Need Opinions & Recommendations On Pain Management Options Please!

[BlackWarGreymon]

Good Morning,

I will begin with explaining my situation. I have an acquired advanced airway disease which resulted from prolonged intubation immediately after birth. After 110 surgeries I am fortunate to be alive still. I had a few surgeries around say the last 3 which really were not helpful and the doctor worked in areas in the upper airway and epiglottic region. Now I have more issues than I had previously and am in more pain than I was years before. I have since been told that further surgery on my airway is likely not to benefit someone such as myself and seeing how more harm has come than good I feel its best to not have any for as long as possible. The nature of this disease though is over time months to a few years my airway will grow more polyps and grow shut slowly resulting in more energy needed to breath and further pain especially since half of my airway is just collapsed and I got no structure really left that looks anything like a normal airway. I was told various options but the two main ones would be to have a trachea inserted which is not an option for me and won't get rid of the pain I have due to the failed upper airway and missing half my epiglottis function resulting in dysphagia and more tissue inflammation and scar tissue pain. The other option is to mess with my voice which I don't use my vocal cords because one is paralyzed and the other is buried in scar tissue! I can talk with a deep raspy voice because since birth my body has adapted. Had I been older it would not be so.

So basically further surgery for me is a no go. So they told me I would have to make lifestyle choices. They never said what those were and I can only guess as to what they meant. Anyhow now with this issue I been seeing a Pulmonologist with an internal med degree rather than an ENT doctor who would only do surgery anyhow.. I seen the best in the USA and don't care to let just any wise crack doctor try a stab at me, no way! Of course the Pulmonologist cannot treat my disease surgically so I see him because he is willing to treat me symptoms at least long term. Thing is the government says if your in pain chronically long term to see a pain management specialist. I been on Norco 10/325 120 for months then I went to Percocet 10/325 120 for three months but switched back because the Percocet cause me to have a stimulating effect and I found I had to take more after 2.5 weeks and the effect was not lasting as long. So my tolerance was going up faster than with Norco and I felt many times I took Percocet it did not work. So I just decide to stay on the Norco for now. I have tried Tramadol which I thought was ineffective period. I think my body lacks the enzyme to metabolise it to the M1 Metabolite or whatever.. My doctor has cut my dose of Norco to 90 then to 60. So now I asked for an addition medication to supplement with it. I currently also take Celebrex 200mg twice a day sometimes I take 400 twice a day and take breaks from it too. As with my Norco I sometimes take more than two a day as I really find taking it three times a day is best so that means I would run short 7 - 8 days early before my next refill. My doctor knows that but he is a bit of an ass too.

He tells me I don't need to go to a ENT and that seeing a Pain Management Doctor is up to me but he does not recommend it.. He tells me I am seeing the best doctor right here.. yeah I get a hint of self inflated worth. I take a few other medications for my GERD and even with insurance it all cost me a lot. So I mentioned that even prior to me not having insurance for like a year so self paying to see a doctor and pay out of pocket with rx coupons still cost me a lot. He tells me if I have trouble paying for my medications to sell my Norco on the street 2 - 3 tabs would be enough for me to pay for my meds. I was like um.. yeah whatever... That struck me as "I don't give a fuck" attitude and he thinks too big of himself. I will not nor never sell my medications I mean I never used any illegal drugs ever! The only advantage I have so far with this doctor is he always gives me my refills and he rarely does urine tests which is fine when he does I always make sure I have my medication in my system the day I go in just in case but still he is rarely doing urine tests and the last one I paid for was 100 dollars without insurance so yeah I really was against such things its costly... not to mention makes me feel like I am being interrogated...

I went to a Pain Management Doctor at the place I work, ironically because everyone said oh he is so good.. yeah I was not feeling well and debated even putting my health and personal things with my work.. kind of a no go but I decided to go in for one visit. I was given a script for the same pain meds and dose my previous doctor had me on and he made me sign some dumb contract before seeing him which I really laughed at seeing how I knew he smoked pot all the time himself and admits it yet he told me seeing him he would treat me like a drug addict and do genetic testing for addiction potential and all this bull... and so I was like yeah sure try to scare me whatever... So he basically took a stance and said he would do a spinal modulator for my pain maybe but I was like no that would cost a lot and the injections he asked me about I was like look there is no injection you can do to treat an airway disorder as advanced as mine so don't even sell me that bs... I was also told he was asking why I was coming to him for painkillers and that a few docs just got shut down in the area due to the recently DEA crackdown and so he was saying he is trying to fly under the radar and prescribe less and less to not draw attention for a visit. So basically I took my script and left and after 31 days I told him I was not returning and went back to see my main prescribing doctor!

The pain I have is getting to me and being able to take 3 Norco a day along with the Celebrex is better than taking just two but my doctor won't give me more than what he has me at now.. So sure I am going to push this time for 90 tablets and see how it goes because I will be seeing his new P.A. while he is out of office so maybe I will get lucky. But who knows.. Even so yeah I will admit I do often times in extreme pain take 30 - 40 mg of Norco at once but not as not a daily or weekly thing. My doctor tells me I can take 20mg at once max but not to do it often... but I question then why he won't give me anything stronger.. well its probably due to the recent crackdown and the fear...

So basically I am looking into this new pain management clinic and am going to get a referral and try it out. Maybe they will do more for me but having to sign a contract and such gots me a bit annoyed but if that is what it takes whatever... I been researching newer opiates anyhow and the newest one Nucynta is very expensive and I hear in higher dosage it can make one seeing things.. not something I want... Norco is a tried and proven opioid which always has worked for the most part. I did look into a longer acting drug that is cheaper like Levorphanol but I don't see my regular doctor doing that or even giving me Dilaudid. So I have to see a Pain Management Doctor for those most likely. Another drug I would like to take and have taken in the past was Dexamethasone (Decadron) and at high doses the effects on inflammation and pain are great but the side effects long term are very extreme and so I am not sure if its an option to take on a semi weekly basis or as needed because the side effects and risk of further health problems with steroids is extreme! I did ask my doctor for low dose Dexamethasone he probably would have given me some but my fear of side effects convinced him and myself to hold off but still Decadron was given to me by my past ENT for my issues along with Opioids so I know its a treatment regimen for my case. Oh I should mention that inhalers of steroid or other class for COPD or other Asthma related disorders do not work for my disease because its a fixed condition.

So basically I want to know if anyone has any suggestions and maybe can throw out some other medications for me to ask about or whatever. I mean has anyone taken Levorphanol at all and can tell me how effective it is? I have taken Hydromorphone 6 mg long ago after a surgery and I remember they kill pain well but the effect only last for 3.5 hours. Norco for me last at least 5 hours. Well any suggestion would be welcome!

 

[Keif' Richards]

It sounds like duration of effect is a bigger issue than a higher dosage. If you feel that you need a third dose per day instead of the current two, then I think you should try to stick to that route. There's no need to escalate if you don't have to in order to control your pain. I'm guessing you're in Europe, because we don't have Levorphanol here in the United States, so I'm not as familiar with European practice compared to American.

Oxycodone (Percocet, others) would be the logical next step up, but you'ce indicated that it doesn't really work for you. Tramadol and Codeine are both pretty much out of the question as you've already got tolerance. Dilaudid (Hydromorphone) would probably be the next step you would take. Have you ever tried Morphine for your pain?

 

[BlackWarGreymon]

No I live in the United States, Florida to be exact. Well I think Dilaudid would be the next step then because having taken it in the past after a surgery I know its effect profile is nearly identical to Hydrocodone seeing how 5-6 percent of Hydrocodone is converted to Hydromorphone via the liver. I have never taken oral Morphine for chronic pain long term (only after a surgery) but would like to give it a try but seeing how the research I have done on it equating to bio availability, it would seem the only added affect would be a longer duration of action perhaps besides more sedation due to it being a stronger agonist at the Mu receptor than Hydrocodone being only 6/10ths as strong. When I looked up Hydromorphone it seems it has no active metabolite and rather crosses the blood brain barrier and works somewhere on the range of 4 - 8 times the power of Morphine with 5 being the accepted degree from sources like Wikipedia. But having taken Hydromorphone I would say its a powerful drug and if it truly is 4 or 8 times that of oral Morphine then I don't see what Morphine can offer me. I will say though its so ironic how the stronger immediate acting Opioids like Morphine, Hydromorphone are cheaper than Oxycodone or even Hydrocodone...

Back to the subject though I did not know Levorphanol was not in the United States.. The cost of taking something like Zohydro or Hysingla ER or Oxycotin is too expensive insurance wise and well I am not sure how effective a 12 or 24 hour med would really be but I cannot knock it till I try it but due to cost its out of the question... especially the new ER hydrocodone formula's. Probably because a generic is not available that is why. I just think I am going to have to try and find a new pain management place and this one I found looks good but I won't know till I go how things will turn out. I just know I don't want something too strong because with my breathing I have had a point with like 40 mg Hydrocodone where it has made me have labored breathing that is noticeable.. While I have never felt sick on any Opioid period I will say too high of a dose really makes me have trouble focusing and with working for a doctor and such I cannot be losing my mind at work or I would be out of a job...

I really though think with Opioids the whole future on them is looking ruff. You know that Pain Management Doctor I work with believes the CDC and DEA will ban all Opioids soon.. I feel that is not going to happen though because what would we use? The newer drugs based on snake venom and poison from deep sea fish and such are still highly experimental...

So yeah like you said duration of action is probably what I need and well while Hydromorphone may be stronger, its duration of action is less than that of Hydrocodone. Well perhaps when I go to this new Pain Management Clinic I will have more options and maybe I can finally find something with a longer duration maybe Morphine. One thing I know that is true is while one can read up on all these options its not until you take these medications that you will know how they really work.. I do know that my current doctor will never give me anything stronger than Percocet period. When I first went to him long ago and was established in the writing it said do not ask for Opioids that require a triplicate script like Dilaudid... but I don't believe it requires one nowdays... So who knows but I feel he is getting a bit useless to me and I feel more so while he does care I also can see I am a paycheck to him as well! He refuses to write me for a 90 day supply rather he will make me come in each time.. Even if I asked him for Codeine with APAP so it would be Tylenol 4, he would probably not give me refills on a Schedule 3... Ah well what can you do!

 

[maggells]

Morphine would probably be the best choice. MS Contin 15mg every 12hours would give you approximately the same daily amount as the hydrocodone but spread slowly over 12hrs. If you don't want around the clock the immediate release tablets 15mg every 4 hours for pain or shortness of breath would be my recommendation. Morphine does not have the stimulating effect of oxycodone and does not tend to build tolerance as fast either. It also is very beneficial for dyspnea (trouble breathing) which will become more pronounced as your condition progresses. The price is far more reasonable as well. Celebrex tends to be very expensive. Does it help you? Dexamethasone can be given in tapering burst doses for flare ups but does not work well just as needed. You most likely will eventually need it daily but until then a short taper could help until you're pain is better controlled. Hydrocodone is almost ALWAYS prescribed at least every 6 hours as needed as it does not last longer than that. Only allowing 2 doses a day for someone with your condition is insane. And telling you to sell your hydrocodone is beyond wrong. Hopefully you will find a more understanding doctor! Best of luck.

 

[BlackWarGreymon]

Yes Celebrex is expensive, but nowhere near the price of Dexilant for my acid reflux disease which I am lucky to get it for 26 dollars with my insurance coverage and manufacture savings card but that will expire at the end of next month then it will be an 80 dollar copay which sucks. The Celebrex even generic cost me 40 dollars a month. Does it help me though? Well I think it has a stronger effect than taking 4 of the sodium based advil tablets and when combined with the Norco I think it works better than Advil and Norco. I think Dexamethasone would help me much more and is cheaper for sure! I would have to work out some kind of regimen to make the side effects more tolerable. As for Morphine I will definitely be talking to my new pain management doctor about it and see what they say. Maybe using Morphine ER for pain daily with Hydrocodone or Hydromorphone for breakthrough pain only when needed, would be something to do. I just am one who does not think one drug is a fix all especially an Opioid and when I have to start asking all these questions to the doctor I am seeing now its like gosh when the patient has to take over and recommend a pain management plan because the doctor thinks Norco is the cure, well its frustrating. So yeah I definitely am going to find a new PMD and hope for something better because having to stretch what I got which is little as it is and such..

 

[deos68]

cannabis is good for pain in oil form that you sub under the tongue

 

[BlackWarGreymon]

My current doctor's former P.A. asked me about trying Marinol (Tetrahydrocannabinol) but told me no insurance company would cover it at the time. I thought about it but refused it because well I was not convinced it would be as strong as a Morphine based drug. I am going to do some research on it and see how it compares in trials to morphine and morphine based drugs. Still its a kind of stigma I have too about Cannabis in that I have never tried it because well its illegal and I don't smoke its not good for my health condition for sure.. I think right now its still hard for me to justify its use as the government still see's it as an illicit substance while having a script for it makes it legal yes, still I hate to be called a pot head if it worked, you know... But then again I guess it can't be worse than being called a pill addict or morphine addict because your on morphine based pain killers daily...