Doc is trying to take me off Methadone after 8 years and put me on Exalgo. I have lots of questions

I have been on Methadone for the past 8 years. I take 3 (10mg) tabs 3 times a day. I do not take anything for breakthrough pain, since the methadone does fine. However, my last visit to my PC they told me becuase of a stat issued black label warning, my doctor is taking EVERYONE off methadone. In its place they are putting me on Exalgo. I never heard of this so I came home and did a little homework. I was very disappointed to find that it is and ER of Dilaudid. I have been on Dilaudid before, didnt work for me. I am really bumbed because the methadone was really working and had been working for me. I have been on others on the past, Perc, Narco, Fetyl, Vico, Soma, and I have had the doctors take me down to just the methadone. Its pretty bad when you find something that works and they wanna strip it away.

So, now i am faced with having to find another doctor. I am self pay and do not have medicaid or insurance. I am in the process of filing for disability. But until medicaid kicks in.... its cash pay for me. I have searched the web for Exalgo, and have not been too impressed with the results. Anyone got any input , please.......





thanks,
busted and disgusted

Post Edited (Tamahahawk) : 6/11/2013 11:14:19 AM (GMT-6)

Hi Tamahahawk, and welcome to the Forum - though I'm sorry of course that you've reason to join us.

I'm not familiar with the US medical system or the warnings on methadone...but I wonder if it relates to its potential to prolong the QT interval on the ECG? This is a serious but rare side effect that can be absolutely life threatening.

Have you tried raising with your doctor your concerns that you've already trialled most other narcotic meds with less success? I am thinking from the way you've written that some of them were prescribed under other doctors? Does your current doctor have access to those records?

If I'm correct about the reason behind the warning (if I'm not - disregard the following ;-) ) perhaps you could raise the question of ECG monitoring? I actually -have- a long QT as it is, but when I was fast running out of effective pain meds, my PM and cardiologist okay-ed me trying methadone provided we had a baseline for me before starting it, and had I stayed on it (I had intolerable nausea & vomiting so had to stop it after just a few days) we would have done a repeat ECG at regular intervals to make sure things were safe.

As far as ER dilaudid goes - my only experience of ER hydromorphone is a 24 hour formulation we have here called Jurnista. Bear in mind that meds are different for everyone, but for me, it was less effective than panadol and lasted barely 8 hours instead of 24.

You don't mention what sort of pain you have either. Maybe your doctor can look at adding other types of drug if it's appropriate for you?

All the best,

Laura

Almost all of the other meds that you were on were short acting, or what is referred to as immediate release medications, with the exception of the fentanyl.
There is no reason not to give the Exalgo a month's trial and at least one dosage adjustment before ruling it out as an option for pain medications.
Too often, patients want to stay with immediate release medications and avoid long acting versions because they seem to believe they are some how less effective, or not as potent. They are, the dosing schedule is different, but the same medications are in both the immediate release versions, and the extended release.
Dilaudid in whatever form you took it before, may not have worked as well for many reasons , but there is no reason not to give this medication a fair trial.

i did not read close enough. if you have no Rx coverage the price is between 500-1000$ to have an eqivalent to 30mg Methadone daily. even with my coverage it is not even a chance. what he told you about black-label is not quite accurate. because of a few years of unethical doctors employed by non-healthcare professionals (mob/mafia) in Florida a maybe Georgia and Alabama; the DEA rather than actually try to fix the problems they have come down on Pharmacist and Pharmacies and Doctors. in my State, VA a new federal law has been inacted, (think it's federal), 4 drugs:Metadone, Oxycodone (maybe only IR form), Fentanyl, and Hydromorphone (maybe only IR form) are under new rules about a national database of all filled scripts, some pharmacies like Walgreens can only stock 2 bottles of each, (one patient usually takes one to two stock bottles to fill Rx), and 2 more parts i forgot. one more: the billing Dx code must be written on Rx. it is not that your doctor cannot write for methadone, it is just less risk for him to give you Exalgo, not Dilaudid, Exalgo with which you may need breaktrough meds. even though you say Dilaudid never worked well for you most who say that are never given dose they should be given. if you could get this physician to titrate the Exalgo to the right dose and provide a breakthrough opioid, and one he is not scared of, Morphine Sulfate IR 15mg or 30mg is one IR that is not "black-labeld" it is rough switching pain doctors but if they would be willing to dial in doses i would give it a shot, that is with Rx coverage, if not you will have to go to a different doctor. with good records and compliance in past like it sounds like you have been it may be an easy thing to find a MD, for sure when you mention the money exalgo cost. again good luck NICK

Hello & welcome to the chronic pain forum. I wanted to ask too, I see nerve damage listed and wondered if by chance you are on one the meds for nerve pain or ever try any of them? Narcotics have little effect on nerve. Have you tried Neurotin, Lyrica, Cymbalta or Amitriptiline? I do know Neurotin is available in a generic too.

I hope you are able to make the transition from Methadone to something new with as few problems as possible. It sure is tough sometimes making changes in meds. Take care...Susie

rjbeck said...
I had the same problem from my last CP doc , they took my off of the methadone and put me on Exalgo but I have Medicare thru disability and my prescription was covered with a prior approval. I hated it and also found a new doctor and went back on the methadone. Just a heads up about the prescription program, Several of them will only help you if you are dead broke. No income.. If this doctor is worried about you being on 30mg's I really think it was a good idea that you found another doctor. Plus you are very lucky to find a doctor in NC that is accepting cash. for some reason most North Carolina pain doc's will not accept cash payments anymore. Good luck Randy..

Hey thanks for your input.

Well, I had my appointment with the PM this week, and just like the doc told me they decreased my methadone even more to 90. I was taking 3 (10mg) tabs 3 times a day. Now I am down to 1 (10mg) tab 3 times a day. This is a huge difference and my pain is not adjusting well. I was able to get the Exalgo filled and tried them. I wouldn't take them again if they were completely FREE. They did not work at all. So, now she has put me on OC 30mg. Take 1 every 12 hours.

Like I said in some of my earlier posts. I was able to find a doctor to get an appointment with. But, they are not a PM facility, and I am just unsure if they will keep me on the methadone. Most places now a days, trys to refer you to a PM clinic. Well, I am in the opposite end of the spectrum. I was already at a PM doc and need to go to a regular family doctor. So, time will tell. And after I have my first appointment with the "new" doc, I will drop in and let you guys know how it went. It sucks that now after all this time I am stuck trying to find a doctor to get the meds that "I KNOW" works for me. It is a constant game of cat and mouse.

I know there are good doctors that are genuinely concerned about their patients well being, and that truly make all attempts possible to help you get out of pain. (or at least live a semi-normal life with the use of meds) So, the saga continues. https://www.healingwell.com/community/emoticons/shakehead.gif

Thanks again for everyone's idea, and input. It is good to know we understand where each other are coming from. Pain is a "REAL" thing. And it does affect your life in one way or another.

I will keep ya posted,