Pain daily since January 1975...tough as nails

Hi there...Welcome to the boards..

Sorry to hear about your situation. A few suggestions....

One is to talk with your Dr. about this issue and try and work it out where you can get to have about a weeks worth of meds on hand to take if you end up running out just because the Pharmacy doesn't have the meds you need in stock.

As well as trying to find a Pharmacy where you can actually meet and talk with the head Pharmacist about your issue and you can both look at the records and see when the shipments come in and whether they can make sure they order enough to cover your needs each month.

Are you all in FL barred by law to have partial prescriptions? In my state, the Pharmacists is allowed to fill them partially but I do lose the rest of the prescription if it doesn't come in before 72 hours so I have to drive to the Dr. to pick up an actual new prescription for the rest. Thankfully this has only happened twice in about 12 years for me.

I have gotten to really know my Pharmacist and they know what medical issues I have and because they value my business and know that I am a straight up pain patient who has never had any issues, they make sure that their orders each month will cover my meds.

Anyway, just a few thoughts...but your best bet is having enough on hand for these situations where you are taking them exactly as prescribed but then having trouble getting it filled with stock issues.

Hello Priscilla and welcome to HW!

I also live in FL around the Daytona area and it's a statewide issue not just Miami! Although I've had some similar issues and an ER Dr had to write percocet per my PM on a holiday weekend back in May when Walgreens decided to make filling any scheduled II meds a during office hours of the Dr only. Even though I've filled the same Med at the same Walgreens for 10 years by only 2 different Drs.

I have a friend whom was on the very controversial Roxy 30's and was going a week sometimes without meds because they couldn't get them, she was changed to dilaudid and now the same thing. The pharmacy told her that all the people that were on Roxy we're switched to dilaudid causing the very same issues. Now she's on fentenyl and so far no problems.

Im on methadone and not had a problem getting them. The pharmacys wont fill for you here if you don't use the one closest to you and the problem with that is many wont carry scheduled II meds due to risk of robbery and hassle getting them. I live within 4 miles of 2 Walgreens that don't stock any class II meds leaving me to go 12 miles to one that does.

It's a 24 hr pharmacy but can only fill M-Thurs 9-5 my Drs not in on Fri. Had to call him and pick up a partial script for 10 pills to fill once when I was going to be due on a date when Thursday was a holiday, Fri he was out Saturday I needed to fill and couldn't til Monday. He doesn't want me to use Walgreens but after filling with them 10 years no one else is going to.

All I can say is your best bet is switch meds. Some of the others are not so controversial but diluadid like the Roxy is high on the IV drug users list of choices.

It's sad we have to even have such issues.

Hey Priscilla.1st welcome to HW. Really sorry to hear about the powers that be dropping the ball with regards to your pain medicine.Sounds like you're holding up your end of the bargain as a patient.

Withdrawals are terrible.I would imagine at some time everyone here has experienced withdrawal to some extent.

I was under the impression that a couple of years ago Pain Meds were easier to get in FLA.Did they pass some laws that have ended up screwing legitimate Patients?

Good day and God Bless,
Rick

Sounds like all the crap I go through every month. When you get the correct amount for a several months it should be clear sailing. I take the same meds just so I don't have to jump through hoops anymore. When he asked if I wanted to try something else, I quickly say NO.

Google your questions and make sure you specify laws and regulations pertaining to Florida because we're the only one's that have some of these outlandish rules

Thanks so much Lexiray! My doctor is great, almost always listens to me; and is also creative in coming up with solutions for me.

I understand about bioavailability. Yes, hydromorphone is not even close to other meds in its bioavailability. There are a couple of reasons it works well for me- one, can't get OxyContin here anymore. My docs (it is a husband and wife team; how cool is that?) switched all their patients off of it when the war on prescription drugs caught fire in Florida. Two, hydromorphone seems to be a bit more effective for neuropathic pain, for which I also take Amitryptaline (neuron tin never worked for me--thank heavens the Amitryptaline does work)

The neuropathic pain component is soooo severe; I keep a six month supply 'just in case' (of apocalypse). Once the neuropathic pain starts to wind up, there is nothing I can do to affect it...no position or postural change, ice, heat ultrasound therapies have no effect...it is quite bizzare really. This pain, once it starts winding up, will run away. I do not yet know where it can end...once I endured eleven days without treatment (injections or meds) through circumstances, as in this case, that were beyond my control. I remember weeping, sobbing like a puddle of protoplasm, helpless to help myself. I can remember crying in every room in my house, and it takes a hell of a lot to bring me to tears .

Anyone who has neuropathic pain I am sure can relate, and if you don't have this type of pain, then believe me, you never want to know what it is.

It is my fear of this runaway pain-train that has made me so desperate to get my meds filled! It becomes unbearable pretty quickly, and with no hope of relief coming soon, I honestly don't know how I could endure yet another episode.

I have too many pain generators throuty spine to be a legit candidate for a spinal cord stimulator, and my docotor is THE master of multiple lead placement. It just can't be considered a success if you cover 8 out 11 pain sources. The goal is to be able to cover enough pain so as not to have to depend ones anymore.

One of my problems is that I was injured very young. My bones were still growing. This influenced the bone remodeling of the spine fractures.
And now that I am 55 years old, the degenerative changes have had almost 40 years to take place.

Back to the med questions; my tolerance seems to be pretty up there. A few weeks ago, when I first couldn't fill my script, the doc wrote me for Percocet 10/325's. I needed 12 per day to cover the back pain and to function normally, however, even at 120mg oxycodone per day, the neuropathic pain cranked up and I was unable to slow it or bring it down with the Percocet. Obviously, I was at the upper limit for acetominophen at close to 4 g/day.

I sometimes wish I could try the fentanyl lollipops for this situation. But there is no zero chance of getting them.

Other options? Morphine? Really not a good drug for me...it gets 'dirty' after a few months..anyone know what I mean? The vivid morphine nightmares are amazing, but way too Intensly negative and disturbing. There are other effects that are unpleasant.

I have tried a lot of things multiple times (I tried gabapentin five times, titrating slowly up to 3600mg / day, and no help) I tried fentanyl patches three or four times...and when a drug makes you crazy four times, it will probable it will make you crazy a Fifth time.

Opana was very smooth as I recall, but I never could get past the nausea. Also very expensive.

Ideally, I would have OxyContin as my base med, and Dilaudid for breakthrough, but for the war on Prescription drugs, it cannot be done.

I hope I don't come off being negative and unwilling to try something new. I'm just really steamed and very scared and not a little disgusted.

Lexie most places here and I imagine Miami is one of them you have a better chance of winning the lottery then getting oxy IR of any kind. This is the drug that put us on this path here.

Its so frustrating to be told you can't have this, or use this, or your Dr prescribes it only to find out no pharmacy carries it nor will they order it.

By the way I use methadone Miracle as its the least difficult to get up here in DB.

I think that by the very nature of our being on medications that are hard to get, that we have to worry about every 30 days, that we run risks of running out, refusal, withdrawals,....it can make almost any of us come across as desperate drug seekers. Let's face it, just like a diabetic who runs out of insulin, someone with angina who doesn't have nitro tabs, how about running out of antidepressants that we're instructed are dangerous to "abruptly d/c?" Anyone on any medication that affects their quality of life and ability to function can appear "desperate" in frustration because we know what that means.

To any of us who have not had problems, and can relax knowing we'll get our meds when needed, know the difference it makes in MAINTAINING our quality of life.

"Pain" is so misunderstood so its treatment is perceived as "elective" if we're prescribed narcotics, but so long as we're taking NSAIDS that rip our stomach apart,...we're okay. If we're getting short term treatment because we needed six spinal surgeries, it's acceptable, but "maintaining quality of life" seems so foreign and acquiring our meds so difficult, I can't help but wonder how many of us are flagged as drug seekers because of the meds we're on, or because of one doctor or one pharmacist and their misunderstanding, misperception, or their personal agenda of OUR health care.


Sookie

Priscilla try to avoid the Talwin as it's not a good Med for CPers who need their b/t meds to work at full capacity. The antagonist mechanism in it cuts far too much into its abilities to be of much use.

As for the methadone and patient losses? You can pretty much bet every Dr has lost a patient on one opiate or another. Too many variables, not taking as ordered, not checking drug /food interaction, mixing meds with alcohol, or other meds or just taking more. Especially with methadone! Because of that godsend half life folks don't "feel " it working. No instant narcotics nausea, no head buzz, no euphoria, so they take another and when it all catches up your in deep respitory distress. Also some think new Med, strange symptoms, is it the way I'm supposed to feel? Too many too late ignore allergic reactions to meds and we see them here inquiring and you will see us "old-timers posting "go to er " call your Dr ".

Methadone is a Med that is Not intended for persons who are not on the high scale of opiate tolerant. Never prescribed or used as a rescue Med. It is a complex and highly misunderstood Med but great for some people.

I've found it to be one of the most available Med here in FL as well as the other 2 states I've resided in while being a CPer. Possibly because its use in addiction? Every Dr treating addiction in pregnant women has to treat with methadone, pregnant mom's have to have that availability and not go even a day without the meds or risk early labor, distress to unborn child or they simply return to drug of choice endangering their child.

Same for addicts, Med doesn't work if they can't get it. As usual addicts have one up on us. They can get their meds when we often can't! This is one time that I will ride their coat tails and benefit from their being acknowledged as a necessary legitimate need and CPers get the "oh we can get it for you by next week " deal! .

As for are we flagged, or labeled? Sorry forgot who said that, I'm sure many of us are and most states are requiring pharmacys to alert the powers that be of patients whom have excessive scripts of scheduled II meds filled or people in the higher doses, and using meds off label. The monitoring systems many states have provide authority when above average amounts are in use. Thus many pharmacys now requiring diagnosis codes to be included for class I & II meds.

Yes unfortunately it's going to be up there in cost. More then I draw on Ssdi a month!

You might check to see if they have a patient assistance program if you haven't already.

I hate finding something that works only to find out it's outta my reach! One of the reasons I ended up on methadone, dirt cheap. about .25 cents a pill?

Lexie I have Medicare as well and had some of the same issues, finally enrolled in a Medicare advantage plan and the state not only picked up the premium for my Medicare but pay for my Humana gold and I have no co-pay since I'm medical needy too!

Just to say look into it since your also in FL. They don't advertise that these options are open to you. They are if your on SSdi, have little or no resources. That's me!!

Sookie, I know its hard to swallow, but if you're gonna do the disability thing, the sooner you can get the paperwork in the better, cause best case, it will take 3 or 4 months...but in lots of cases it can take upwards of a year to actually get benefits when its all said and done, sometimes longer.

My other half rarely even gets the sniffles. It drives me CRAZY. He broke his foot, and cut the cast off himself after a week because he couldn't work with it on...and somehow that worked out for him just fine...me? I can trip over the floor and be done in for weeks.

Vickie, are you Medi/Medi? I have Medicare as my primary, with humana preferred for my drug coverage, and then based on my low income and being medically needy I have Medicaid, and Medicaid is the one that pays my premiums and provides the "extra care"

I'm thanking my lucky stars that Medicare became my primary a few years ago, because from what I understand, Medicaid doesn't like covering narcotics anymore.