Help! Looking for a new pain medication.

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Girly Girl
Regular Member


Date Joined Apr 2012
Total Posts : 46
   Posted 6/20/2012 10:01 AM (GMT -6)   
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.

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/20/2012 10:28 AM (GMT -6)   
Hi there...

I'm sorry to hear of your troubles...

If I could ask a few questions...

May I ask who is prescribing the Lortab/Vicodin (couldn't tell which one you take)....?

I would make another appt. with this Dr. as they seem to be comfortable with prescribing an opiate for you and just explain to them that it's not working any more to help with your pain.

When taking the Lortab/Vicodin....what level does your pain get down to after taking them on a scale from 1-10...

The Dr. you are seeing now may decide to prescribe a few more a day but have you space them out every 4 hours (having a maximum amount for the day). Or if they see this as a chronic condition, they may move you up to Percocets (Oxycodone immediate release) or even a low dose of an extended release medication.

There are not that many Drs. who prescribe Demoral anymore..(at least in the US)....And if you are looking to get pain relief for your wound...then I don't think seeing a headache specialist is the place to go.

Do they say if this wound will heal or not in the future?
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 932
   Posted 6/20/2012 10:32 AM (GMT -6)   
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.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds:20mg Oxycontin daily, Oxycodone 5-10mg for BT. .25-.5mg xanax as needed for sleep, Verapamil 240mg SR (for tachycardia).

Girly Girl
Regular Member


Date Joined Apr 2012
Total Posts : 46
   Posted 6/21/2012 9:52 AM (GMT -6)   
Snowbunny, and Cogito,

Thanks for the replies. When I said I had never taken any pain medication for all my other medical problems, I meant up until now, when my wound and skin disease happened. For the past 11 years I had never taken anything until now.

I am taking Vicodin and my pain level only drops to maybe a 6 or 7 after I take it. I would say that when it is so intolerable that i need pain medication my pain level is a 9. I have been told this is a chronic wound and chronic disease. I am sorry I wasn't clear, my family member who recieves Demoral receives this prescription from a primary care physican.

Congito, you bring up a very good point that I didn't think of; that the liver metablozes Hydrocodone, so I wonder if I am possibly not metalbozing it correctly or have been taking it too long. I am surprised that not any of the doctors I have seen have recongnized this or pointed it out, they all know of my other conditions.

I am not familiar with pain management specialists; what exactly do they do, is it just like seeing a doctor? Sorry, if that is a crazy question, I just don't know anything about any of this.

I called to schedule an appointment with my primary and I am going to ask them about all of this.

Another question that I have that got mumbled together in my post is- Is the amount of medication I am taking a crazy amount? And is this normal---my primary doctor who is writing the prescriptions only gives me a 2-3 week supply of pain meds at one time. Whenever I see her she says that she understands my condition and it is not a problem to do refills, but I am calling and then having to go pick up prescriptions every 3 weeks. The clinic where she is located is small, but it takes her a week to get the refill written.....so there have been times when I have no pain medication. Over Memorial Day weekend this happened, a week prior I had called the clinic to get the refill, but it was never written. I was very clear about running out of pain meds. The only reason I had a pain medication to take was because my brother had leftover pain medicine from his wisdom teeth being pulled. I asked my dr. about this when I saw her again and she said they were busy and she didn't get to it!!!

Thanks for the help!
Primary Sclerosing Cholangitis- September 1999
Ulcerative Colitis- December 2000
Pyoderma Gangrenosum- October 2011

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/21/2012 10:23 AM (GMT -6)   
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)


cats
Regular Member


Date Joined Jun 2012
Total Posts : 28
   Posted 6/21/2012 1:13 PM (GMT -6)   
A pain specialist is usually a physician that has a degree in anesthesia. Most hospitals have pain management clinics now. It would be to your benefit to go to one . With the crackdown on physicians subscribing narcotics that aren't needed puts the patient who really needs them in a bind. Physicians have become wary and I understand why. Doesn't make it easier for us though that depend on a narcotic for a " normal" life. This new rule that you can't get a prescription refilled until a certain date( not one day earlier) makes it inconvenient for a lot of people. Maybe if you took your meds on a regular schedule, not waiting until the pain is unbearable, it would help. By waiting, the pain med has that much more to do. You could be getting used to it and its not working like it should. I do think a pain clinic is your answer. Good luck.
today is yesterdays tomorrow.

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/21/2012 4:25 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 wink
Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."

Post Edited (Screaming Eagle) : 6/21/2012 3:50:18 PM (GMT-6)


Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/21/2012 4:56 PM (GMT -6)   
SE...If I can explain a bit more...

I wasn't meaning that PM's aren't under scrutiny from the state and DEA....They are as well..

But what is happening is all 50 states over the next few years are moving towards having more strict guidelines for who prescribe opiates.

So, unless a Primary Care Physician, Internist, Rheumatologist, etc...(non Pain Mgmt Drs.)....get the extra training and certifications needed....they will no longer be able to prescribe opiates beyond a short period of time.

Most PM's, the one's who use medication as part of their program, already have years of training either through Anesthesiology or actual Pain Management Specialities. As well as they go each year to conferences and get more training/updating of their speciality.

So...that is why I keep mentioning this. It wasn't to say that PM's aren't being watched...Everyone is. It's just about the new laws going into effect.

That is why many PCPs or other non PM's are sending their patients elsewhere....or are stopping prescribing opiates as they don't want to take the time to do the extra training/certifications required to continue.

So I hope I cleared that part up when you see me mention this:) (I'll also try to be more clear when I state this in other posts)....
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/21/2012 5:23 PM (GMT -6)   
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
Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."

Post Edited (Screaming Eagle) : 6/21/2012 4:29:19 PM (GMT-6)


Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/21/2012 5:25 PM (GMT -6)   
Opps..I'm so sorry! I had just typed about this on another post as well so I was assuming it was me...DORKY me:)...LOL

Carry on...pretend I wasn't here.....haha
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/21/2012 5:27 PM (GMT -6)   
Hey!…I think I can do that! devil tongue

Your buddy! SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."

Ryobi
Regular Member


Date Joined Apr 2012
Total Posts : 114
   Posted 6/21/2012 11:01 PM (GMT -6)   
I have the butran patch, it is extremely helpful, and will not make you feel silly or out of it as some of the pain meds can. Also it is in a class where you can have 5 refills at a time. You change the patch once a week. I have had good luck with it, I know some on this board have not but its worth asking about if you do not want to have to go in to get your refills all the time, this would give you six months worth. It is used to treat long term chronic pain so I am not sure if they would give it to you, but 7 months does seem like a while. Good luck! Hope you feel better
Mindy
Diagnosed Fibromyalgia 2010
Diagnosed Rheumatoid Arthritis 2011
Diagnosed Hypothyroidism 2012
Medications
Butrans 20 mg patch
Hydrocodone 10 mg BT pain
Ambien as needed
Valium as needed
Treximet as needed
Naproxen as needed
Arava

Girly Girl
Regular Member


Date Joined Apr 2012
Total Posts : 46
   Posted 6/22/2012 9:33 AM (GMT -6)   
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.
Primary Sclerosing Cholangitis- September 1999
Ulcerative Colitis- December 2000
Pyoderma Gangrenosum- October 2011

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16779
   Posted 6/22/2012 9:47 AM (GMT -6)   
Hi GirlyGirl, I don't know how much you have kept up with all the things going on concerning pain mgt and medications, but there are new rules and guidelines in place and drs are really changing the way they practice in many offices. Its nothing personal towards you at all, although it feels that way at times. The war on drugs has managed to ruin things for chronic pain patients in many ways. I have no problem with them going after the abusers and such, but I do have a problem when it can affect my level of care as a chronic pain patient.

I hope things work out for you with the new dr. Take care....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/22/2012 10:16 AM (GMT -6)   
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!...
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

Girly Girl
Regular Member


Date Joined Apr 2012
Total Posts : 46
   Posted 6/23/2012 6:17 AM (GMT -6)   
Susie, Snowbunny, and Kate,

Thanks for your comments they were really helpful. I am clueless when it comes to rules about pain medication and all the guidelines, so I am really glad I posted on here because you have informed me of some important things.

Snowbunny- you mentioned you can't have 2 active prescriptions from different doctors, does this mean that even if I get a different medication on Monday I can't get it filled until my other one is done? Even if I am going to quit taking the Hydrocodone, hoping this new medication works better? I will surrender my leftover Hydro's to have something that works!!!

Thanks for the other medication ideas, I have already written them down to ask this doctor about.

Thanks again for the posts and I am sorry that you guys have to go through and deal with this kinda stuff all the time; I can't imagine how frusterating it must be at times.

A.
Primary Sclerosing Cholangitis- September 1999
Ulcerative Colitis- December 2000
Pyoderma Gangrenosum- October 2011

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/23/2012 8:39 AM (GMT -6)   
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:)
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/25/2012 12:33 AM (GMT -6)   
I understand your honesty too, in what you said about taking another person's med, but the legal advice given here on this subject is very sound, and very serious. If the other drugs showed up in a blood test, and the doctor(s) knew you weren't legally prescribed, if at the least, it would make it difficult, if not possible, to ever get legitimate pain meds again. Not telling you what to do, as you have to do what you feel is best for you in your circumstances, but I would cease and desist that in the future, as you don't want to make things ultimately worse on yourself.

While there is a crackdown of sorts going across the country, I have noticed in responses here and at other CP sources, it really varies from region to region, state to state. Here in S.C., if you have the right kind of doctor, in my case, a very good oncologist, getting the meds I need and have been prescribed, is never a problem. The few times my local CVS gave me a hard time, the doctor got right on the phone and set their minds right. Haven't had any problems since.

As far as what meds work best, that varies so very much from person to person. After being on Loratabs for over 2 years, the doctor tried to switch me to Dilauid, but I found that it was very ineffective for the type of cancer pain I have, so he had no problem switching me back. He also tried me on one of the "oxy" meds, but again, it didn't do as much for the pain.

Either seeing a good pain specialist, or having a regular doctor who is also a pain specialist, as is my doctor, is a good way to build a long term relationship to dealing with CP. Depends what kind of options and resources you have on hand, i.e. insurance, etc.

I wish you well, and hope you can find the right combination of doctors and meds to help you long term.

David in SC
Age: 59, 56 dx, PSA: 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/10 .04, 8/10 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0, 4/12 37.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

Girly Girl
Regular Member


Date Joined Apr 2012
Total Posts : 46
   Posted 6/26/2012 5:52 AM (GMT -6)   
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.
Primary Sclerosing Cholangitis- September 1999
Ulcerative Colitis- December 2000
Pyoderma Gangrenosum- October 2011

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 687
   Posted 6/27/2012 4:30 PM (GMT -6)   
i think hydromorphone and oxymorphone at the right dose are some of the most effective for big pain, fentanyl gets the job done also. adding potentating medication can help, ex. soma, vistaril, clonazepam, ect.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: MScontin 100mg q8hrs. , dilaudid 8mg q6hrs. prn, oxymorphone IR 10mg q6 ,vistaril 50mg prn nausea, Lyrica 150mg 2x,Adderall 20mgs 1x A.M. 10mg PM prn, Soma 350 mg 3X, Elavil 25 HS, diazepam 10mg bid prn, Supplements: CO-Q10 100mg, Vitamin D 1000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, ALA

Luie
Regular Member


Date Joined Jun 2012
Total Posts : 175
   Posted 6/29/2012 7:35 PM (GMT -6)   
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

mattolsen
Regular Member


Date Joined Jan 2012
Total Posts : 24
   Posted 7/5/2012 12:42 PM (GMT -6)   
A few things have seemingly helped me with talking to my doctors about things like this.


-keep a detailed pain journal
-include how your medication helps in the journal
-describe how your pain affects your life
-describe your goals with your medication
-don't ask for anything in particular, just tell them how it feels and how the medication makes you feel
-if what you're taking isn't working well ask them what your options are

I have a great GP but I'd went through tons to find him. So if you find that your GP isn't addressing your concerns then find a new one or ask for a referral to a pain management doctor.

I was on norco in the beginning and my GP isn't trained well in pain medicine so, even though he meant well, he wasn't getting the job done. He was afraid of getting me hooked on painkillers. I told him that I felt that having to take the norco every 3-4 hours was reinforcing the need for a pill more than an extended release might. I started on norco at 2 10/325 every 4-6 and since then have tried everything from morphine to percocet. I'm now on oxycontin and dilaudid for breakthrough. For me, it's a combination that is working well. Though, I also have suggested opiate rotation to my GP so I don't develop a tolerance to these medications. Just something to look into. Good luck

flagrl
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/5/2012 2:28 PM (GMT -6)   

      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!

 


Long term member of the Chronic Pain Club. I suffer with severe spinal stenosis at L4 and L5, inoperable nerve damage of ganglion impar, right side sciatica in hip and leg, lumbar facet arthropathy, and degenerative disk disease. Intrathecal morphine pump implanted in 2005.

Equestrianne12
Regular Member


Date Joined Dec 2011
Total Posts : 63
   Posted 7/7/2012 10:28 AM (GMT -6)   
I have UC/crohns/colitis to be exact but I have no liver involvement like you do. I am actually very surprised they prescribed any pain meds for you with liver involvment at all. I take norco (hydrocodone) 10/325 12pills a day for the severe rectal pain and fun joint problems that go with the uc. I am very sorry you are hurting I know the pain an it is a living nightmare. I know it can be like pulling teeth to get someone to take you seriously. the problem is with your liver darn near every pain med is digested there and especially the acetaminiphin I know I spelled that wrong but I am hurting like crazy this morning so I am not even going to spell check it, well anyways that is awful for your liver. you would be better off going ahead and taking oxycodone instead but ofcourse not all meds work the same on others. I would say fin a doctor that isn't dismissive about your pain. most decent gi's know the amount of pain from just the side effects alone of ibd so just find the right doctor for you, describe to them your frustrations and your goals and see what happens. Good luck I hope you are pain free or at least pain manageable soon
trigeminal neuralgia, crohn's/colitis, Ankylosing spondylitis
Promethazine, Sulfasalazine, tetracycline,
Sucralfate, Valium, Norco, coconut oil, vitamins!, vitamin e enema, pentasa enema
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