MILNACIPRAN Drug StudyGot a letter today

Discussion in 'Fibromyalgia Main Forum' started by Toga, Oct 24, 2006.

  1. Toga

    Toga Member

    Hi Everyone,

    Haven't been on the board for a while, had company for several days.

    I received a letter today from the Milnacipran Drug Study Coordinator. It seems that they want me to take part in a new clinical trial for FM patients who have previously been involved with the Milnacipran study.

    This is an open-label study in which participants will receive the actual drug. The sponsor expects this study to continue until the drug received FDA approval.

    It was too late in the day for me to call the office so I'm calling in the morning. I have some questions and some observations. I've been on Cymbalta since the drug study was over and have been doing well.

    Here's some of my thoughts and questions.

    1. Is the FDA getting close to approving this drug and they want to get the people involved in the previous study to get back on the drug so we'll be buying it once it is approved??? (Just my thought)

    2. Will our DR apmts be covered as they were during the first study. If so, this will save quite a bit of $ if you factor in the cost of whatever else we've been taking since the study was over.

    3. This will be a good study for me/others who have been on another drug since the study to see which one is really better.

    I was really ticked (as was my dr.) when after 9 months on the drug I was told that the study had been sold and I would only get the drug free for six months and not until FDA approval as I had originally been told.

    If I had known this from the beginning I'm not sure I would have stayed in the study. I went two months without any pain meds at all and six months with having to keep track of that god-forsaken hand-held computer thingy. I carried it everywhere. It seems like I only had one hand for six months because the other one was always holding onto it. It wasn't loud enough to sit down because I wouldn't hear it.

    Shaken-Have you heard from the Study? I know you were on it about the same time as I and you seemed to really improve on Milnacipran

    Any one else? - I'm curious to know if they have contacted everyone or (maybe) just those who were only on a partial dose???

    Thanks for reading.

    Toga
  2. Toga

    Toga Member

  3. Toga

    Toga Member

    Didn't anyone else receive a letter from their Milnacipran Drug Study?


    Toga
  4. Toga

    Toga Member

  5. schaken

    schaken New Member

    Hi Toga,

    No I have not received a letter from the drug study people.

    I received a phone call from the same company several months ago wanting me to get in the study for Cymbalta. I said no. I was not willing to do the 1 1/2 hour drive. I am on the drug for a small co-pay.

    I am doing quite well on cymbalta. Will not ever go back on milnapricin. Caused to much sweating and tiredness.

    On cymbalta I have very few problems.

    I am taking a total of 2 drugs now. cymbalta 30 mg 2 times daily and ambien CR at night.

    Still ache with the occassional bad time or period, when the weather changes.

    My hips have been hurting badly for 3 days now. But, That is better than I have been in 25 years.

    Other news, I am finally going to be a grandmother in March. It was a shock.

    My oldest is getting married in August to a very nice young lady. They will both be 30. She has FM. Part of the reason they got together is that my son is sooo understanding of her pain. Guess that is the reason I have this DD.


    Are you doing well

    Leslie
  6. Toga

    Toga Member

    Shaken,

    Good to hear from you. Sounds like you are doing pretty well. I guess I am too, most of the time.

    I wish I knew why I got that letter. I was told that they were sending it to people who had been in the previous study who had done well on Milnacipran.

    I'm on Cymbalta now too. I take 90 mg first thing each morning with my HBP med, Previcid and Tylonol. I still take 8-hr Tylonol at least twice a day, sometimes 3 times.

    I have decided not to go back on the Milnacipran. They sent me the contract and I read the whole thing. I would have to taper off Cymbalta which I don't think is too easy. Then there would be two weeks without anything (for pain that is.)Then a gradual build-up of Milnacipran starting at a very meager amount building to 200 mg a day.

    This would be until it is FDA approved which they expect is three to five years.

    The timing is just awful. I figure I would be out of commission during the entire time from now until well past the holidays. And its getting to be winter. I always am worse during the winter months.

    I've started hurting more already. If they had sent the letter in the Springtime, I might have done it.

    Congratulations on the grandbaby on the way. I have four grandkids, a girl 19, a boy 15, a girl 11, and a girl 8. My younest daughter who is mother of the three oldest is now pregnant with my fifth grandchild. She's past 35 and is having a rougher time then she did with the others. I always tell people that her insanity came from her father's side of the family, hee hee.

    But grandkids are the best. I'm crazy about mine. They are so much fun. My 15 year old grandson won first place in his freshman class for best costume yesterday. He went as a fat lady. He is 6'2" and skinny as a rail. So it was hilarious. He even wore one of my old wigs. and some black thigh highs that belonged to his older sister. They had little bows at the top that showed under his mini-skirt. What a nut!

    I have some sweating with Cymbalta. I also get hot. I just blame it on "hot flashes." That way people don't ask too many questions.

    So good to hear you are doing well. I bet those achy hips are the change in climate. It's hitting me lately in the shoulders, arms, and hands. I think some of it is OA too. I am that age.

    Take care everyone.

    Toga
  7. 69mach1

    69mach1 New Member

    the sweating was awful, i had to put powder everywhere you could imagine. raised my pulse and b.p.
    the hot flashes, wow! moods swung left and right. and the weight went way up. but back close to normal now. i did n't have problems getting off from that pill.

    jodie
  8. schaken

    schaken New Member

    Hey everyone,

    I take 2 doses of lyrica. Sorry I had brain fog yesterday. I don't take cymblata anymore. Started on Lyrica in August. I can take up to 3 doses per day. It is higher co-pay but worth it to me.

    My energy level is up and I don't sweat, get exhausted, or get the fog as bad.

    I hope everyone is well.

    Leslie