My experience with my new pain meds Exalgo ER and Dilaudid IR

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rjbeck
Regular Member


Date Joined Feb 2008
Total Posts : 241
   Posted 9/19/2012 3:48 AM (GMT -6)   
For the last 6-7yr's I have been taking methadone for my long term pain med 90mg's daily and 15mg oxycodone x4 for breakthrough pain plus nucynta was added about 8months ago. another breakthrough pain med. Both of my breakthrough meds are on a PRN basis. Well 2 weeks ago I was switched to Exalgo 16mg (dilaudid time released) I take 4-tabs 64mg @5am everyday and use dilaudid 8mg 1-tab PRN up to 3 a day..I am on SSDI plus a Medicare plan for my meds. The Exalgo 16mg-120 tabs cost $2396 a month and needed a doctors preauth. My other long term medication methadone 270-10mg tabs cost $22 a month. Anyways after 2-weeks of using the 2 different dilaudids I am not happy with the results. It just doesn't give me the pain relief of my previous meds. My doctor has been trying a new method of switching pain meds around every 6-8months so the body doesn't get a chance to build up a tolerance. But I have given it a 100% try and have kept a pain log and I am just not getting the relief I expected from a different opiate. I hope this helps.. there were no bad reactions at all except for the heartburn was worse then expected. This happens to me with opiates...

ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 9/20/2012 6:21 PM (GMT -6)   
From my experience, you may want to spread out the Exalgo somewhat to improve absorption.....say, two in the morning and two at night, both at times when you haven't eaten in a long time and don't anticipate eating for at least another hour or two (ergo, between meals).

Also, you may want to get your doctor's permission to try taking the Dilaudid IR sublingually (under the tongue) and/or bucally (between your cheek and gums). This may also improve absorption, as the oral bioavailability of Hydromorphone varies widely from person to person. Obviously you don't want to change your route of administration (although sublingual, in this case, is really not a huge difference since you will generally be swallowing the dissolved pill matter once you can't hold it in your mouth any more) without talking to your doctor first, but in my experience most are fine with this.

You may find that this, plus time, improves your results.

Two weeks after switching from methadone -- particularly if it was a sudden switch and not a cross-taper -- is not NEARLY enough time to adjust. It takes 30-45 days to adjust after stopping methadone, in my experience and this is backed up by many other reports. So I would *expect* not to feel my best after only 2 weeks.....it's not at all necessarily the hydromorphone, but rather the dosages involved and the sheer nature of methadone. I'd talk to my doctor if I were you, but two weeks isn't nearly enough time to adjust from a methadone switch IME.

rjbeck
Regular Member


Date Joined Feb 2008
Total Posts : 241
   Posted 9/21/2012 7:19 AM (GMT -6)   
Thank you- Thank You .....I've been going nuts with this change. I was instructed to stop the methadone 90mg--Oxycodone 60mg and nucynta 300mg AT ONCE and go on the Exalgo 64mg's(4-16mg) 1-dose in the AM and then use 8mg's up to 3-tabs daily for breakthru. And it's been horrible I was so much more comfortable on the methadone and oxy's...I will talk to my doc and give her these suggestions which should be no problem. She is very open to many,many things...Thanks Again Beck
AVASCULAR-NECROSIS (AVN) in 6 joints. HIPS,KNEE'S and SHOULDERS.
Pulmonary @UNC put me in the permanently disabled category due to severe restrictive/obstructive pulmonary disease. SSDI since 2007
MED'S-methadone 45mg's Bid---oxycodone 30mg's Bid--nucynta 100mg-Prn
Pristiq-100mg QD-Xanax 1mg-prn Nexium-40mg

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24260
   Posted 9/21/2012 9:32 AM (GMT -6)   
i was put on a one week experiement with dilaluid, and found it totally useless for my level and type of pain, my oncologist quickly switched me back to Loratab once he found out. when i have been on dilaluid in IV form, as in the hospital, I thought it was a godsend. however, it sure doesn't seem to have the same effect in pill form.

hope you find the right mix and solution for you.

david in sc
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incont & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA 4/12 = 37.x
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries
Member of Prostate Cancer & Chronic Pain HW Communities since 10/2008
“I live in the weak and the wounded” – Session Nine (Movie)

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 9/21/2012 10:11 AM (GMT -6)   
Yeah, oral dilaudid has it's ups and downs for sure. The 2nd poster gave very good information about it.

I do take dilaudid 4mg for BT pain - but I can see that I'm already building tolerance to it (again) and have only used it this time... for about 3 months.

I will be curious to see if you end up staying on the Exalgo - how it works. My PM doc said a lot of CP patients have a hard time w/ it and it's 1x per day dosing.

Anyway, thanks for sharing.... and good luck figuring it all out. Hope you can find what works for you.

--Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 4822
   Posted 9/23/2012 4:33 AM (GMT -6)   
Hey RJ, I was just wondering how you were doing with the change?
I too have been on methadone for many many years for PM, I have thru the course of those years been put on other meds to see if they worked better,or every now and then a new Doc would be on the not liking methadone band wagon. For whatever reason I never made the change stick. I have not had alot of luck finding anything that works as well as the methadone for me.

Just switching was a nightmare in itself for me as I didnt do well with any of them as far as not suffering w/d's and at times I know due to that I couldnt get a good read on the pain relieving property of said meds. I understand that methadone is a very hard to switch drug as it take far more of something else to equal out to prevent w/d symptoms.

If I wasnt miserable from the w/ds on other meds I simply was sleeping my life away from the higher doses to make me comfortable. I think now after 10 years on the methadone I most likely will never be on anything different. I really have no problems with building tolerance and thru the years have been on very high doses to very low doses depending on whats going in my CP life at that point. Post op of course I always increase but as soon as possible I lower myself down again.

I use only the methadone and currently am not using a rescue med but have used them thru the years if needed. I dont take the methadone on a prn bases and take the entire dose at one time a day and it lasts me for the entire 24 hr period as long as I have not missed a dose for any reason. Dont ever have to run home to make sure I dont get slammed with pain because I didnt have meds with me when I went out that morning.

I dont have to clock watch ever anymore the way I did on hydro and oxy way back when! My Neuro has no problems with writing it and like you said it is cheap cheap cheap. My medicare part D pays for it now but before it kicked in I was paying out of pocket so it was never a hardship to get.

The lethargy at higher doses is the only real problem I have ever had,except of course the bathroom one but thats pretty much a opiate problem no matter what your on. If I have lethargy or the famous nodding out ppl complain about on methadone I lower my dose some and see if that helps or at times I have taken meds to counteract that.

So I completely see your concerns with not wanting to change and especially the prices of those meds shocked I couldnt do that not even with my part D as the higher the meds are at the pharm the higher the tier and the more my co-pay and that is after a huge run around between me and the carrier and the pharm and the Dr to make sure he has tried all the cheaper ones and this is a have to case! Then they still most likely will refuse to cover it.

Didnt mean to go into this long post was simply just wondering how you were doing with it.
" The best thing to hold onto in life is
each other"

Disabled since 1998 on SSD
DX: lft knee TKR. 6 rt knee surgeries for meniscus repair. Pars defect L-5 ,ddd at L3-4 S1. disc collapse at L-3 with nerve impingement. legally deaf,copd,rt shoulder repair 06. Memory deficit post encephalitis/migraines
MEDS: methadone,xanax,lyrica,zantac,maxide,K+,lasix,prempro

rjbeck
Regular Member


Date Joined Feb 2008
Total Posts : 241
   Posted 9/23/2012 5:12 AM (GMT -6)   
Hi nvrthesame98,
On Mon sept 24 I am calling my pain doc and switching back to methadone.I've had thing but problems from the 2 different dilaudids. The I.V. dilaudid was great but in pill form it's useless for me. I like the methadone and how it helps me do things I need to do.I also took my dose once a day in the AM and I was OK for the next 24hr's I do use breakthru sometimes.. I did have some minor w/d's from switching to the dilaudid but nothing I couldn't handle.

To sum it up the pills don't work for me-If I am given IV dilaudid in my pain pum after surgery it's OK. Thanks for the replies
AVASCULAR-NECROSIS (AVN) in 6 joints. HIPS,KNEE'S and SHOULDERS.
Pulmonary @UNC put me in the permanently disabled category due to severe restrictive/obstructive pulmonary disease. SSDI since 2007
MED'S-methadone 45mg's Bid---oxycodone 30mg's Bid--nucynta 100mg-Prn
Pristiq-100mg QD-Xanax 1mg-prn Nexium-40mg

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 9/23/2012 11:52 AM (GMT -6)   
It seems a bit strange that your Dr. wanted to change things around when you were getting such good relief from the Methadone....

I can see if you were not getting that relief and needing to go higher and higher on dosages that he wants to rotate meds....my Dr. has done this with me but we do every 3 years or so.

If things are going great....we don't rock the boat.

Hopefully your Dr. will have absolutely no problem going back to what you were on.

That's the thing about medications....it's never a one size fits all as one medication will be great for one person but not work at all for another. We just have to give them a 100% try which it seems like you have (many Drs. say about a month or so).

Hope you are having a good Sunday!
SB (Snowbunny) and the pup that snores (my yellow lab:))

3, two-level, cervical fusions over the past 11 years. The last one was anterior and posterior with lots of fun titanium!
Still have active herniations along with knee problems and another Morton's neuroma in left foot.
I try to find joy in each day even with chronic pain:)
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