Help! Looking for a new pain medication.

Hi everyone,

I am in need of suggestions about a new pain medication.  I was diagnosed with Pyoderma Gangrenousm, which is a autoimmune skin disease, in October.  Basically it is an open wound now that still has 4-7 months of healing time to go.  The disease started out as ulcers on my leg/ankle/foot area, then it turns into the open wound.  From what I have read there are many suffers of chronic wounds who have to deal with pain daily.  I am not sure if anyone hear is in the same boat? 

What I am looking for answers to is that I need a new pain medication.  Like many of you have stated on this board my doctors acted like I should not be asking for pain meds or make me feel guilty for taking them.  Every time I was getting my pain med. refilled it was like pulling teeth.  Every doctor says someone else should prescribe them, like they don't want to be responsible for prescribing it.  The dermatalogist I see says I should see my primary, my primary thinks it should be prescribed by the treating doctor, sometimes I hear that I don't need to be on it as much.  I think this tends to be a common problem with people who have chronic wounds, I have read a lot of information about this recently.    I now see that I need pain medication for this and should be able to get it.  Every day with Pyoderma Gangrenousm is different, some are good, and some are bad.  I think that I should be able to take something for pain that works and helps cut the pain. 

I also have PSC, a liver disease, and Ulcerative Colitis.  I have never taken pain medication for anything and I have encountered some serious pain with procedures that have been done.  The only time I have ever taken pain meds was when I actually was hospitalized.  I have told my doctors this.  Every time I go to the doctors I have a list of questions and am always asking questions; I think it is obvious I am not abusing my pain med. in any way.  I have grown tolerant of it though and need something different. 

I am currently taking Hydro/APAP- 7.5/325.  Most of the time I take 2 at a time.  Because my supply is limited I usually only take 2 or 3 pills a day.  2 for sure after I have to shower, clean, and re-dress the wound.  I tried Tramadol before that and it didn't go too well.  I had terrible headaches and felt awful after taking it for most of the day.  I am not familiar with pain meds and I would like to be able to talk to my primary doctor more about this.  I actually am thinking of seeing a new doctor who one of my family members see's, and that doctor prescribes Demerol (not sure of the spelling) for headaches and minor aches and pains.  I am dealing with a chronic wound shouldn't I be able to find a med. that helps my pain?  The Hydo/APAP never really helped my pain, but it was the only med. that I could get a prescription for so I just dealt with it.  On days when my pain level is low, I feel better and I think that helps with healing because I do more, and just all around feel better. 

Any suggestions are highly appreciated!!

A.

Hi Girly Girl,

Welcome to the chronic pain board. I don't mean to challenge you, but others will be confused as you write: "I have never taken pain medication for anything and I have encountered some serious pain with procedures that have been done." But then you write "I am currently taking Hydro/APAP- 7.5/325. "

Regarding your condition and the pain that it causes, I wonder if there are specific meds that help more for it?

Regarding the tramadol, I was on it for years and it helped me, but some people are more sensitive to it, sometimes because of the serotonin increase it causes.

PSC and Colitis will also be issues for your prescriber. I'm surprised that you're using hydrocodone as it is a pro-drug that the liver has to metabolize -- so I assume it is more demanding on the liver than other opioids. I think that is something to ask your doctor about. It also sounds like you need a pain management (PM) specialist -- many if not most of the members of this board see one. Some PM's primary treat with injections and other non-opioid modalities, others focus on medications. It sounds like the latter is what you need -- you can ask one of your current docs, perhaps the one who prescribes the hydrocodone, for a referral.

Thanks for explaining more...

I really have to caution you that taking your brother's pain medication is illegal. It's actually a Felony for both him to allow this and for you to take it.

I know you are hurting, and trying to get the situation worked out with your pain medication....but you really should not be doing this as it can actually get you kicked out of your Drs. office and then have a black mark on your medical records for life...(not to mention the legal ramifications).....

If your PCP called you in right now for a drug test, and you have told her that you are out of pain meds...you would test positive for opiates. So..I'm just saying all this because I would hate to see you ruin your chance at getting proper pain mgmt.

This is why you need to make an appt. with your PCP and talk with her about this being a chronic pain condition, if she can refer you to a Pain Management Dr. Most PCPs are getting away from prescribing opiates on a long term basis.

A Pain Mgmt. Dr. will look over all your records and discuss your pain mgmt. needs and figure out the best modalities to help treat your pain.

If you need to go to an Urgent Care Clinic until you can see your PCP again...then first call your PCP, get an appt. coming up, and let them know that you are in severe pain and need to see someone now to get help until your appt.

Again...I am not trying to scold...just making you aware of things...

I do wish you well..

Post Edited (Snowbunny21) : 6/21/2012 3:48:48 PM (GMT-6)

Hello Girly!

There are two types of Pain Management clinics,…one only offers injections, ...and the other offers both injections and pain med's. If you are in need of pain med's for your management, then seek the later.

One other thing I keep seeing here on the forum, is that members are saying that PCD's are the ones under fire from the DEA. I don't really agree with this, as we constantly see PM clinics being raided in the news. This has forced many PCD's to take over pain management of their patients. I believe that both the PCD's and the PM's are under fire, but that the PM's have made the new's more often,…some of them dubbed as Pill mills.

In our city, a PM was convicted of killing 33 of his patients, and the PM's are under the gun here big time! This is the main reason my PCD has taken over my pain management, and said I would be better off with him for that reason. Does he have the same expertise? NO!…I don't think so, ….but the PM's are holding back on scripting certain med's,…basically "Oxycontin", and it's very difficult to get scripted with it.

Good luck and let us know how your appointment goes on your next visit with your PCD.

SE

Snowbunny…my comments have nothing to do with your post here…but with Cats…and I see this posted quite a bit. I suppose it is different in other parts of the country, but is not that way here. We simply see PCD's taking on more and more of PM's jobs of pain management. Cats area may be different than mine too! Just wanted to point out that this is not the norm for all parts of the country.

SE

Hey!…I think I can do that!

Your buddy! SE

Thanks for all the comments.

I am aware of the legal aspects of using someone elses prescriptions, on anything. I was not sure if I should have said all that in my post, but it was the truth and I wanted honest answers to my questions.

I just got off the phone with my primary, seeing about my prescription being refilled because it is up next week. I had been getting the same amount of pain meds. with the same dosing for the past 3 months. It was every 3 weeks. The receptionist just now informed me that I could not pick up the presciption until next Friday, when Monday is exactly 3 weeks. I could hear my doctor talking in the background, but she would not get on the phone with me presonally. I cannot refill my medication if it is too soon, my insurance wouldn't pay, and the pharmacy wouldn't fill it. I tried to explain to the receptionist that I wouldn't be able to get a refill it if it was too soon, obviously, but I wanted to pick the actual prescription up earlier becaues it is sometimes hard for me to get out and drive. This doesn't matter. I am so frusterated because I am not doing anything wrong, but they are acting like I am abusing this small dose of pain meds. When I see my doctor face to face she says "oh yes, everything is fine, she knows I am not refilling or abusing this, and I should take it whenever I'm in pain, she understands" but then she can't even talk to me on the phone?????

My mom has a neurological condition and she see's a different doctor, as her primary I just called them and got an appointment for Monday--so hopefully I get all this figured out. My mom really likes this doctor, she said their organized and she never has a problem getting an appointment or anything she needs. The clinic that this doctor is at is 20 minutes away. The PM at the hospital where I go is 1 1/2 hours away so this is the quickest appointment I can get. My dermatologist is at the hospital as well, so it's a drive to get there.

I am 25 years old so I know I understand why a physican would be hesitant prescribing pain medication to me. I live in a small town, 2000 people. My primary has known who I was since I was a baby. I never saw her as a doctor until a few years ago, but she knew me and knew of my other medical problems. Her own daughter was a year ahead of me in school. I am a college senior, I was suppose to graduate this spring, but wasn't able to complete the last fall or spring semester because of my wound. If all these places are hesitant about prescribing anyone any type of pain medicine, wouldn't they look into your background and doesn't that count for something? I am sorry I am venting in this post also.

I appreciate all your help--
A.

Thanks for sharing more...And again..I really was not trying to scold you as I really appreciate your honesty about taking your brother's medication. I just wanted to warn you and make you aware of how much trouble it could get you in as I'm sure you don't want that to happen...

Another quick suggestion but this other Dr. (your mom's), you need to make sure they know that you are getting opiates from the Dr. you see now. Because if they prescribe you opiates without knowing...and then your PM Dr. finds out....again...it could cause great trouble as it would be considered "Dr. shopping".....

Now...getting opinions from other Drs. is absolutely a good thing to do...and you may even decide to move your entire care over to this new Dr....That is not Dr. shopping....

It's just not allowed to get two "active" prescriptions from two different Drs..

That is what is so good about these boards because there are all sorts of people on the pain journey...And those of us who have been in chronic pain for many, many years....can help those like you, who are new to all of this.

So we just want to help make sure you get the best possible care in the right way...

Keep us posted on everything!...

I'm just saying that you need to let the new Dr. know that you are seeing another Dr. and have a prescription that is for Hydros that is ready to picked up by Friday...

If you decide with the new Dr. that you are going to only see them and they are going to prescribe an opiate for you....then ask the Dr. to contact your old Dr. and say to cancel that prescription so that you are cleared from having two opiate prescriptions at the same time.

The key is making sure BOTH Drs. know about one another.

And just FYI...but the Duragesic patches that Kate mentioned have the medication Fentanyl in them. That is THE strongest narcotic there is...So...I would absolutely not ask this new Dr. about this medication....or any for that matter....Having only been on Hydrocodone....it's extremely unlikely any Dr. would move to you this medication.

The purpose of seeing a Dr. that you trust is to tell them about your pain. What you can and can't do because of it. What type of pain it is...etc. And then let the Dr. decide on what type of medication you should take. Obviously you can tell what you have taken before.....but a patient should really never request or ask for a specific narcotic..

And yes...it's a bit more complicated with more strict laws/guidelines with dealing with opiates....But it's really about having a good Dr. who works with you. And just making sure on your end you follow the prescription exactly as it's written...

With your new Dr...if they prescribe an opiate..I would make sure you go over the directions very carefully with him/her to see what the maximum amount you are allowed to take per day. And how long the prescription should last. As I mentioned earilier....most prescriptions are meant to last for 30 days....

Feel free to ask more questions....Obviously none of us are Drs....and just giving our thoughts/suggestions based on our journey with chronic pain...

Hope you can enjoy your weekend:)

Hey guys--

First I want to clear up some confusion the medication I took that was my brothers's was the exact same medication that I was taking. I appreciate everyone informing me on the problems that could have arisen from taking someone else's prescription. I am from Missouri and this is not the "crackdown" that we have...we are one of the highest Meth states. You dont ever hear about anything with presciption medication, but I am not ever going to take my chances. Being honest about everything is important for healing, getting and stay well and pain free, and you can not achieve that by lying to your doctor about anything pain related.

I had my appointment and this doctor thought Oxycodone 15 mg. twice a day was the thing to try. I liked this doctor; he was a straight to the point type. He looked at my PG/wound, said he hadn't seen this in many years, said he thought it could be quite painful, asked my why I was coming to him, and how much pain medication I was taking and why it wasn't working. I told him I definetly need a dose after I shower, undress, and redress my wound and I had been needing it in the afternoon the past few weeks also.

I just got done redressing it and took a dose right before typing this so hopefully it will help. My leg that the wound is on was very swollen today, so that just made it drain and hurt more than usual. The temperature where I live was 101 yesterday too. My wound is located on my leg/ankle/foot so being on it can make it swell. I drove to the clinic by myself; it is 20 mins. away and then went and got a few groceries so I was on it a lot. I am 25, but my mom usually goes with me to all my appointments because my dermatologist is 1 1/2 away and if they do anything to it I obviously can't drive home. And as she says she can't let her kids go anywhere alone like this no matter how old they are.

I do have a question for the experts!! I didnt' realize until I got home that this medication didn't have tynolol in it...I assumed it did because the dr. said not to take any tylonol while I was taking this. Is this normal for this medication? How strong is this medicine and this dose compared to everything else? It hasn't knocked me out yet, which is good because I like to stay awake if possible.

When I had a porticath put in when I was 15 I was given Tylonol with Codeine and it make me throw up. The conclusion was that I was allergic to it. I tried taking it about 3 times, with or without food, and had the same results. The doctors told me to just take Tylonol since I was allergic to codeine. Are oxycodone and codeine in the same family? What is the difference between the two?

Also what do any of you take as a good over the counter pain medication? I try to just take 500 mg. of Tylonol when I do, which doesn't help, but I don't want to take 1000 mg. because of my liver. Ibuprofen is out of the question. I tried taking it when I first got PG/wound and it killed my stomach which is common with people who have IBD. Any suggestions?

I know I have asked a million questions in this one post--I appreciate all the feedback.
A.

And this doctor knows what was going on with the other so there is no confusion about anything, but like I posted before its the same hospital just different locations; so everything is in their computer also.

you need to be on an extended release pain med like oxycontin or morphine er and oxycodone 10s with some valuim 10s or somthing for break thru , need to lay off the tylenol pills (vicodin ,percocet,tramadol) does so much damage to your liver,

goodluck

      I'm really sorry to hear about all you are going through.  I do agree with Cogito in that surely there are some meds that are designed specifically for this particular disease or ailment.  That said, when it comes to pain medications, it would be useless for me to tell you what pain medication to ask for.  Pain meds are like shoes, they don't come in one size fits all.  You need to find the one that works best for you and no one else can tell you what that will be.   I have been suffering from chronic pain for one-third of my lifetime, so I've been around the block a few times when it comes to doctors and pain meds.  You will encounter doctors of 3 different types-- some are very anti-narcotic meds and will try to use just about any other medication rather than give you a narcotic for pain.  Others are more willing to listen and prescribe the appropriate med that will help, but this is a trial and error operation and it may take several tries to find the right doctor and the best medication that works for you.  And, of course, there are the doctors that hand out narcotics as if they were candy.  Stay away from them.  More harm than good there. 

During the early years of my problems, I couldn't find anyone who would really listen to what I was going through and they all wanted to go their own direction, but not really listening to my signals about what was going on with me and my body.  I changed doctors many times.  You don't want a doctor who doesn't listen to you but you want a doctor who is willing to listen to you and work with you to solve your problems.  If the doctor you are seeing right now is not willing to try other things to get you some relief, then it's time to find another doctor.  You may have to try more than one, more than two, but don't give up.  Like I said, after suffering for so many years, I finally stumbled on the doctor who got it right and now, even though I'm not pain free and will never be back to "normal" again, I at least can get trough the day now without wanting to shoot myself. 

I don't know if this has been helpful or not, but I don't think going to a doctor who prescribes Demerol for headaches is the answer, just because you can get a different medication from him.  Do some research, talk to people, get online.  Like I said, it isn't easy but you can find the right one.  Good luck!