I'm Not Qualified for FM Pain Med Trial

Discussion in 'Fibromyalgia Main Forum' started by NyroFan, Jun 9, 2006.

  1. NyroFan

    NyroFan New Member

    Well, they called regarding the investigational pain med trial. It would involve 9 months and 17 visits to their doctor. Where did I fail in the qualification process they did today:

    Will you give up all of the current pain medication you are on while on the investigational med.

    I said NO WAY

    and that was the end of it.

    They were supposed to call Monday morning, but I guess they decided on today, as the caller said they can not find too many people willing to do the trial.

    So-that's that.

    nyrofan
  2. fivesue

    fivesue New Member

    What if you got the placebo? Nine months in pain? Don't think so.

    I'll bet they don't get too many, either. Glad you explored it and let us know, though. Hope all is well with you.

    Sue
  3. Tibbiecow

    Tibbiecow New Member

    I would not give up my pain meds either.

    I probably would have asked about the trial. It is likely that they would have given you either a proven pain med or the new one. It could be that the proven one is either the one you already take, or maybe it would work better for you. When I see new information about pain meds, they generally describe, say, the difference between 'the long-acting morphine group' and 'the oxycontin group', and go on to describe the average dosage for patients on each drug, and what pain med they used for breakthrough pain.

    This tells me that 1) you will recieve pain meds, and 2) since the dose is not always the same, they titrate your dose so that you receive adequate pain relief.

    Also, they make note of how many patients continued the study, and how many drop out of each group because they did not get adequate relief. This tells me that you are not sentenced to 9 months of no pain meds if you agree to do the trial.

    I would call back and ask about more information. I would bet that their 'give up pain meds' question scared off way too many people who would otherwise be willing to try.

    If they told me, you will be given one or the other pain med, we titrate the dose so that you are getting good relief, and you agree to use only X (say, percocet, max 10 mg every 4 hours) for breakthrough pain, that would be, to me, worthwhile-I hope!

    Of course, if it were a choice between the chance of a placebo, or my pain meds that I take now, I think I would tell them where they could put their placebo!
  4. NyroFan

    NyroFan New Member

    Yes. I agree. Maybe I would be given a placebo. I might give them a call back and ask them a few questions. All they would tell me on the phone is that is was a 'pain medicine for Fibromyalgia' study. Just a study.

    And 17 doctor visits in 9 months? I said yes to that, but would have been disqualified if I said 'no'.

    I did not put much hope in this. For some reason these types of things never fall my way.

    I have been accepted by the University of North Carolina's program called 'Yes I Can'--a home version of their hospital program for people with arthritis and fibromyalgia.
    What is strange about that is that after I filled out the preliminary questions they sent me a letter saying they would be 'in touch' (sure, right) in 3 months.

    Well: nobody can say I do not try these crackpot things.

    nyrofan
  5. tonakay

    tonakay New Member

    I just remembered about your Monday call and went searching and found this from you. I totally agree with you.... NO WAY would I give up my pain meds. Too many of these new meds are ending up with so many side effects to them in the long run anyway.

    Hugz,
    Tona
  6. Marta608

    Marta608 Member

    And we really do need the research. Kind of a Catch-22, isn't it?

    Marta
  7. 121043

    121043 New Member

    was turned down because of the heart attack . I suppose you need to be in perfect health to find out a cure or help for your sickness !!
  8. 121043

    121043 New Member

    was turned down because of the heart attack . I suppose you need to be in perfect health to find out a cure or help for your sickness !!