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Old 05-31-2012, 07:14 PM   #16
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

Hey Barb,

Sorry it's been a bit of a rough day, lot of rain making the pain shoot up, so I've not been on the boards much today.

So you've tried to get things to help your husband and daughter learn ways to communicate with you better including using sign language....but it's hard to get them to listen for very long. You guys are pretty busy huh...books sit in the bookcase and gather dust...I know that feeling.

Your anxiety gets pretty high on the scale also between an 8 - 10, it sounds like. And your Dr. put you on Inderal, which is a Beta Blocker for the heart arythmia's which could also be affected or affect the Anxiety.

Geez I bet you weren't getting much sleep having heart arythmia's at night and having to get up every 1/2 hour to pee, that had to be a pain!

Sounds like you still try to stay pretty active. And visiting with family can be a good boost for the lonely's...as long as you like your family. LOL

I'm sorry your not getting more feedback from others...the Boards been a little quiet lately. It can go through spells like that. I hope your Dr. appt goes well tomorrow and you accomplish the things you want that we've talked about.

Please let me know how it goes.

Take care,

Kat

 
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Old 06-01-2012, 05:27 PM   #17
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

Quote:
Originally Posted by katlin09 View Post
Hey Barb,

Sorry it's been a bit of a rough day, lot of rain making the pain shoot up, so I've not been on the boards much today.

So you've tried to get things to help your husband and daughter learn ways to communicate with you better including using sign language....but it's hard to get them to listen for very long. You guys are pretty busy huh...books sit in the bookcase and gather dust...I know that feeling.

Your anxiety gets pretty high on the scale also between an 8 - 10, it sounds like. And your Dr. put you on Inderal, which is a Beta Blocker for the heart arythmia's which could also be affected or affect the Anxiety.

Geez I bet you weren't getting much sleep having heart arythmia's at night and having to get up every 1/2 hour to pee, that had to be a pain!

Sounds like you still try to stay pretty active. And visiting with family can be a good boost for the lonely's...as long as you like your family. LOL

I'm sorry your not getting more feedback from others...the Boards been a little quiet lately. It can go through spells like that. I hope your Dr. appt goes well tomorrow and you accomplish the things you want that we've talked about.

Please let me know how it goes.

Take care,

Kat
Kat, thanks.

I'm Friday for appointment for doc. He was for refill for methadone, 15mg x 3.

Glad for low pain for 6-8#. I was smile for people... Lol
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Old 06-01-2012, 10:01 PM   #18
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

Hey Barb,

So you were happy with your Dr.'s appt.? He continued on the Methadone at 45mgs a day...and your pain was between a 6 - 8. That sounds a little lower than it was.

Did he not want to up it to the 50 - 60mgs like you talked about? What about the anxiety, did he give you anything for that?

Good to see you in a happier mood. Hope you have some fun and relaxation planned for the weekend.

Kat

 
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Old 11-27-2012, 03:32 PM   #19
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

Hi,
I too have been taken off the methadone 10 mg x 9 per day for 2 exalgo 16 mg
I am not sure if I like the exalgo.. any thoughts on this?
Suni

Last edited by Sunic; 11-27-2012 at 03:33 PM.

 
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Old 11-27-2012, 05:43 PM   #20
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

If after a trial period the new med isn't working for you (increased pain or too many side effects), let your doctor know. That way adjustments can be made. Often they start you at a lower dose than expected to ensure you do not get too much medication (as cross-tolerance is variable). Up to a 50% reduction is typical.

Reactions to meds vary so much its not too worthwhile to compare. Although consulting a conversion chart may give you an idea of if there is wiggle room in your dose, its unwise to rely on that to tell you how strong a med should be.

Although I haven't tried Exalgo, I have tried Dilaudid and just about everything else...I can say that for me, nothing compares to methadone. I get much better pain control and fewer side effects while on a lower equivalent dose. Because of this, I have had a very tough time finding anything to work for breakthrough.

What are you specifically feeling...withdrawal, increased pain, side effects, other, or a combo? Med switches can be rough since often you will have withdrawal just from the change (different receptors hit), even if the dose was high enough. Plus they take time to build up in your system. Thats in addition to the slow dose increase that is often needed to get back to the pain relief you had on the old med. I'd give it some time unless you are completely miserable. Hopefully you have a follow up soon? Best wishes.
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Old 11-28-2012, 08:16 PM   #21
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

Thank you totiosegirl for the information. Methodone did not work for me so he is putting me on the new one. I hope it works.. Been fighting pain for a very long time

 
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Old 11-28-2012, 08:51 PM   #22
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

Sunic: I'm curious, what were you on before the methadone, and was that helping? Do you think your doctor is letting you taper up to a reasonable dose, or are you just switching from med to med because he didn't want to go any higher? Although its desirable to be on as low as a dose as possible (and use adjunct therapies), if you're not being allowed to taper up to a dose which could be helpful, it'll just be luck if you can find a med where you get more bang for your buck with the conversion that those you have tried.

We all respond so differently to meds. Hope things turn out well for you. At least some pain meds are better than none! Although I am not at my goal pain levels, I spent so many years having my pain under treated that I'm still happy where I am now. Best wishes.
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Old 11-29-2012, 10:45 AM   #23
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

tortoisegirl: Methadone was the first med he tried me on. He is starting new one because he does not want to go any higher than 9 mg of Methadone. THe best I have ever felt was when I was on 30 mg od prednizone ( think I misspelled ) anyways that was the best. But they refuse to leave me on it any longer. And you are right, maybe I should just suck it up and live with the leval of pain I am at since like you say some pain meds are better than none. thank yoou again for your input. Sunic

 
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Old 10-04-2013, 12:15 PM   #24
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

Hi,

I have been on most of the long and short term pain meds off and on for 1/2 of my life. The past 10 years steady, past 3 couchbound with new disorders/diseases. Recently after a hospital week long stay they found dilaudud worked good with my body and I was changed to 6 8mg a day. I was still i pain but it worked the best of the others that had tried and able to atleast walk around my home. Now a new pain doctor has reduced it but added the long term Exalgo and my pain is worse. First it was given at 16mg then 32mg a day along with 3 of the 8mg of dilaudid. The pain is worse, it's causing my back to tighten up which makes my disc disease pain bad. The dilaudid I was orignally given worked much better but do need a break through pain med. My body is so sensitive, I just know what else to try.

Has anyone else here have problems with Exalgo?

I just want my 8mg six times a day back of diluadid and deal with the pain level I was living with.

 
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Old 10-04-2013, 05:45 PM   #25
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

So your overall Dilaudid daily dose has increased (from 48mg to 32+24=56mg), but your pain has increased? Interesting. I'd guess it is dosing related. Do they have you taking the Exalgo once a day? Maybe splitting it into two doses could help (16mg twice a day instead of 32mg once a day), especially if you notice your pain is worse in the hours before your dose. How long have you been on this dose? It can take a few weeks for the maximum benefit. Its also possible you have already built some tolerance to it.

With my opiate history and age I have a big issue with tolerance, and never have been able to reach the same pain control I had in the beginning with the pain meds. However, with a lot of med tweaking over the years (and other treatments), I'm in a good place now. Hang in there! I also am sensitive to meds or just don't plain respond to them. I take Dilaudid for breakthrough now, and methadone as my long acting med--its been the only one to work for me.

Short acting meds aren't typically a good choice for chronic pain, as they provide short bursts of pain relief, not steady around the clock relief. For example, didn't you have issues with waking up in a lot of pain since Dilaudid needs to be taken every 4-6 hours? You're already on the higher side as far as the proportion of your daily dose which is short acting (24 out of 56mg). I wonder if you would do better with a higher long acting dose and less short acting?

I would discuss your pain levels with your doctor at your next appointment, being specific, such as when you have what level of pain, such as before your next dose, or if you have breakthrough pain that isn't covered by the short acting form. See what plan they come up with and give it a try. I wouldn't make any specific requests/suggestions, but give your doctor enough info.

Its also important to talk about pain relief goals with your doctor, so you are both on the same page. 50% relief is usually a reasonable goal. This means different things to different people. Do you have a good pain specialist? I too have issues with meds and my pain responds to very few meds, so it took a lot of trial & error. Best wishes.
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Old 10-04-2013, 06:52 PM   #26
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Wink Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

Hi,

Thanks for writing back, I also noticed by last post had some missing words, lol.

For some reason my main pain med that I had been on for quite awhile(morphine) changed & made my back muscles tighten up, the same thing happened with oxycontin after years of being OK on it. When in the hopsital (in july) they gave me dilaudid and finally that part went away so when I was released (from sepsis, low B/P potassium, 75% of my blood levels abnormal, 4 infections, ect...I coded and almost died) they gave me the dilaudid for at home.

I was taking 8mg six times a day (before the Exalgo) and had felt the best I had in years. Then the doctor lowered the "D" and added 16mg of exalgo and my pain got worse, then this week she doubled the exalgo and lowered the "D" to only 3 8mg a day. My lower spine is killing me and causing pain from the pelvic down. So it seems my body likes the dilaudid but not the other but she wont change it back.

I really need a long lasting like you said but have tried so many over the years and now my body is very sensitive (much more then before). Just getting a IV in me is a challange or having a tube put down my throat will cause a infection. My health history is a long one, basically from my scalp to my toes are affected in one way or another with this or that disease or disorder along with a few antibiotic resistant infections. I do need a long lasting one that wont tighten up those muscles....each time it happens, when I take a 8 mg of "D" then the pain calms back down for 3.5 hours. This didnt happen when I was on the "D" only, the sleeping part doesnt bother me since I dont sleep very good anyway. It would be nice though not having to go back to a strict time table of taking it every 4 hours. Plus being on that alone without having a breakthrough pain option. Yes, it helps the best but the pain is still up high.


Any suggestions to a long lasting one that doesnt tighten the muscles would be great. I tried methadone years ago and it turned me into a robot but now I'm so much worse I'm willing to try anything to give me some sort of quailty of life w/o pain. At the age of 47 I have a DNR signed and POLST posted on my wall, it started in my teens but the last 3-4 years of bed/couch bound isnt a quality of life for me. Plus I cant take 1/2 the meds needed for my health conditions to keep my heart and organs functioning correctly so either way my body is slowly giving up. I'm at peace with that part, my soul is not my "body" and the body is ill and tired...all my dr's have told me my outcome which I already knew. If anyone knows our body the best it's us, but I do want to be as pain free and comfortable as possible.

Oh, the doctor originally made the changes 2-3 weeks ago then this past week changed the "E" to the 32 mg and lowered the "D" to the 3 times a day. Before that I had been on the "D" since July and once on the 8mg didnt ask for it to be changed but was still in pain. I'd be thrilled if I could hit a pain level 4

For today and the weekend I'm taking 1/2 a soma as needed and lowering the exalgo back to 16 mg and raising the dilaudid to one every 6 hrs until I call her Monday. The pain level is too high, being at a 7+ to 8+ all over my body is to much to handle 24/7. My AIM nurse wants me changed back also, but she can see the differance the long term form of it did to my pain level/body and how much better I was prior to it. She comes by 1-2 times a week so she's able to monitor me and contact doctors when changes like this need to be done but a doctor wont listen. I'm looking for another pain specialist but havent found any good ones in my area that deal with chronic pain/pallitive care patients.

Due to my hand pain excuse the "D" & "E", it was easier to type the dilaudid and exalgo that way

Does your methadone relax you along with helping the pain or does it give you energy? I need a more relaxing type due to my bone/muscles reaction. I have degenertive disc disease and other major spine problems as of the past 2 years, prior the spine was fine, just had all the other stuff going on but infections have attacked this poor body...

Thanks again for replying

 
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Old 10-04-2013, 08:34 PM   #27
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

Very old thread but I remember reading this one, everyone did such a great job decoding the language barrier....

 
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Old 10-04-2013, 09:20 PM   #28
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

Methadone is sedating for most folks, including me. Most opiates tend that way, except off the top of my head, oxycodone. Sounds like it might be worth re-trying methadone if your doctor would support that. Sorry you are struggling so much. I wonder what about the Exalgo instead of the Dilaudid causes the reaction, since it should be the same med, just longer acting. Must be some additive in it, same as some folks respond poorly or get more side effects on certain generics? Best wishes.
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Old 10-05-2013, 11:25 AM   #29
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

Cher45,

If you are still in the process of entertaining new med possibilities I think Oxymorphone is worth looking into. Granted, patients either respond well and hail it, or they don't respond and hate it. Having said that, I found it to have the lowest side effect profile of any of them, can be dosed up fairly high, is long acting even in IR form, doesn't activate or sedate, doesn't affect the gut, and provides powerful pain relief.

I'm currently taking my second choice Dilaudid, and as of a couple weeks ago was at the 48mg/d level, and like you I found it works very well. The only downside with Dilaudid is that it is so short acting that it really needs to be dosed (at least) 6x a day to stay reasonably comfortable round the clock.

Each Pharma firm has patented their own release mechanism, some of which don't seem to work as advertised -there are many complaints about the 'Contin drugs, Opana, Exalgo, Kadian etc... I prefer the immediate release varieties over the much more expensive and touchy LA versions.

All the best.

Iso~

 
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Old 10-07-2013, 04:04 PM   #30
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Re: Methadone 10mg x 3 versus Dilaudid 2mg x 2 and Exalgo 16mg x 2

Quote:
Originally Posted by tortoisegirl View Post
Methadone is sedating for most folks, including me. Most opiates tend that way, except off the top of my head, oxycodone. Sounds like it might be worth re-trying methadone if your doctor would support that. Sorry you are struggling so much. I wonder what about the Exalgo instead of the Dilaudid causes the reaction, since it should be the same med, just longer acting. Must be some additive in it, same as some folks respond poorly or get more side effects on certain generics? Best wishes.

You might be right, I never thouht of that. It could be a additive thats commonly used in LT or ER meds that my body cant handle.

The past 2 days I've split the "E" to 2 doses instead of taking the 2 16mg at the same time like the doctor wanted. Now I'm doing one at night and one in the morning and the tightness is 50% better. I have to take a dilaudid 1/2 hour after the dose to calm down the back pain the exalgo causes.

I have some methadone left from when i tried it last, I'm tempted to give it a try but know better.

Thanks so much!

Last edited by Cher45; 10-07-2013 at 04:05 PM.

 
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