candied ginger, and drank ginger ale for the nausea.

    After about a week on the full dose, the nausea left me, and I noticed that I hadn't had leg pain in a very long time.
    I also lost ten pounds in two months. After being on it for five months, I lost a total of sixteen pounds. Then I leveled off and my weight stayed the same.

    I continue to have much less over all pain, hardly any leg pain, more energy, and less of an appetite. I make an effort to choose more nutrious foods since I don't eat as much as before, and I make sure I drink plenty of pure water.
    I also take a vitamin supplement every day that is made for fibromyalgia.

    So far Mirapex is working for me, but I had to go through some unpleasant side effects which eventually went away.

    I would do it all over again.

    I tried Neurontin for nearly a year with no results, and experienced weight gain.
    I have no experience with Lyrica but it sounds a lot like a cousin of Neurontin.

    I hope this is helpful to you.

    Maris


  15. jacampbell

    jacampbell New Member

    I take Lyrica. It helps alot. I was taking 75mg twice a day but it made me groggy so I just take 75mg at night and alittle of the pain came back but it is more tolerable than the spacy feeling I had all day. I really thought I was going stupid. It cost me a $50 copay but I get 60 pills so it works out to $25 a month.
  16. laura81655

    laura81655 New Member

    Everyone IS different, but many people quit too soon on these because of feeling tired. It took me about six monehs to get use to Neurontin and I had to adjust the dose also during this time. For me, Neurontin works best when combined with Elavil or Cymbalta, an antidepressant also for pain. I can only take the combo in the evening bcause of sleepyness.
    Good luck --
  17. lovethesun

    lovethesun New Member

    Pull up each of these for title in the search bar and you can see how more people reacted.I have nerve pain in my back.These drugs are good for nerve pain,so if that's part of your problem,they will work.Good Luck.Linda
  18. cmcd1070

    cmcd1070 New Member

    I was given Neurontin about 6 years ago for neurological problems they couldn't explain (it was FM but I wasn't Dx'd until 2 yrs ago). I took it for 3 months and was completely disabled during that time.

    I didn't develop problems with pain until 2 years ago so it wasn't prescribed for that. I gained alot of weight, slept about 20 hours a day and felt very depressed.

    My mother just started taking Neurontin about 4 months ago when she also developed strange neurological symptoms. She was Dx'd with RA though we share so many other health problems I wonder if she doesn't have FM instead.

    I wouldn't take Neurontin again, the sleepy side-effect is too much, even at the lowest possible dosage.
  19. Greenbean7

    Greenbean7 New Member

    Doc gave me samples of Lyrica for my shingles pain because it is for nerve pain. Puts me out like a light! I can only take it at night.

    I asked my neuro about it yesterday and he said it is one of the drugs that needs to build up in your system over time so he didn't think it would help with the shingles pain, especially since I can't take it and function!

    Hugzz
    Greenbean

    Stop and smell the puppies!
  20. Mikie

    Mikie Moderator

    It's also an antispasmodic med in a different family of drugs. It has helped with sleep, pain, sensory overload, tinnitus, muscle spasms, and tinnitus.

    Love, Mikie