PM Visit today

[sandi1016]

I saw my PM today. We tried Opana this last month, and so far, it offers some relief but not a whole lot, as we are still in the dosage adjustment period. Today, he increased it to 40 mg bid and kept the Opana IR at 5 mg tid. Hopefully that will get me at a functional balance of manageable/tolerable pain levels and still allow me to function well.
I haven't had much luck with the Pamelor for the nerve pain , so after discussing it with the doctor, I am going to go back on the Lyrica since it worked pretty well for that, and hopefully find a way to manage the weight gain issues and the impact on my blood sugars. If worse comes to worse, I will have to go off it again, which is really a shame because it handles the extensive nerve pain pretty well. I hope that it doesn't come to that again.
He is staying for an extra week, so I was glad to hear that. They still have not found someone to replace him on a permanent basis. They will have one of the PM's from the city come up here once a week to see patients after he leaves.
Seems like I am going full circle.....I hoped for better pain relief from the Opana than I am seeing so far, but hopefully, we will have finally reached an adequate dosage now.
Sandi

[Mark N]

Sandi, glad to hear you aren't losing your PM yet but I know you will be wondering about who replaces him. It is good to hear you are getting a bit of relief and I hope the new dosage improves the pain control. Maybe you can take some steps to manage your weight and blood sugar so you can stay with the Lyrica since it did such a good job with your pain before.

Maybe this year you will make progress with your pain control and as your body heals from your recent surgery the CES will start to improve.

[sandi1016]

Sandi, glad to hear you aren't losing your PM yet but I know you will be wondering about who replaces him. It is good to hear you are getting a bit of relief and I hope the new dosage improves the pain control. Maybe you can take some steps to manage your weight and blood sugar so you can stay with the Lyrica since it did such a good job with your pain before.

Maybe this year you will make progress with your pain control and as your body heals from your recent surgery the CES will start to improve.

I hope so too Mark that the Opana works out. I really dislike trying different medications. I'd rather stick with one that works well enough that I can function in my daily life and not have to deal with the ups and downs. I am pretty fortunate though in that my PM is very good about listening and willing to adjust meds as needed, but he also knows that I want the minimum of medication that will allow me to function and be clearheaded. I know that pain free is not in my future, so allow me to be functional and we're good.....
As far as the Lyrica, despite a diet ( have to watch my intake because of the diabetes thing), I still gained quite a bit of weight, without an increase in food intake. It also raises my blood sugar for some strange reason.....my endocrinologist is the one who wanted me off it because of the effects it was having on my blood sugars and increasing the needs for diabetic medications.......but at the same time, the nerve damage demands Lyrica to keep those pain levels in check and to cut down some on the burning pain.
Another one of those trade off situations.....not sure which one is worse though, the weight gain and the effects it has on my blood sugars or the burning , shooting nerve pain ....neither one of them is pleasant to deal with.:o
It would be nice if the CES symptoms would start to improve, even a little bit. I would gladly settle for some improvement, since I know that all of it is not going anway....I'll take even 10 % and be very grateful for it....
Sandi

[gizmogirl]

I am sorry to hear that your pain is burning shooting type. I found that Lyrica had the same downsides and made me dopey, too at a low clinical dose, so I ate oatmeal and then strong (english breakfast)tea. The tea is less of a hit on my blood sugar than the coffee, although I still have to line the stomach with oatmeal first! If the only problem you were having with lyrica were sleepyness, and you have enough $$ to pay for provigal, I would suggest you get your doc to prescribe it off label (approved for narcolepsy).
If your pain were causing muscle spasms, I'd suggest you try Zanaflex (or better, the cheap generic tzanadine), because it works really well on nerve pain, but it used for nerve pain that causes spasms, originally in MS.
If you gain weight because the Lyrica turns you into a sedentary person, the tea and exercise might help?
Good luck
Jane

[sandi1016]

I am sorry to hear that your pain is burning shooting type. I found that Lyrica had the same downsides and made me dopey, too at a low clinical dose, so I ate oatmeal and then strong (english breakfast)tea. The tea is less of a hit on my blood sugar than the coffee, although I still have to line the stomach with oatmeal first! If the only problem you were having with lyrica were sleepyness, and you have enough $$ to pay for provigal, I would suggest you get your doc to prescribe it off label (approved for narcolepsy).
If your pain were causing muscle spasms, I'd suggest you try Zanaflex (or better, the cheap generic tzanadine), because it works really well on nerve pain, but it used for nerve pain that causes spasms, originally in MS.
If you gain weight because the Lyrica turns you into a sedentary person, the tea and exercise might help?
Good luck
Jane


Thanks Jane. It does cause muscle spasms, rather intense ones that cause my legs to buckle when they hit...front of thighs, back of thighs and of course behind the knees, it just knocks me off my feet. I took Zanaflex but now take Baclofen for them.
It's not being sedentary that is the problem. Lyrica causes swelling, weight gain and increases my diabetes medication needs....It didn't increase my appetite at all, and I stuck to my diet limitations easily, it just added on weight anyway.
I didn't have problems with sleepiness caused by the Lyrica outside of the first few days after going on it.....I know that normally goes away and if not, there are ways of dealing with it...
I started a diuretic because of the swelling and it did little to help it..if anything at all. So, it's something that I have to keep an eye on.......and hope that it gets better or stays manageable. If not, I will have to stop it again and try something else.
Sandi

[Mark N]

Sandi, I know about the weight gain as Cymbalta gives me a weight gain even though I don't increase my food intake. The post about Cymbalta on here is a bunch of BS as meds just work differently for each of us. I know what you mean about getting just a small improvement would be a big change. I hope that you realy get some improvement with the CES.

[BrokenBladder]

Sandi,

It sounds like your PM is getting on the right track with your meds. There is another poster on here, Deb, who use to take Opana. She really loved it, but I don't know what her dosage was. The only reason she had to go off of it was due to losing her insurance. Maybe you could PM her and she could answer any questions you have about the med. As for the Lyrica I tried it too. I didn't have weight gain issues with it but it made me off balance and so out of it. My doctor told me that it's a good med for some people, but for others it's a complete disaster.
I hope you are able to get your pain levels down with the increase in meds. It's so hard waiting to get the meds up to a dosage that gives us adequate pain relief.

[ejskennedy]

Hi Sandi.
Good for you for still trying. I know how emotionally and physically exhausting trying new meds can be. I am at 30+ different tries and just am starting 2 new ones, after having tried 2 news ones just a few weeks ago. I am very sensitive to side effects, but my pain is such that it is extremely difficult to treat. I usually am totally out of commission whenever I start a new one, but I have to keep trying right? Dont we all for our families? Know that you have empathy here from me and God bless you for keeping on keeping on.

Erin

[sandi1016]

Sandi, I know about the weight gain as Cymbalta gives me a weight gain even though I don't increase my food intake. The post about Cymbalta on here is a bunch of BS as meds just work differently for each of us. I know what you mean about getting just a small improvement would be a big change. I hope that you realy get some improvement with the CES.

Hi Mark,
I read the cymbalta thread. It's my opinion that it is ridiculous to expect a physician to know every single side effect that can happen with any particular drug when you stop to consider that physicians deal with how many different medications on the market for how many medical problems? It would be impossible to be familiar with every single possible side effect and how it may or may not come into play with a particular patient. We, as the patients are responsible for checking things out for ourselves, reading the information that the pharmacy provides and if something is not right in starting or taking a new medication, bringing it to our physicians attention.
Medicine is a science but it also is an art.
We are educated consumers of medical care, we have computers and the ability to search the internet for information.
Before I start a new medication, I come home and read about it and make an educated decision on whether or not I think that it is going to be helpful to me, and what the possible side effects are and if I believe it is worth the trade off.....that's what most of us do. When we expect our doctor's to know everything that there is to know about any medication, we are expecting them to be gods, and not doctors.
I know that many may not agree with me and that's okay....
I make a choice to take these medications, after doing research of my own.
If I have a problem after starting a medication, I discuss it with my doctor and yes, he's not been aware of some SE until I brought it to his attention, but he listens and stores that information for later use with another patient should they deal with the same SE.
Medications do work differently for each of us, and that's why we have a responsibility to do some research ourselves.
Sandi

[sandi1016]

Sandi,

It sounds like your PM is getting on the right track with your meds. There is another poster on here, Deb, who use to take Opana. She really loved it, but I don't know what her dosage was. The only reason she had to go off of it was due to losing her insurance. Maybe you could PM her and she could answer any questions you have about the med. As for the Lyrica I tried it too. I didn't have weight gain issues with it but it made me off balance and so out of it. My doctor told me that it's a good med for some people, but for others it's a complete disaster.
I hope you are able to get your pain levels down with the increase in meds. It's so hard waiting to get the meds up to a dosage that gives us adequate pain relief.

Hi BB,
He's very good to me. He listens and asks for my input, that's one of the big reasons that I am going to regret his leaving. It's nice to have a doctor/patient relationship like ours. :) I've read good and bad about Opana, but like any medication, it works well for some and not so well for others.
I will see if I can find her and PM her if I have any questions. I talked to one patient at my doctor's office who was on it and seemed to have really good results. She is on a lower dose than I am, but I had RSD in my right shoulder, arm and hand, so I am a bit more opiate tolerant than others might be.....so that is probably part of why we had to go up more than the standard conversion of .50% in the switch from Oxycontin to Opana......
I am hoping that the increase will work for me too. I have to wait for the pharmacy to order it in....should be tomorrow.
Sandi

[sandi1016]

:) Hi Sandi.
Good for you for still trying. I know how emotionally and physically exhausting trying new meds can be. I am at 30+ different tries and just am starting 2 new ones, after having tried 2 news ones just a few weeks ago. I am very sensitive to side effects, but my pain is such that it is extremely difficult to treat. I usually am totally out of commission whenever I start a new one, but I have to keep trying right? Dont we all for our families? Know that you have empathy here from me and God bless you for keeping on keeping on.

Erin

Hi Erin,
I hope these new meds will work well for you. I've found that it's best to give them a week to give your body time to adjust. It's like any medication, your body needs to figure out how it's going to respond. Hopefully, yours will adjust well to this new medication.
We all have to keep trying , to be able to function as best we can for ourselves and our families. They depend on us.
Thank you Erin........god bless you too.
Sandi