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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 7 of 7. This is the beginning of the thread.
Posted by Cairo on December 9, 2005, at 12:29:29
I am considering entering a study for the use of pregabalin in Fibromyalgia. It would be double blind and I would need to go off all meds for pain and sleep.
Right now I am on nortriptyline for pain as well as Klonopin and propranolol for panic attacks that were definitely induced by a trial of Topamax a couple of months ago. I would have thought that if the panic attacks were induced by the Topamax causing metabolic acidoses which in turn was caused by carbonic anhydrase inhibition, then when I weaned myself off the Topamax, the panic attacks would have abated, but they did not. The Klonopin helped the panic symptoms somewhat, but past a dose of 0.75mg, it causes depression and also causes my muscles to ache, like most other meds that I've tried that suppress or stimulate the HPA axis too much. SSRIs are out of the question as they all cause stiff neck and major muscle aches. Adding propranolol has helped only a bit. The nortriptyline seemed to work before the panic attacks began, but now seems to do nothing for pain.
I am weaning myself off the Klonopin, but it is a slow and painful process. I still get occasional symptoms of pounding heart and agitation, though I don't know if this is the panic attacks coming back or withdrawal symptoms from the Klonopin (I've only ever taken it only once a day at night).
I don't know if it would be better to go off all meds for the pregablin study as none seem to help all that much, or whether I'd be worsening my already shaky situation by sleeping worse and having these "panic" symptoms. The study is only for 3 months and I'm guessing that IF I receive the pregabalin (rather than placebo), it might help as Neurontin helped me a couple of years back, before they discontinued it due to weight gain and cognitive side effects. It also had a tendency to poop out, though restarting it helped relax muscles and was mildly anxiolytic. Past the 3 months, I could elect to continue/receive real pregabalin and I'd be under the care of a well-known Fibromyalgia researcher.
My local doctor options are nil as my Rheumatologist just closed her practice and moved out of state to write a book, my Internist will not treat Fibromyalgia, and my pdoc won't prescribe pregabalin off label for anxiety or something outside his area of expertise (the Neurontin lawsuits scare him - fair enough). Also, the other decent Rheumatologists are not taking new patients as they were inundated with my doc's patients after she left. So I have no one to follow me.
My questions are:
What did Topamax do that causes me to have continued panic attacks even after weaning (I never had one before Topamax)?
Are my symptoms attributed to panic attacks or Klonopin withdrawal (my pdoc said he hasn't seen Klonopin withdrawal symptoms especially at the low dose I was taking)?
Would it be crazy to go off all meds for this trial of pregabalin which I may or may not get and may or may not work?
It it's not advisable to not treat the symptoms, then what other medication(s) would you suggest?
Oh, the quandry, the decisions!
Thanks for any insights. My physician husband is just as stumped as I am that most meds don't work for me.
Cairo
Posted by Larry Hoover on December 9, 2005, at 12:56:10
In reply to Re: Entering study vs symptoms, posted by Cairo on December 9, 2005, at 12:29:29
I only feel able to address some specific points, so I've snipped heavily.
> I am considering entering a study for the use of pregabalin in Fibromyalgia. It would be double blind and I would need to go off all meds for pain and sleep.
Right there, that's a huge decision, isn't it?
> my pdoc won't prescribe pregabalin off label for anxiety or something outside his area of expertise (the Neurontin lawsuits scare him - fair enough).
The FDA approval was for neuropathic pain and neuralgia. I'm not clear on why you would need an off-label prescription, given fibromyalgia as a diagnosis.
> Would it be crazy to go off all meds for this trial of pregabalin which I may or may not get and may or may not work?
I do think so. Adding it to your present cocktail seems to be a far wiser decision, though I accept that you are having difficulty getting a doctor to do so.
> It it's not advisable to not treat the symptoms, then what other medication(s) would you suggest?
>
> Oh, the quandry, the decisions!
>
> Thanks for any insights. My physician husband is just as stumped as I am that most meds don't work for me.
>
> CairoYour husband is a physician? Can he not write the script for you?
I'm using Lyrica, and I tolerate it much better than I did Neurontin. It's helping, but nortriptyline is doing a big chunk of the work (proven by trying to reduce the dose). The idea of going off everything , and having a 50% chance of staying on nothing for three months, doesn't provide much incentive, as I see it.
Lar
Posted by Phillipa on December 9, 2005, at 22:16:11
In reply to Re: Entering study vs symptoms » Cairo, posted by Larry Hoover on December 9, 2005, at 12:56:10
Cairo I agree with Lar. Won't your husband write a script? Or one of his collegues if he doesn't feel confortable? Fondly, Phillipa
Posted by Cairo on December 9, 2005, at 23:38:39
In reply to Re: Entering study vs symptoms, posted by Phillipa on December 9, 2005, at 22:16:11
I get enough side effects from drugs that it would be better to have someone with some experience using Lyrica to prescribe it. Also, it is a schedule V medication, so prescribing it for a family member might raise red flags.
I've decided to forgo the study and shop around for a doctor to prescribe it. I agree that maybe it should be an add-on to nortriptyline. Maybe a Neurologist would do. My husband will ask around, though he's not impressed with the specialists he knows. Fibromyalgia is a tough disease to handle and many doctors know only the first or second line treatments, and are not familiar with refractory cases. I had a Neurologist who gave me Botox injections into the neck and should muscles imply that my treatment failure was somehow my fault as he never had a patient not respond before. Gave me the look like it was all in my head. I "fired" him quickly. He also could not see why I suggested nortriptyline, when he insisted that amitriptyline works just fine with his patients. Fine if you like being a poster child for Night of the Living Dead, I told him after a trial of Elavil.
It's not easy if you don't live in big cities with tertiary centers.
Thanks for your insight.
Cairo
Posted by Cairo on December 9, 2005, at 23:42:32
In reply to Re: Entering study vs symptoms » Cairo, posted by Larry Hoover on December 9, 2005, at 12:56:10
Larry,
Did you ever experience "poop out" with either Neurontin or Lyrica? What causes this and what recommendations would you have? I had it occur with Neurontin and am worried that this would occur with Lyrica also, as suggested by some Lyrica users awhile back on this forum. Thanks!
Cairo
Posted by Larry Hoover on December 10, 2005, at 10:38:04
In reply to Re: Entering study vs symptoms » Larry Hoover, posted by Cairo on December 9, 2005, at 23:42:32
> Larry,
>
> Did you ever experience "poop out" with either Neurontin or Lyrica?Nope. Couldn't tolerate Neurontin long enough to answer that question, and I've only been on Lyrica for eight weeks.
> What causes this and what recommendations would you have?
I don't know. Both drugs are supposed to work at the spinal cord, blocking delta2 variants of the alpha adrenoceptor, or something like that. I'm not surprised that the body has some way of overcoming having the spinal cord messed with.
I've heard it suggested that you could do a 2 months on, one month off pattern, to avoid any receptor adaptation. I'm going to shrug on that.
> I had it occur with Neurontin and am worried that this would occur with Lyrica also, as suggested by some Lyrica users awhile back on this forum. Thanks!
>
> CairoOne of the biggest differences between these two drugs is that Lyrica has linear pharmacokinetics. If you double the dose, you get double the blood level. Neurontin wasn't like that at all. Doubling the dose might raise the blood concentration by 20% (if you were already at a dose over 1200 mg/day). At least with Lyrica, you have linear dose response.
I don't know what else to say. We're all being guinea pigs with Lyrica.
Lar
P.S. Nortriptyline side effects were really bad, but it affected my pain so subtly, I didn't even notice much. Until I told my doctor I wanted to scrap it, and the pain came back before I got down very far on the dose.
And they have no explanation for why it can help pain. There's so much we don't know. Taking a drug in hopes a side effect might occur is not my idea of how medicine ought to work, but pain makes you try anything. <sigh>
Lar
Posted by zeugma on December 10, 2005, at 16:23:02
In reply to Re: Entering study vs symptoms » Cairo, posted by Larry Hoover on December 10, 2005, at 10:38:04
And they have no explanation for why it can help pain. There's so much we don't know. Taking a drug in hopes a side effect might occur is not my idea of how medicine ought to work, but pain makes you try anything. <sigh>>
nortriptyline is actually the most rational therapy in the psychotropic armaterium (sp.). i mean its dosing displays a clear window beneath which it is not very effective (for depression), and above which it is not effective. this is why plasma levels are routinely done with this drug. reactions to other meds vary wildly, but if you can get in the neighborhood of 100 ng/mL, then a month's trial will establish whether you are a responder or not. no other psychotropic to my knowledge displays such a window.
of course, the reason for the window is unknown. but at least there is a rational way of prescribing this drug. the rest of psychiatry is empiricism, and pet theory.
-z
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