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Kathi49
07-03-2008, 08:47 AM
And it was a good one! :)

I met with the PM, Lora, who handles the meds to go over everything from A-Z. But first I wanted to understand how this new clinic works. I still of course LOVE my regular PM but it was really nice to sit and chat with her. So, she basically explained she collaborates with him and his patients. I REALLY like her; super friendly, great sense of humor and just takes all the time in the world.

Anyway, here goes and I might get yelled at :eek::). But this is is what she had to say. First, she thought I looked good and thought I had a good handle on things which was nice. But I told her at first I didn't think I did because various meds just do not sit well with me at all. But she said, "No, actually you do have a good handle on it." And I asked her about CYP450 and WHAT THE HECK IS SO WRONG with me that I can't tolerate the nerve meds as an example. She said it is not so much a defiency but that some people are low and some people are high. In any case, the nerve meds and the anti-depressants are out. And I actually breathed a sigh of relief since they affect me so badly. Oh, forgot, I had asked about Keppra and she thought it would be just as bad; probably would turn me into a zombie. And I also asked about the opiates. I will apologize ahead of time because I know so many people need them and I do take Vicodin. But I also believe they can do more harm than good in the long run. But that is just my opinion and why I wanted to talk with her about it. I asked about a long acting med but she is hesistant; not because of a fear of prescribing something stronger, but simply because using the Duragesic was proof positive that something longer acting and stronger will just knock me out. And at this point in time that is just not acceptable to me. If I were worse or really couldn't get out and about I would reconsider.

I told her that my other PM is a little surprised because I am not tolerant of Vicodin but she said it is because I take so very little. And the plain and simple truth is just one maybe at times, even two a day is just fine. It just seems the lower I am the better off I am.

What she really wanted to know was how the Limbrel was working. I was honest and told her I had stopped it when my Gastro doc did my upper endoscopy simply because I wanted his input on it. And he is one that is all for it (and actually knew all about it) if it works rather than a traditional NSAID. But then I followed up by saying I had started it again and I swear I can feel difference. The only thing is is that sometimes I might get a slight headache or slight stomach upset. But it is not bad enough, not yet anyway, to stop it.

Anyway, my whole goal to be honest is NOT to be painfree because that will probably never happen. I just want to retain functionality and keep my cognitive abilities. The more I read and the more I question plus the more I hear, I would like to come off of Vicodin altogether and even Klonopin if possible.

But in the meantime she is saying just stay with the injections, stay on the Vicodin and Klonopin and to stay on the Limbrel and Lovaza. I swear that Lovaza is helping too. :)

And like just about every other doc I have, she is saying to stay active. So, I told her we are having a pool put in since aqua therapy also helps a great deal. Of course it is not an in ground which I would love but still. :) And then SHE brought up the fact that you can take that as a tax deduction and that it is well documented in my chart that aqua therapy is something I definitely need. So, I have been reading up on the IRS laws, etc. Because the MAIN goal of that pool IS to help manage the pain. Of course I can't go out in the winter but I have already been looking for some exercise things to put in it; same as what I used in aqua therapy. And, after all, my husband is the one that wanted to get one to help us both manage our pains. Anyway, in the long run she just said if I need a letter of medical necessity, another script or whatever, she would be happy to write it all up. :) And I know there was a post here sometime back about all of that. But now I can't find it. So, I guess I will just go to the IRS website and read up some more. Anyway, maybe I can or can't...just don't know. But it is definitely something that helps.

Okay, so there it all is in a nutshell and I am not sure I even spelled it out very well. But the bottom line is...I just want to manage all of this in other ways if possible.

slipnslide
07-03-2008, 10:38 AM
Good for you Kathi!:) I think we'd all like to get off some of these RX's so I completely understand you wanting to. Having a rapport with your PM's, and being able to discuss how you feel about it all, is awesome. I'm glad your visit went so well.:D

Nana4&cntn
07-03-2008, 11:12 AM
Kathi, I am happy to hear you had such a good PM appointment. I think it is wonderful you had so much time to discuss concerns and were listened to and things were explained so well. Good for you, for wanting to come off of your meds, as I know how sensitive you are! I have been able to discontinue 2 in the past couple months! I got rid of the patches as they didn't seem to work and the adhesive was causing major skin eruptions.

Again I am happy things went so well for you!

Kathi49
07-03-2008, 03:38 PM
Thanks Kim and Kathy,

I was afraid I would get yelled at LOL! I am just trying to look at it differently is what I am really trying to say and the PM had some very, very good points. Okay, so at least I am off the Nexium and off the Duragesic and back to where I was and quite frankly with the addition of Limbrel and Lovaza, and of course those shots I feel better. I am not 100% and never will be. But again, the docs and I mean most of them are saying just to keep moving no matter what. And no, they don't mean go out and kill yourself by doing too much. :) I don't know...let me see how it goes. God only knows if some other disc might blow out and I will be singing a different tune. :eek::) But for now I want to try anything I can to keep the two meds as low as possible. And I need more time with Limbrel too. :)

Kathy,

Good for you too! :) What was the other med you were able to stop?

Nana4&cntn
07-03-2008, 04:36 PM
Kathi, I was able to stop the Mylan duragesic and soma, don't get me wrong I am still on a boatload of meds. I still have horrible days and know I will never be medication free, But I am happy to be off the two I did.

Kathy

Jo6
07-04-2008, 03:04 PM
Job well done, Kathi. I hope you will continue to keeps things going.

take care, J

Kira
07-05-2008, 03:15 AM
You know, before going to a long-acting med, I think you would probably have to require a higher dose of short-acting meds (vicodin). I think that you are still taking about 1 vicodin per day, right?

My pain doc said that the 12.5 mcg/hr fentanyl patch was roughly equivalent to taking four 5 mg oxycodone tablets per day (20 mg oxycodone total). I think that roughly converts to about the same amount of hydrocodone. In other words, the 12.5 mcg/hr patch you recently tried was probably roughly equivalent to taking 20 mg of hydrocodone per day (either two of the 10 mg hydrocodone pills or four of the 5 mg hydrocodone pills)... which is more than you're taking on a daily basis.

So, unless your PM was able to find a way to give a low dose long-acting med, you would probably end up on an increased daily opioid dose if you switched from your one daily vicodin to a long-acting med. And we all should be taking the lowest dose that gives us reasonable/tolerable pain control, so it is good that you have been able to keep the med doses low. If your current regimen is working for you, then it makes sense to want to leave it the same.

The whole point of pain management is to maximize functioning & quality of life... so if your functioning and quality of life is worse on the higher doses and/or long-acting meds, then why not stick with what you know works for you?

I know how hard it is for you to find meds you can tolerate, so I am glad that the Limbrel seems to be helping.

Kathi49
07-05-2008, 07:38 AM
Kathy,

Glad to hear you could come off the Soma as well. :) I know what you mean though; there ARE good days and bad days. And where those spasms from he@@ came from the other day, I have no clue other than probably lifting something and putting it down in awkward position because the thing wasn't heavy. But then I ask myself does it require a muscle relaxer every day? No, just when it hits and only if heat or ice doesn't stop them.

And thank you Jo. :)

Kira,

Exactly! And, yes, I have come to the conclusion that short acting meds whether it be Vicodin or Norco just work better for me. But the Klonopin is long acting and it works better in that regard than the Xanax did. And you are so right about pain management as far as I am concerned; trying to maximize rather than take something that is a detriment. The Duragesic patch besides knocking me for a loop really made me feel weak. But, ya know, I tried it, I found out and no more! I had to cancel at least 3 PT appointments and found myself just staying home for fear of something happening. So, that was not good. Anyway, by just staying low and pushing past some of the pain is just where I prefer to be. I said that I don't expect to be painfree. But when I talk with all the docs, they are forever saying TRY to manage it in different ways. But I am not stupid either LOL! If the pain is really bad I will take an extra Vicodin or as I did lately; just get the injections and I had to wait a couple of months before I could get them. And maybe I just have a wacko system. :rolleyes::) But the pool will be put in here shortly; don't have install date yet but I would think sometime in the next two or three weeks. And getting in the water should help as it has been. :)

Mark N
07-06-2008, 06:47 PM
Kathi, glad to hear you had such a good visit with your PM. The point with managing our pain is that each of us are different and the doctor needs to tailor the meds to our pain and your doctor seems to understand that.