Health Organization for Pudendal Education

Hey all,

Well, I just got off the phone with my pain dr. She is so awesome and great to work with. Would like your opinion on how this plan sounds. Again, I am doing well with the meds, but have some side effects I'm not happy with, and make me worry a bit. But all in all, doing pretty good. Here is the deal. Currently on Kadian 20 mg am and pm. In the middle of a Cymbalta taper. Was very interested in the Nortryptiline discussion. My pain is truly like a 1-2 and sometimes, 0 these days. My bothersome side effects are some tinnitus , and still have some generalized bone pain early a.m., likely withdrawal symptoms from Kadian. I sometimes have a little tremor in my hands to ( myoclonus, or intention tremor that seems to go with maybe when doses are peaking)
She and I talked and came up with this plan
1) taper off Cymbalta and see if pain is well controlled
2) change to Kadian 10 mg 3x a day
3) see if side effects improve

Then, if still troubled by side effects, taper off Kadian, and consider trying Nortryptiline. She says theoretically, if my disease state i.e. pain is well managed, it should prevent the increase in need for more and more opiods, she said that she has had some patients on it for 10 years at same dose. So, as you can see, I have a dilemma here, it boils down to a fear that I may need more and more opiods. However, I figure worst case scenario would be if I tapered off Kadian, tried Nortryptiline, and that was worse, I could go back to Kadian. But, on the other other other hand, that's a lot of months of changes and being miserable, and I continue to think about quality of life, and doing pretty well now. The side effects are not trivial. I'm sure you all can relate and hopefully you can decipher this dilemma. Counting on a response from you Violet! My best, Cora and thanks in advance

Hi Cora,

So, you all are still trying to figure out what may be side effects and what may be withdrawal from the Kadian? Since part (a) of your plan is to taper off the Cymbalta, I assume that you think some of the side effects are from Cymbalta? In which case, Nortryptiline may help stand in for the Cymbalta if you get to that point. I think the hope is that getting off of Cymbalta may remove some of the negative side effects you're experiencing, correct? And that then you'll still have great pain relief on the Kadian and not need to add Nortryptiline?

I know you have struggled with withdrawal in the past, so it's probably good that you are changing the Kadian dosing to three times a day. I bet more frequent dosing (albeit less med) is going to make you feel a lot better.

Since your pain has been really well managed by meds for a few years now, doesn't that give you some confidence that you won't need to steadily increase opiods? Have you had to significantly increase opiods since you first started?

Sorry, you know I'm a teacher...I respond with questions!

As an aside, how great is it that you can talk on the phone to your doctor! You've found a great doc in her.

Hugs
Lauren

Cora,

I am so happy for you that you have found such a great pain doctor. I wish I could find one of those! So did you try Embeda (I see in your signature) and then switch to Kadian? You said you are experiencing early a.m. bone pain and tinnitus which are likely withdraw from Kadian. Did you mean Cymbalta or are you tapering off both Cymbalta and Kadian right now? Wow, your pain is a 1-2 and 0 some days? That's awesome. Can I ask does that include normal sitting? I think it's interesting that you have chosen medication management vs. interventions unlike most people on this forum. (I know you are not alone and a lot of people chose medications to manage pain I just don't get to talk to them!) I know this isn't your question, but I was wondering if you would share a little of how you decided that rather than trying blocks or more invasive treatment options? I do not want surgery personally and would love to avoid it at all costs, but I can't seem to get my pain levels down. I don't tolerate narcotics well (or TCA's/SNRI's) so what other meds are there (already on Neurontin). Is oral morphine more easily tolerated than other narcotics like Vicodin? Or did you do ok on those?

Now for your question I think going from 20mg BID to 10mg TID sounds like a good plan. It's less meds at once and a little less total a day which should help if your side effects are indeed related to peak dosing. Are you just wanting to get off Cymbalta because of bad side effects? If your doctor said she has people that can stay on a dose of Kadin for 10 years without increasing I think that is really good. I do understand your fear of needing more and more meds though. I do think that sounds like a lot of months of changing and quality of life is of utmost importance. If it were me (and of course I don't know your whole situation/side effects/symptoms etc) I would probably continue the Cymbalta taper and try to wait to change the Kadin dose until I was completely off the Cymbalta so your pain doesn't get worse by decreasing the Kadin (and getting off Cymbalta) and that way you will know what exactly is causing your side effects. If you are still having side effects then you can decrease the Kadin to 10mg TID and hopefully that will resolve them. Then if you aren't getting good symptom relief you could try adding Nortriptyline. Does that make sense? I may not be understanding everything correctly but I hope maybe that helped. Correct me if I'm confused about any of this. I do hope you can get your side effects decreased. I know side effects can sometimes be almost as bad as the actual pain!

Thanks faith. First embeda had a recall so I switched to kadian. I've been on cymbalta since dx. Four years ago. We chose to taper cymbalta to see how much it is possibly causing side effects. So far taper is going well and less side effects and pain is not worse And ya next step is to change dosing of kadian to 10 mg 3x. A day and see if I get better coverage. My best news is that past few days my constipation Way way better and generalized bone pain is down. On a little trip with my husband for a few days and I tolerated the seven hour drive real well put seat way down listened to good stories and when I did this trip last fall it was much harder. Thx for your advice Oh. No inever did pursue nerve blocks as I went to pt for many years Nd they just did not push them the PTs as they were. Considered mostly diagnostic not therapeutic.
We were not interested in surgery so we blew off nerve blocks. Thx thx thx cora

Hi Cora,

Sounds like you have a good plan and I agree with Faith that it's a good idea to change one drug at a time so you can figure out which drug has which effect on you. I've never been a big fan of cymbalta because of the side effects so I hope getting off that will help eliminate some of the side effects you've been experiencing.

Kadian is extended release isn't it? So the advantage I can see of switching to 10 mg tid is that overall you would be taking less but hopefully it would still control your pain.

The problem with drugs is you just don't know until you try them and that process can be uncomfortable until you find what's right for you. Wish it wasn't that way but I guess that's reality. Your plan certainly makes sense and I hope it works for you.

Thanks Violet, and good news.. I've successfully weaned off the Cymbalta much easier than I suspected. Still having some hot flashes from it, but not too bad and the constipation is much better. I do have some more nerve pain since going off, but not so bad and the kadian is keeping it in check. The benefits of being off outweigh what I dealt with re: side effects. Just started the 10 mg tid kadian and I am taking a vicodin or 2 as needed in between. So far so good with that. So, thanks for your advice ladies and for listening. Sure helps to bounce ideas off one another now and then,
Thx
Cora