Saw doctor about meds yesterday - need your opinions!

Discussion in 'Fibromyalgia Main Forum' started by nonnie1967, Oct 19, 2005.

  1. nonnie1967

    nonnie1967 New Member

    I saw my PCP yesterday...I was supposed to wait a month to see him, but moved it up by 9 days because I was miserable. I asked him if we could change some meds, because it just seems like the ones I'm on are not working. I'm getting at least a dozen migraines per month, and the FM pain is getting out of hand.

    I'm currently taking Topamax (50 mg/morning and 100 mg/night), Flexeril (10 mg/night), Cymbalta 60 mg., Ultram, Vicodin prn for headaches, and Zomig prn for migraines.

    Topamax, Cymbalta and Zomig are not on my insurance formulary. That means my copay for each is $55/month. Considering that my husband is currently out of work, that is a lot of money (heck, it's a lot of money even when he's working!). When it seems like Topamax and Cymbalta aren't doing anything but lowering my bank balance, it's galling to say the least. (Topamax seemed to work at first, but the last several months the migraines have come back with a vengeance. My neurologist upped my dosage from 100 mg/day to 150 mg/day, but it hasn't helped.)

    At my last appt. I told my doc that the Vicodin was making me itch. He said to take the Ultram instead. Well, the Ultram just doesn't do it for those major headaches - it doesn't even do it for the FM pain! So I kept taking the Vicodin and just took Benadryl for the itching. The trouble is, I am getting low on Vicodin and the doc doesn't want to give me more. (He is concerned that I am getting dependent on it because I have been taking it so long and need a higher dose to get pain relief.) He also believes that opioids do not work for FM pain "unless you take so much that you get loopy and you just don't care."

    He thinks the reason I am so symptomatic right now is because I am so stressed out and depressed. I am unwilling to say he's wrong - the money situation is really getting to me. My husband can't even collect unemployment, so my income is all we have to live on until he finds another job. (With two little kids and a ton of debt, that is a lot of pressure!) The doc decided to take me off the Cymbalta and put me on Zoloft and Elavil. We will also change the Flexeril to "as needed."

    We will meet again in 2 weeks to see if further changes are needed. He wants to make changes slowly, though, so we will know what changes are helping or not helping. We will also talk about the possibility of changing from Topamax to Neurontin at that time.

    My husband wonders - TWO anti-depressants? Is that OK? I wondered what you all thought about that. Has anyone here done a tricyclic (such as Elavil) at the same time as an SSRI (such as Zoloft)?

    I would also welcome your thoughts on other meds/issues I've brought up. Please share your wisdom with me!

    And thanks for slogging through my very long post. :)
  2. elsa

    elsa New Member


    Find another doctor. Narcotic pain medications do work quite well for some people with CFS/FM.

    There is nothing "wrong" with being physically dependent.

    There is also a hugh difference between being physically dependent and psychologically addicted and any MD knows that.

    Every MD under the sun also knows that patients on anti-depressants become DEPENDENT on them, ... they just don't share that with you nor is there a risk of them getting called on by DEA, etc.

    When a patient stops taking any AD they must taper off, not quit cold turkey. The brain relies on or has become dependent upon the AD drug to help regulate the nuerotransmitter the AD is targeted for. You have to give the brain time to "wean" off the help from the AD. That is physical dependence.

    I have tramadol, flexeril and rx ibuprofen for my pain. The combo and timing of them works well for me. If I needed something stronger though, my doctor wouldn't hesitate to rx the pain medication I need.

    It is an established fact that under treated pain eventually causes irreversible nerve damage. Again, most doctors know that, but they don't want the added responsibility of treating their patients properly.

    Look up Orachel's posts .... she lists a doctor's name who's book she has read that talks about treating CFS/FM pain properly. I've read her work ... just can't remember her last name. First name is Devin.

    Good luck with this. I have been meaning to post some research papers I recently came across that details dependence vs addiction. It goes into more detail then I have, but I think it will give you alittle peace of mind.

    Take care,

    Elsa

    PS ... I haven't had a migraine for several months now but I have Axert to take if one comes on. Also, if you raise naturally the serotonin, your headaches may deminish greatly. SSRI's don't create new serotonin, they recycle the amount of serotonin you already have.

    5-HTP is an excellent way to raise serotonin. I wouldn't take 5-HTP and multi-AD's at the same time however.

    E.


    [This Message was Edited on 10/19/2005]
  3. getfitat40

    getfitat40 New Member

    My Rheumy just added Elavil to my med regime. I already was taking Zoloft & Flexiril and I was told since dosages are small there would be no interaction problems. I also check on line for any interactions and found none. I have only been on the Elavil for about 2 1/2 weeks and I sense some better sleep.

    This is how I take them all -

    Flexiril
    10 mgs in the a.m. and another 10 mgs around 3 - he wants to keep my muscles relaxed during the day. I take the other one before bed. He wants me to move up to 20 mgs in the a.m. and 20 mgs around 3:00 in the afternoon - so far I can't do it because I get too sleepy. I am definitely feeling better during the day.

    Elavil
    I worked my way up to 20 mgs of Elavil - I was told that to have the Elavil work as an anti-depressant the script would be for 150-200 mgs...Elavil at this level is supposed to help get you to restorative sleep and some pain relief and is 'approved' for FMS. I am sleeping better - way better - sleeping as much as 5 hours straight.

    Zoloft
    I take 100 mgs before bed and I have been on it for about 5 years. Initially, my PCP put me on a low dose for depression as we were figuring out what was wrong with me...it helped me sleep better and I really don't feel any alteration to my moods - I still laugh and cry easily and when we tried to wean me off it - my sleep patterns were horribly disturbed.

    I wake up less groggy then I did with just the Zoloft and Flexiril. I actually seem to have increased energy during the day. I still crash at night and Saturdays are my sleep day to catch up...I work full time during the week.

    I hope this helps...pardon my ramblings! Nancy
  4. dafoefan

    dafoefan New Member

    You shouldn't stop Cymbalta cold turkey (unless you are going to a similar drug, such as Effexor). You should be tapering off.

    You can take elavil with an SSRI, that shouldn't be a problem. Elavil and Flexeril are similar drugs. Watch out, Flexeril made me put on 30 lbs within a month or so (never had a weight problem). What abouta klonpin for bed instead? They help alot of people sleep, it's available generic as well.

    I guess what concerns me is his opinion on pain meds, in my opinion, opiods work very well for my body. You can't work and have so much pressure in your life with migraines, it is going to wear you down. My husband takes atenolol, which is a cheap old medicine for blood pressure. His blood pressure is fine, but it helps with migraines. He takes it daily and rarely has them anymore. It works well with the elavil.

    For me neurontin is a great med. It took a couple of months before I knew it was working. It isn't a magic bullit. It is available generic now. I would try to find as many generic meds as possible to save you money.

    Have you taken zoloft before? I'm concerned you won't know what is or isn't working with changing so much at once. I really think you may feel sick going off the Cymbalta so fast. Personaly if I had some I would empty some of the med out of the capsule a little more each day to at least give your system a chance to catch up. It is good that you are going off cymbalta according to what elilily sent out yesterday about liver damage. I have been on it for about 5 weeks, I've been in bed for 3 of them. I started going off yesterday and am going back to effexor XR, which is similar and works OK for me.

    Good luck, try to listen to your body and see what you feel is working and what is not. I hope you find the relief you need soon. HTH, Lisa
  5. nonnie1967

    nonnie1967 New Member

    ...I really appreciate your responses! Nancy, that wasn't rambling at all! :) The Zoloft I'm supposed to take in the morning; the Elavil in the evening, in order to help me sleep better.

    Elsa, I'd be very interested in whatever research you have. I'm not ready to "kick this doc to the curb" QUITE yet - I really think he has my best interests at heart. He just needs some education, you know? (He knows a lot more about FMS than any other PCP I've ever seen, too.) So what I'm thinking is that once this stressful period is over, if the pain is still too much for the current medication to manage, I'll put together all the research I can find and ask him to review it.

    Does that sound reasonable?

    Lisa, I've been taking the Flexeril every night for 1 1/2 - 2 years now, so now I'm just replacing it with Elavil. Sounds like that will be OK. The doc says I can keep taking the Flexeril on as "as needed" basis only. I've only been on Cymbalta for 5 weeks (2 weeks on 30 mg and 3 weeks on 60 mg) so hopefully there won't be much trouble getting off it. I do still have some left, but is it safe to take partial doses when I'm taking the Elavil and Zoloft?

    I agree - it is really hard to work full-time with the migraines and the FMS pain, and then add in a husband, a 4 1/2 year-old and a 2 1/2 year-old at home who expect their wife and mommy to be there for them at least *some* of the time. I feel like I am letting everyone down, but I just can't be everything to everyone....
  6. renae1979

    renae1979 New Member

    I'm sorry to hear about your migraines. I get them terrible too!! Fortunately, Topamax has really helped me and I haven't gotten them for a while. I still get chronic daily headahces, but I've had those for as long as I can remember.

    Anyway, Topamax is now the only med that I'm on. I was on tons of different pain meds, anti-depressants, etc. and just felt over medicated. The meds weren't making me feel any better so I worked with my doctor to stop taking them (one by one) until I was not on anything. I found that I actually felt better without the meds!! So, now I have found that with Topamax, changing to a much less stressful job, eating a much healthier diet and adding mild yoga to my routine, I have been able to get most of my fibro symptoms under control. Except for my sleep. I just can't get that one under control.

    I'm not saying that this is for everyone, but I'm just suggesting that perhaps you should see a different doctor who can evaluate your meds situation with new eyes and determine if maybe you are over medicated with certain meds and can cut back on some and try others for different things. I hope that you can find a good doctor who really knows about fibro and its treatment. Maybe a good rhemy.
  7. JLH

    JLH New Member

    I used to take two anti-depressants at once--Prozac and Elavil at night for sleep. There were no problems.

    The stress is probably causing your headaches; however, has he ever tested your hormone levels to make sure they aren't hormone related?

    I take Neurotin and do well on it--and it helps my fibro pain. It is available in a generic (Gabapentin) so it might be cheaper.

    Check into some of these programs where you can get your meds free while your hubby is out of work.

    Take care,
    Janet

  8. nonnie1967

    nonnie1967 New Member

    Wow - that's great! My 2005 formulary didn't list that. That means I'd only have a $10 copay if I switched. I was thinking it would be $30...which is still better than the $55 I pay for Topamax. But $10 is LOADS better! :-D

    We did some hormone testing several months back. Everything was normal. I know that all of my symptoms - migraines as well as fibro pain - are much worse the week before my menstrual cycle hits and for the first couple of days after it hits. They are also worse mid-month, around ovulation time. So I KNOW that hormones play some kind of role in all of this.
  9. dafoefan

    dafoefan New Member

    How do you feel about taking BC pills? I found that I feel much better when I am on them. I don't get the hormonal headaches with the pill. Also, I take 3 mos in a row, 1 week off and then back 3 mos on again. I take yasmin bc pills, which are on my formulary, so I don't pay too much. They have a new pill called sesonale that is made to take 3 mos in a row, but they are not formulary. My gyno takes her pills the same way as me, so that seemed good enough. I have been very happy with this. I only have an ugly week a few times a year!

    Just some more thoughts - take care, Lisa
  10. jake123

    jake123 New Member

    My doctor just upped my Nortrytilene to 100 mg. at night and my topomax to 200 mg. am and200 mg. pm. I can take 3 Maxalt, and 3 Phenergan and 3 Flexeril for a bad migraine. The next day if the headache is still there, I can take 3 Indomethecin, 3 Phenergren, 3 Flexeril. Even if it is not a migraine and is just neck pain, back pain, aching shoulders, rib pain, pain that bear around my right boob. All these things improve with taking the same meds as the migraine meds. (Neurologist is Dr. Casaly) who has come up with this novel approach. And I've had three good days in a row but today not so good, for got my morning doses so my trial on this will extend through next week.
  11. nonnie1967

    nonnie1967 New Member

    I've never taken that. And I'm nowhere near 400 mg. total in Topamax. I guess that's what my neurologist meant when he said we could up my dosage quite a bit yet if it wasn't working anymore to prevent the migraines. Still, it doesn't help the FMS and the $55 copay is problematic. I like the $10 gabepentin copay as long as it would help the migraines even a little, while helping the FMS. :)

    Lisa, I used to take BCP but they made my migraines much worse. (I got terrible migraines when pregnant too.)
  12. bpmwriter

    bpmwriter New Member


    it makes me crazy that docs are so eager to yank pain meds as if they're devil spawn (they DO work for FM pain by the way), but are perfectly fine doling out psychiatric meds like candy at halloween. just wanted to vent.

    eddie
  13. lovethesun

    lovethesun New Member

    Also,Sams club and Costco are considerably cheaper on meds-one of mine was half the price.The name being referred to is Devin Starynal.She has fibro and has written some great books.Do a search on her name on the board or online

    Linda
  14. nonnie1967

    nonnie1967 New Member

    "The Fibromyalgia Advocate" looks AWESOME! If there's anyone who hasn't heard of it, be sure to check it out. I know I'll be getting it (and probably a copy for my doc, too) as soon as the $ is available....
    [This Message was Edited on 10/20/2005]