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New Here and I want to scream (med questions and all)

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Posted 11/18/2013 10:46 PM (GMT 0)
Hi I'm new (obviously). I'm a 36 yro female that just got my dx today after months of severe pain and years of mild/moderate pain, all of which seemed to be lingering pain after injuries. My rheumy wants to put me on Cymbalta or Savella, and I'm hesitant (read: scared to death based on things I've read about them, including warning letters sent out from the FDA) on these being as they're SNRI class meds and I've previously reacted badly to Effexor.

I'm taking Topamax and neurontin from my shrink for anxiety and PTSD, but she won't give me any advice on the SNRIs until I see her again, which is weeks from now, or if I should try increasing the neurotin first (I'm on a low dose, 1200mg). *sigh* I have a history of clinical depression, and bad med reactions also run in the family, so it's not just me. I'm the sole caretaker for a special-needs 12 year old, so I don't have the time for a serious mental breakdown because of a bad med reaction.

I have diverticulitis and problems with corn (but luckily no gluten issues), ADHDish, a bit OCD, Asperger's and sensory issues (so I'm not eating veggies, can't palette the things, some I can't even stand to be in the same house with when they're cooking). My pain is right now at mostly a dull roar through my lower back (where I injured it months ago), but when it flares it goes off the charts and through the hips and up the left side of my back. Physical causes were ruled out, physical therapy has been done, rheumy did a bunch of blood tests to check for other things. Pain started with a bad reaction to an antibiotic (can't take much of anything safely it seems). Not sure if any of that is relevant, but there you have it.
Posted 11/18/2013 11:05 PM (GMT 0)
Welcome. Sorry you are here, but at least you are being proactive.

I understand your hesitations on new meds, but what if "WHAT IF" they help with the problem? That's what I come back to, when I dither about a new med. I mean, weigh the pluses and the minuses and make your decision.

I have tried many meds in my FMS career. Some worked, other didn't, and some had side effects. But I gave all, but the d^%$&# statins, the old college try. 4-6 weeks to see what happens. The statins (for high cholesterol) I stopped after three weeks, because I was sleeping non-stop. I don't remember much from that period, but I do remember being afraid to drive.

If you don't try it, it doesn't work.
If you try it and stop after 2 days (or a week, or two), it doesn't work.
If you try it and there are side effects, you can stop, and it doesn't work.
If you try it, and it works, you are a lucky person.
Posted 11/18/2013 11:25 PM (GMT 0)
If I only had me to worry about it, it might be one thing. But there's my daughter, too. I have no other family to take care of her if something goes wrongs, and both her and my sister have been placed in emergency psychiatric care for reactions to such meds - that's my worry. Having had a reaction myself to an SNRI once I'm scared of stepping in that pool again.

Do any of these have more risk than others? Less? I've been suicidal in the past, and these carry that risk, too, though I'm not currently depressed it's something I have to consider when weighing all this, and I don't know enough about these meds to do it. I also have lowered (not optimal, but not the best) kidney function, and bordering on high cholesterol, and I'm not sure if these meds have risks there, either. Cymbalta I know can have issues for your liver, and while my current liver stats are fine, I like the occasional drink.

Every med has side effects, no getting around that, really. It's my personal history, my psychiatric history, the fact that I have no family within a thousand miles (and none that could get up here to help) if something did happen, or would have a clue how to handle my child (because of her own issues) that I'm confounded by this and looking for more information and ways to sort it out and come to an informed decision. The overall pros and cons of each med, does that make sense?

He also mentioned some other SNRI that I haven't been able to dig up, it started with a V, I hadn't heard of it before, he said it was new.
Posted 11/18/2013 11:36 PM (GMT 0)
I tried the Cymbalta and after a month or so I had a side affect it wasn't major but wasn't fun either (stomach) I was then put on Savella and had MAJOR anxiety kick in so I am now on Lyrica and so far I can say it has been working. I started off with a holy cow I am higher than a kite to now sometimes in dimlit rooms getting really sleepy.

I would try some out if you can and see if it helps at all the least bit.Once you get use to the meds it seems to not fight the pain as it did in the beginning but you know if you go off them within days you feel all that pain you had to begin with and it's horrible.

Posted 11/18/2013 11:38 PM (GMT 0)
Talk to your pharmacist or your doctor about your worries. Seriously-we are not doctors, and any advice here is strictly anecdotal. Everybody reacts differently.

BTW, at the top of the page here is Fibro 101--check it out! It's great!!
Posted 11/18/2013 11:41 PM (GMT 0)
I have several problems with medications myself. It's always a shot in the dark when you try something new, but how will you know if you don't try?

Do you have a friend close by who knows you well and can check in on you while you try the new meds?
Posted 11/18/2013 11:48 PM (GMT 0)
I asked for Lyrica first (as both daughter and I do best on the anti-seizure class meds), but he said because I'm on neurontin Lyrica would be pointless as it turns into the same thing and if the neurontin isn't helping the Lyrica won't, either. He brushed off the fact that the neurontin is a really low dose (this is I want to scream part, I get a lot of docs that don't want to listen to me - the ortho was even worse).

I have a boyfriend that can check on me and helps me out around the apartment a lot, but he can't take full time care of my kid, no. Nor can he pay my bills for me. I'm still working, much as it hurts to be on my feet as much as I am, but no choice. Jobs here are scarce to begin with, jobs that are close to home and fit my daughter's schedule even more so, so as much as it kills me some days, the bills must be paid and I can't risk a breakdown. I don't get sick leave or paid time off.

Post Edited (HaoZi) : 11/18/2013 4:54:27 PM (GMT-7)

Posted 11/19/2013 12:06 AM (GMT 0)
Oh, and I know it's all personal experiences, but really I trust some of that more than I trust what the drug companies and their reps say, KWIM? The good, the bad, the ugly. Personal experiences with different meds is what I want to hear. I'm well aware everyone reacts differently, even with the same dx, even within the same family - I've seen it.

So anything anyone can tell me about these meds that isn't a line coming from a doc/rep/company pushing it, is more information for me. Like I know neurontin works better when it's taken with a high-fat meal. Might be reasonable to assume the same for Lyrica since they're related, though I don't know for sure. Topamax works in the sodium channels of the brain, might be related to why it causes salt cravings.

Cymbalta having major stomach issues for fibro-mom is good info for me, because I do have digestive issues (thanks!) and had a similar problem with Chantix to the point I had to quit taking it before I could quit smoking. I already take something for anxiety, so that might be less of an issue for me, as I can just increase my anxiety med.
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