I pesonally know of two people that took Methodone. It worked for one and was a nightmare for the other, they are no longer members of DS so we can't get any more info from them. As we have all stated before no one is the same with PKD and thats probably true with pain meds as well. Good luck honey and I hope you hear from others that can help you.

Norma...

I take methadone as my sustained release pain medication and find it works very well. I have both the cystic kidneys and the massive polycystic liver presentiation (my liver is bent on world domination, one body at a time, and is estimated to weight at least 25-30 pounds and is compressing everything in my abdomen, pelvis and chest and making me look quite pregnant--it hurts like hell to put it mildly). Methadone is the ONLY sustained release pain medication I take, and I have oxycodone immediate release (Percocet without the acetaminophen) for breakthrough pain (sustained release medication is called "background medication" in the UK; I think background medication is a more appropriate term, just as I think Polycystic Disease or Polycystic Syndrome, as PKD is called in most of the world, is a much more appropriate term for this disease...just my 2 cents).

Methadone is inexpensive (pennies per tablet). But you and your doctor need to know exactly how to take it and what to expect when taking it. Most people experience at least some if not overwhelming sedation on methadone (I don't, but I have a very unusual reaction to any medications that should cause sedation). The sedation efffect can also be delayed, occuring hours, days, weeks or even months after being on steady state dose. So just be careful and discuss the details of the medication with your doctor in detail. I have always been very cautious with any medication, especially pain medication, to the point of having my husband watch over me any time the dose of medication changes (especially at night) to ensure I have no problems with slowed breathing, etc. I also do my very best to only change one medication at a time so if there is a side effect, I can isolate what is causing it. That caution has served me very well over the years and has meant I've been able to figure out some allergies and adverse reactions to specific medications because they were to only "new" thing that changed.

Like all other opiods, it can cause severe constipation so establishing a consistent bowel regimine is critical (e.g. Colace twice per day and Miralax (PEG-3350, generic for Miralax) as needed) to keep your bowels moving. You start this at the same time you start the methadone (if you're not already on this regimine now). Do NOT wait until you have problems because it is incredibly difficult to try to fix the problem afterwards (I learned this when I started on OxyContin and actually had to stop taking it to allow my innards (with lots of help) to get back to normal, then restart taking the pain medication with Colace twice daily, etc.). I find methadone to be much less constipating than OxyContin or the other opiods, but I have only taken it with Colace twice daily; I wouldn't even consider trying it without that (esp not after my OxyContin experience!).

I like the methadone and find it very efffective (was on the old version of OxyContin before methadone; had a horrible reaction to the new OxyContin when it was released in 2010). There is no exact equivalency table that says XX mg of whatever you're on now equals XX mg of methadone, but the rule is "Go Low, Go Slow", so if you do decide to go with methadone (and please ignore the stigma associated with it in terms of its use for herion addiction; it's a very effective pain medication) be prepared to start at 5 mg twice per day. It has a very long half life (over 24 hours per dose) and only takes about 3-4 days to stabilize the dose in your blood stream. I've been on it for nearly 2 years and the dose has increased over that time, in part to find the right initial dose, and also to accomodate my ever-growing liver (which is now trying to crack a couple of ribs from the inside--how I love this experience!).

One recommendation regardless what pain medication(s) you go with: Keep it to yourself. Tell your spouse and your doctors, but otherwise, what you take is your own business and no one else's. If you need to carry your medication with you, get a copy of your prescription (just the prescription part of the printout, ideally one that includes the identification of the tablet, e.g. small round white tablet with XXX/XXX (whatever is printed on the tablet) and carry that with you with your tablets in a small container in your purse (so there will never be a question that those are your prescription medications and not meant for anyone else). And keep your medication locked up and out of sight of anyone who will be in your house, be it other family members or visitors (not only should medications NOT be kept in the medicine cabinet in the bathroom, but people snoop and you are responsible for keeping your pain medications safe and secure and away from prying eyes and sticky fingers and the person you trust the most may actually have the stickiest fingers when they see what you happen to be taking (and you end up short and in pain at the end of the month). I use a simple fire/waterproof safe kept out of sight in an unusual, but readily accessible to me (I can't bend over easily) location and have the key on my Medic Alert necklace at all times. It may seem like overkill, but I feel and my doctor(s) agree it's in the better safe than sorry category.

Good luck and please let us know how you're doing. I'll try to be a bit more regular at checking in.

:)

So good to hear from you Ruth. I thought of you you when I read the post from painalways, knowing that methadone has worked well for you, but didn't want to speak for you. Nobody could have detailed the pros and cons as well as you have. I stil haven't found any pain relief that I can tolerate, and have given up until the next episode of agony. I know that I will not touch Butrans patches again, though. The opioids I've tried have had overwhelming side effects - sedation, agitation, extreme distress, nausea- and didn't even help with the pain. Unfortunately, GPs seem to have little idea about appropriate treatment for chronic pain with acute episodes of crippling pain, so I am yet to get to grips with this aspect of PKD/PLD.

Wishing all who are in pain well.

Chewitt

Thank-you very much Ruth for all the information. It is very helpful. The Dr. at the pain clinic wants to start me on 1mg 3 x day. He has just left the decision up to me and asked me to do some research. I am so sorry to hear of your pain. Polycystic kidney disease is a terrible disease that destroys lives. I have terrible pain from the size of my kidneys. As a result it seems that I have lost my life to this disease. I can no longer work or do much of anything because the pain gets so bad, as soon as I am up on my feet and moving around. I saw my neph yesterday and asked her when I was going to get my life back? She said that she was sorry, but there was nothing she could do, because my function is still at 30%. All that can be done is to control the pain. I said the pain is only controlled as long as I don't do anything! Sorry for venting. I am just so frustrated and want my life back. I feel I am too young to be living this way!
Thanks again and I wish you all the best!!

1 mg 3 times per day is a good starting point; it's keeping with the go low, go slow philosophy. If you decide to go with the methadone, even though the dose seems to be low, please do start the bowel regimine at the same time and be careful with sedation. While we each have the same disease, we are each unique and how each of us respond to same dose of the same medication varies wildly.

I hope you and your doctor have discussed acceptable pain levels and you've decided on what is acceptable as a steady state pain level for you. No pain (0 on that pain chart) is simply unrealistic, so you need to pick something that you can live with, but won't put you in a fog or keep you in agony all the time. I tend to choose higher rather than lower numbers, so my choice is a 5 (I don't recommend it) and I tend to wait too long to take my breakthrough pain meds as well. What's more realistic is a 3 and then discuss with your doctor at what level you'll take your breakthrough pain medication as well (often it depends on where you are, what you are doing and the fact that a 7 can feel different on different days and even different times of the same day).

I wish you all the best and hope you find the methadone helps. And remember, 1 mg is a starting dose, so you can go up from there if/as needed.

Very gentle hugs,
Ruth