Milnacipran Drug Study - It's Over

Discussion in 'Fibromyalgia Main Forum' started by Toga, Oct 3, 2005.

  1. Toga

    Toga Member

    I went to the Drug Study Doctor today. It is the last day of my participation in the Milnacipran Drug Study.

    I have found out they are doing another Phase III Study. (not my doctor) This was supposed to be the last one but the company that has recently bought the study has decided to do another.

    So it may take another year or so for the drug to be FDA approved.

    I had decided (for now) to become a patient of this doctor and have discussed it with him for about ix months or so.

    The last few visits I have talked to him about what he is going to prescribe for me when the study is over. He has always told me Cymbalta and I thought it was to begin immediately.

    Imagine my shock when he told me that he wanted me to wait six weeks unless the pain becomes too bad.

    I was appalled. I am in the beginning stages of packing to move. I've already got my back in trouble from just two half days.

    After he left the room, I continued to complete the forms with all the questions. I then told the coordinator that I am moving and I won't be able to do all the work without something for the pain. She said she didn't understand either.

    I began to cry. I just didn't know what to do. She took my blood pressures and drew my blood and I started to leave. She said I should call him. I told her that he can call me. I said that I was too angry to deal with him right now and I just want to go home.

    Schaken, is this the reason you waited so long to get on Cymbalta? Is this standard procedure? Must you wait to begin a new medication to see just awful you feel so you can say Milnacipran is wonderful? I just don't understand.

    I guess I'm stupid. I thought I would get a few samples and an Rx and begin working up to a stable dose of the new drug. I was just praying it would work.

    I also thought I might discuss some of the other symtoms that I am having, like insomnia, IBS-C (that's making me feel so awful) the 32 lb weight gain I had on the medication, etc. etc. etc.

    A few minutes after I got home, (it takes over an hour to get home) the phone was ringing. It was the coordinator and she said she had talked to the doctor and they wanted to call in the Rx for me. I wanted to wait until tomorrow.

    I have just started with a new insurance company (10-1) and don't have a card yet. I should get it tomorrow.

    Then about 30 minutes later, the doctor himself called. I told him that I want to see if my insurance company will cover it. (He had also told me during the visit that many insurance companies won't cover it because it has not been FDA approved for FM, but for Depression. This was the first I had heard of that.) He insisted that he call it in so I finally gave him my pharmacy number.

    Then I called my insurance broker to have her look it up. After a lot of sessions on hold, she talked to someone at the insurance company and they will cover it. Then I had to call the pharmacy to have them hold the rx until I can get up there with the necessary changes in my insurance company.

    Maybe my anger and hurt were misplaced and maybe I misunderstood but I thought I would get replacement medication immediately. My ignorance, I guess

    I started this drug study being told that I would get the medication until FDA approval. Five months into the study I was told that it had been changed and I would only get it for six months. I had one more month to go with that stupid, stupid, stupid hand-held computer that beeps you at random times during the day. It was awful because you couldn't hear it. I had to carry it with me at all times. I couldn't even put it in a pocket because I could not hear it if there was any other noise in a room.

    No TV, no radio, no people talking, etc. etc. etc. And the stupid thing was heavy for its size. I did most everything with one hand. Sometimes I would sit it down if I was going to be in a particular room for a while and then maybe forget about it and go into another room for a while. Then I would usually miss a prompt and that was a no no.

    But I decided to remain on the study because I am not a quiter (I think that is spelled wrong, never have typed or written that word, I guess)and to tell the truth I was speechless about the change. That next visit is when I started asking about what would going to happen at the end of the study for me.

    I feel awful. All this stress has done a number on me. I feel like I threw a fit to get what I wanted. But I didn't cry loudly or anything. I just had uncontrollable tears rolling down my cheeks that I couldn't stop. And I did tell the coordinator how I felt that I had been let down badly at a really bad time in my life. Packing to move is hard enough without being in unbearable pain.

    I had always been a cooperative participant in this study. I followed all the rules, was never late or postponed an appointment, kept my sense of humor, and got along beautifully with both of the coordinators I dealt with.

    I had tried to talk to my husband for months that I wanted to be moved before the study was over but that didn't get done.

    And to top it off, I have lots of company expecting Thanksgiving at my house. My husband's family expects me to host Christmas Eve festivities. And my family postponed my turn last year for Christmas Day because I was not feeling well then. Oh yes, I always host a small New Year's Eve Party for friends. They all can't wait to "see my new home."

    I'll be in a new house yes, that is unfinished, no grass, boxes everywhere, and me feeling awful possibly. I probably won't be able to find my turkey roaster.

    I've told my husband that if I'm not in by Nov 1, I'm waiting until after the holidays. Each time I see that house I cannot believe that I'm going to be in less then a month. It'll take that long to clean up the construction mess.

    I need some prayers. I know others have much worse problems then I have but right now I'm feeling sorry for myself. I'll probably be ok tomorrow. These pity parties don't usually don't last that long. I usually "buck up" and "keep on keepin on."

    We've been building this house for three years and sometimes I wish we'd never started it. My husband keeps getting angry with me because I'm not excited about the new house. But I cannot overlook all the work that is involved with a move. It is overwhelming to me.

    He keeps forgetting I'm sick. I have to remind him almost daily that I just am not the person I used to be. I wake up each morning with all kinds of projects planned for the day but about 1:00 p.m. I just crash.

    Oh yes, before I hear that I should get my husband or daughter to help me pack let me tell you. He is emotionally, mentally unable to pack. He cannot do it. He thinks I'm too careful with things. He thinks we should just gather everything in Walmart bags and haul them over there. I'm not kidding guys. Can you imagine putting things away like that?

    When he "helps" me do anything, we always end of arguing or I just give up and take a shower.

    My daughter goes too fast for me. I need to sort a little and get rid of 16 years of stuff. I've been feeling bad for years without knowing what was wrong and have not been good about cleaning out closets, cabinets, etc. I was dx'd about 17 months ago and spent a year of that time on the drug study. I suffer from perfectionism a little I must admit and like to do things right.

    I'm so sorry this is so long but I'm a wreck. I must admit that it has helped just to write it all down. You all are wonderful. Especially those of you that have read this far ;-). Those of you who have already given up and gone to another thread, I can't say I blame you.

    If any of you have been on Milnacipran and then Cymbalta I would love to hear how it has affected you. I am so apprehensive. If I was just not in the middle of this move I think I could cope.


  2. baybblu

    baybblu New Member

    Dear Toga,
    Girl I feel your pain. I am on Cymbalta now and have been for 4 months. After 3 days of starting it I felt 25 percent of the morning pain leave me. It was a God Send to me. I have had fibro for 18 years and have been on so many different kinds of RX that I wouldn't know where to start.

    I also understand how frustrating it is when family members think that we are fine because we look fine on the outside.
    Please don't give up, I know that you will get through this.

    I Hope that Cymbalta works so well that you feel like a New Women.

    Good Luck
  3. Toga

    Toga Member

    I wrote my rant late last night and now I feel a little stupid. I'm just so apprehensive.

    So far, I don't feel awful. I'm going to the pharmacy this afternoon and then meet the closet guy at the new house.

    Hope I can think straight enough to make decisions. I feel kind of foggy. It will be nice to have some shelving, etc in my closets though.

  4. schaken

    schaken New Member

    Dear Toga,
    I'm sooo sorry that all this pressure is on you right now.

    No It was my pure stubborness to see a certain Doctor that made me wait so long to get on cymbalta. She was on maternity leave. I did not want to see anyone else.

    Slept last night. Only woke once to use bathroom.

    Drowiness is gone now that i'm taking cymbalta at night.

    Still in alot of pain despite high dose.

    I'll be praying for you. No you and I both are not quitters.

  5. fivesue

    fivesue New Member

    You have way too much on your plate right now, and I don't know how you are doing what you are doing...if you know what I mean. You must be an awesome person.

    I, also, have never been on either med although I'm thinking of asking about changing from Effexor to Cymbalta...but I just want you to know I will pray for you...for strength and for relief of your pain and your struggle. Building a house when one is feeling good is a horrid stress; I can't imagine doing it with the DD.

    Take care of yourself. And, please don't expect more from yourself than you can do.

  6. ilovecats94

    ilovecats94 New Member

    If I had to move right now I would go nuts! I thought we would be living here for the rest of our lives, but hubby said he couldn't deal with the stairs here (2 story house). I just hope by the time he wants to move, that I am dead and gone.

    Moving is so hard and when we moved into this house 17 years ago it was a new house also. I know how much work that is and back then I didn't have FMS and I still struggled with everything.

    Sorry you had that problem with your doc. Our doc stopped taking our insurance on 7/1/05, so I am having to see him out of network and paying out of pocket for bills. I am scared to change doctor's because I get Xanax and Lortabs and I doubt I will get them with another doc.

    I wish you all the luck in the world in your move and I hope you'll feel better. Many prayers to you.

  7. Toga

    Toga Member

    regarding building a new house. Its wonderful to get a new home but when your husband is the contractor and is trying to get things done as inexpensively as possible it takes a long time.

    We wait for subs to do things on the evenings or weekends and I do mean WAIT. We done this now 4 times. We've remodeled two homes. I'm tired of it.

    My dream was to live in the same home and watch the trees grow. Maybe do a little update now and then.

    Don't get me wrong, I do love (or at least I will) the new house but this time its so hard. I do hope its the last time but with my husband, you never know.

    Maybe I should just stay packed ;-)

    Shaken, good you are doing well but it sounds like Cymbalta is not working as well as Milnacipran. I'll let you know how it goes with me.

    I'm giving some thought to adding cherry juice or cherry pills to my routine. I don't think I can take tramadol or vicodin except in small doses. I get all itchy and I have skin problems anyway.

    And I don't think I would want to go the route of stronger stuff even if I could get a doctor to rx it.

    Going to bed now. I am starting an exercise class for arthritics tomorrow morning. I thought FM would qualify me for this. Hope I like it.

    You are all wonderful.


  8. Toga

    Toga Member

    I finally got my rx for Cymbalta today. It is for 20 mg. Am I wrong but shouldn't I start with 30 mg?

    I'm going to give it a try because I have nothing else to do. I'm not too optomistic.

    I'm really achy tonight.

    I may start another thread re: dosage of Cymbalta and see what you all think.

    There are 60 pills in the bottle with no refills. Maybe he wants to increase it after a few weeks. Who knows what he's thinking. I had such high hopes for this doctor.


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