Opinions - Opiate Suggestions?

[baZING]

Okay, here's some background:
SWIM has had surgery on his tailbone 7 (count em! 7!) times. After the sixth he was left in a great deal of pain that was untreated after the standard 2 week recovery period. SWIM's doc wasn't stingy with meds, really, even though he wasn't a PM doctor and just a surgeon... it was more that SWIM was sort of hoping he'd feel better almost from an emotional standpoint. While he loves opiates (Doc had him on percs which did him all right, especially since it had been a while) he was so tired of all the surgeries he just wanted to be better without the drugs. SWIM had another- the seventh- surgery 8 weeks ago. After 3-4 weeks of dealing with the surgeon (a different one) who was also pretty generous with the meds, he went to a PM doctor. Doc was good, prescribed plenty, experimented with lotsa different meds, etc. All of this aside, some general information about SWIM: he has a natural opiate "tolerance." What's meant by this is his body absorbs opiates pretty quickly. They tend to work (depending on which medication) but for example, when he was on the percs, he had to redose every 3-3.5 hours and that was really much longer than he even wanted to wait for pain relief. (not only wanted, the pain came back in about 2 hrs after oral dosing).

Important: At various times and various doses, SWIM has been on tylenol with codeine, hydrocodone (Vicodin), Transdermal Fentanyl, Morphine (both ER and IR), Oxymorphone (Opana ER), and Oxycodone (Percocet, Percodan, Oxy IR and Oxycontin) the last of which he is on now... 40 mg Oxcontin every 12 hours and 10mg IR for breakthrough pain as needed, max two doses a day of that. (It's not working for the pain at all. Including the -contin, that is.)

The problems with those medications were: too weak (codeine and Vicodin), Bothered SWIM's skin and made him sick (Fent), gave SWIM TERRIBLE anxiety (morphine), and made SWIM a little sick/SWIM just didn't like it (Oxymorphone). SWIM is convinced oxycontin and oxyIR might be the answer (in a higher dose) BUT he thinks he may need to get off of it for a while. He knows all opiates are slightly different and the oxy just hasn't been doing it for SWIM. He's been on it for too long at a stretch he thinks... but maybe a decent dose increase is really all that's needed. SWIM doesn't know.

So the QUESTION is:
What comes recommended from the land of opiates not mentioned? SWIM is a little desperate for something that works (and frankly he wouldn't mind having something that might give him a little or a lot of a buzz, even though he generally takes his meds correctly. He would like the option!) He has never been on hydromorphone but that's about the last remaining thing SWIM can think of that he's never touched. He is sure there are more that he just can't think about. He would rather not be on methadone and he only uses prescribed medication; as in no H for SWIM! And in terms of best effectiveness, SWIM never bangs. He is open to anything/everything that is effective either by eating/swallowing/chewing, snorting, or plugging. Any help and ideas would make SWIM a happy camper.

If SWIM has been on everything SWIY can think of too, that's okay. He'd just really appreciate any brilliant insight.

[desertimplant]

SWIM will take a stab...not sure how much of an "expert" he is but there is 9 years of experience so that may count for something.
Following 10 surgeries and a killer staph infection on an implant gone very wrong,
SWIM does have lots of time spent working through the pain control maze. Non-drug approaches were tried as well as pain meds at various times. The Tenze unit mostly annoyed SWIm and served as a distraction more than actual pain reduction. The longer story shortened, post surgical meds starting with Oxycontin 20mg 3\daily and 5mg oxycodone IR's for Break-thru. SWIM was fairly opiate naive so initially they seem to reduce pain to a manageable level. (Note, surgeon initially followed label exactly and prescribed 2\daily of the ER med...despite what the mfr says, they are really only effective for ~8 hours for SWIM...and he was gobbling the IR's too fast.
Another revision surgery occurred and meds had to be upped to 60mg ER 3\day and 15mg IR's...this was a relatively stable place with few side effects but only seemed to work for about 8-10 months before it was no longer keeping the pain at bay.
The next iteration was 100mg ER 3\day and Dilaudid 4mg for B\T....it became clear after another yr this was going to keep going up. Tolerance really blows...
SWIM made some experimental forays per his PM doc and tried the Fentanyl patches...while those worked well for the pain, they had the nasty habit of falling off frequently and its rather hard to get them back on. Too much extra tape etc..they became a logistical nightmare. The final dose before swapping to Opana was 100mcg + 75 mcg patches every 72 hours using 4mg Diluadid tabs for B\T.
Note: There is no perfect solution for pain control. Everyone is different and so are their life circumstances. But SWIM can say that find a doctor who listens and asks how you are doing rather than one who likes to tell you how your feeling. That took some time but SWIM's current doc is the best he's ever known. Doc always finds out much more than just how the pain is..ie how is seating, nausea etc..
So the final chapter (to this point anyhow) is 40mg Opana 3/daily with 120 Opana 10mg IR for B\T. Have the option to use the 50 or 75mcg Fent patches as the one big plus with those (when they stay on) is waking up was much more comfortable and took less B\T meds to get at that good place each day

All of these meds have those bad side effects..nausea (occasionally) constipation etc...but SWIM has learned to mage them well. And after some time on each med tried the side effects became less and less to a point where they didn't really both him any longer. So any med tried you need to give a few months time on it. Most will eventually level out where you can decide how well they really work.

SWIM hasn't typed this much for years

[baZING]

SWIM is honored SWIY would take the time to write that much, especially if it's been so long. That at least gives SWIM a better idea. He is at college right now and is about to go home for a long break and will be seeing a new PM doctor, but SWIM's family member knows someone who knows the doctor personally and says he's a great guy which counts for a lot. SWIM has a feeling that if he stays on Oxycontin the dose must be raised quite a bit; the problem is that the Oxy IR does nothing for him for b/t, at least at the dose he's on now. (And SWIM understands the problem SWIY has-- SWIM's Oxycontin only lasts for ~8 hrs too. He has a feeling his body reacts to opiates roughly the same way as SWIY.) SWIM has heard really good things about dialudid/hydromorphone but he definitely needs an extended release medication as well and he's not sure how well dialudid mixes with other opiates besides Fent which is synthetic (yes??) SWIM can't handle Fent and the patches drive him crazy the same way as SWIY. SWIM knows he has to ask his doctor, but out of curiosity does SWIY know if it's possible to take Opana IR for b/t with Oxycontin for long acting? SWIM thinks they are very similar medications... maybe that's the answer to his problems. Right now as mentioned SWIM is back on 40mg OC every 12 hrs (too in between doses!!) and only 10mg Oxy IR for b/t... max twice a day. That's not nearly enough. It's like taking air. He's a pretty big guy and his body really whips through those opiates fast so they wear off so soon plus he naturally needs a big dose regardless of his current tolerance. Even when he was opiate naive SWIM needed a bigger dose of oxy in his percocet than most opiate naive SWIMmers do. Once again, thanks for the insight from SWI desertimplant. It was really very helpful and he appreciates how much SWIY was able to write. It means a lot to SWIM.

[desertimplant]

Honestly it may be the right move to use something like the hydromorphone\oxymorphone for the B\T since it packs a pretty decent punch...the downside is it's relatively low bioavailability compared to Oxycodone. But 10mg Opana IR works quite well as long as SWIM puts it in an empty stomach or even under the tongue. SWIM's read a lot of posts and info where insuffalation offers ~40-50% BA compared to 10-20% if taken orally...that may be an option to knock the initial pain down. That said, then the right dose of oxycodone ER may be adequate to manage it. SWIM will say from another friend who stepped back from Fent patches to Oxycodone, he had to go to nearly double the dose...Fent seems to jack one's tolerance considerably at least for a while. But he's doing fine now on 80mg Oxy's 3\day...he uses Diluadid 4mg for his B\T...he's a double amputee so he understands pain pretty well. He said after a few days on the oxy he was able to start getting good relief again...so indeed, sounds like that may be an option to explore

[baZING]

Oh, so to the best of SWI desertimplant's knowledge, Oxymorphone can be used for B/T if Oxycontin is used for ER and it also sounds like Dialudid can be used for B/T with oxycontin for ER right? SWIM has snorted oxymorphone before; he was given some to try out (Opana 30mg ER) because the PM doctor was resistant to raising the oxycontin dose too much. SWIM thinks it's a slight case of pseudoaddiction. His pain really hasn't been treated very well yet and therefore he's said so... but it just makes him sound like an addict. While SWIM enjoys the occasional extra pill here and there, he really is in a great deal of pain. I believe SWIY said a friend had the same thing as SWIM, correct? A cyst on his tailbone? SWIY must remember how much pain he was in. It's just frustrating. Well, that last post was extremely helpful. Some doctors are much more careful with what medications they combine but that information helps a ton. SWIM will be seeing a new PM doctor when he goes home for break from school so hopefully Doc will be good. How is SWIY today?

[desertimplant]

SWIY is good....

Indeed, finding the right doc is probably the single hardest part of getting good treatment. It literally took years to locate the right one. They need to still feel empathy and not be so jaded by years of seeing pill seekers, doctor shoppers etc that they still have that human part that can understand the real need for relief. SWIM hopes SWIY has good luck on the upcoming visit.

Having something like Opana or Dilaudid for B\T shouldn't seem that unusual to any PM doc. There's not a lot of difference in being scripted 15 or 30mg oxycodone IR's along with the ER meds. That is a pretty normal path. So if getting something like OM or HM that works at 10mg or 8mg works and then allows the underlying controlled release to maintain, that's would should be requested.

[baZING]

Well as it turns out, SWIM is going to have to ask the new doc for something that isn't Oxycodone IR for B/T pain. In addition to the fact it doesn't work, SWIM is at his WIT'S END dealing with insurance and the pharmacy trying to get his script refilled. It's absolutely ridiculous and he's sick and tired of it. He doesn't think he can deal with the oxycodone anymore. Oxycontin, fine (at the right dose) but SWIM really doesn't have the emotional capacity to keep pushing and pushing insurance to deal with the Oxy IR especially if it's not working. SWIM's glad SWIY was able to give some input though. It's a huge help. SWIM feels like he's a little better armed to go into the new doc's office. He's also lucky he's very articulate, which goes a long way. Now that he knows what he's looking for there should be no real problems. How is SWIY today?

[desertimplant]

SWIM took his computer to his doc once and with a wireless internet connection showed the doc his research on various meds. Doc read through the info and then gave him what he requested. Sometimes it helps to show the doc how invested in one's own treatment they are. OK today...same same for the most part. Pain is being controlled and that is what counts

[baZING]

Glad SWIY is feeling OK today. SWIM hates to be a bother, but is there any chance SWIdesertimplant can check out the new post made by SWIM here? It should be close to the top... "Can someone help SWIM? A Withdrawal Question..." Normally SWIM wouldn't ask SWIY again, but SWIY has been an invaluable source of help so SWIM thought it wouldn't hurt to see if SWIY could look at that post, because SWIM thinks he's going crazy. :/