No problem…everyone gets to share their experience!
rosen said:
Elle- forgive me if I implied that I think pain meds are inappropriate for all. I was just sharing my experience.
Can you please refer me to the specific studies that made you come to the conclusion that opioids are not compatible “with our family of diseases.”? I can’t find anything on the website you referred me to. If you can give me the title of the paper(s), I’m sure I can find the info. Also, I’m not sure what you mean by, “there won’t be any studies”. Without studies, all you have is a hypothesis, and that’s not something that practice should be guided by. Thanks so much for your help. I’m really interested in learning more about this, I just can’t seem to get my hands on the info. It’s very interesting, though, so I’d like to learn about it.
tntlamb said:
Your electronic scripting will take effect in Oct. this year. You will have to have a documented office call every 30 days, The total amount of controlled substances for self administration prescribed by PCP’s , including sub-specialties (rheumatology is a subspecialty) will be limited. (In most states that’s somewhere around 120 mg morphine equivalents/year) That doesn’t mean you won’t be able to get pain meds, you just won’t be able to get them from your Rheumie. You may have an easier time getting Tramadol in other states as it isn’t a federal Diversion Drug for a year or so. Years ago I took a number of pain meds until i found out how incompatible they are with our family of diseases - the hard way (no it wasn’t addiction, it was increasing and/or intractable pain. My pain rehab was about two years. The research is pretty clear that the action of these meds on the nocicepton, sigma and toll-like 4 receptors among others creates allodynia and hyperalgesia for just about everyone using them over time. Should there be any underlying nerve pain which is increased by them, true migraine, which is exacerbated or Fibro which is amplified, one is really screwed. I doubt there are any of us who haven’t needed a hand from time to time, but honestly like the others here throwing a couple of tramadol at it is sorta like putting out a forest fire with a tea cup.
Thats probably why the overwhelming majority of rheumies will not prescribe them and if they are unable to manage the disease well enough to preclude the need refer to pain specialists.( Incidendtaly this happens less than 5% - 10% of all patients in a normal rheumatology practice)
I have no dog in the fight. If someone wants use heroin, that should be their right. By the same token a physician who is doing right by his patients by doing his best to keep the patient from worsening their condition with medications that will assuredly do so should not be labeled compassionate or not compassionate.
BTW if you wait for bad LFTs from tylenol you are in deep doo if you get them. More arthritis patients are fouled up and/or killed by NSAIDs and tylenol than any part of the disease.
There are very specific conditions for studies. If you plowed through the all 66 pages of the first position paper I listed you should have a pretty clear idea of why short acting and immediate release pain medications are inappropriate and are now strongly regulated in terms of how many morphine equivalent units can be allowed per year. There likley isn't an ER in the country anymore that will intervene in a chronic pain situation (ie non-emergent care) they will help if a leg is cut off, kidney stones, a change in circumstances leading to a new diagnoses ("slipped disc")You may need a Pain Management referral. Within a very few months pain meds will be electronically tracked in every state you will be limited to 120mg morphine (it will vary some by state, Montana will be about 160) units/year of short acting/immediate release pain meds without a pain management intervention or qualifying diagnoses. Arthritis (by itself) is NOT a qualifying diagnoses. It will be a purely evidence based process. Interestingly the US is one of the few countries where this is even a question.
Long acting pain medications which are generally ONLY available through Pain management will be a different ball game. Understand that credentialing for pain management is dramatically changing. The pill mills are or soon will be gone.
I am well aware of what qualifies as a good research study, and why some are poor, since I have read many and have written one. The study you referred me to has nothing to do with PsA in particular, and that’s what I’m interested in. I’m not interested in when or why pain medications will or won’t be available, or how people will or won’t be able to get them. I’m not interested in regulation of pain meds. I AM interested in why you believe opioids are not appropriate for PsA IN PARTICULAR. If they are truly NOT appropriate, there will be at least a handful of good studies proving that. I haven’t been able to find anything regarding that particular issue, however.
tntlamb said:
There are very specific conditions for studies. If you plowed through the all 66 pages of the first position paper I listed you should have a pretty clear idea of why short acting and immediate release pain medications are inappropriate and are now strongly regulated in terms of how many morphine equivalent units can be allowed per year. There likley isn’t an ER in the country anymore that will intervene in a chronic pain situation (ie non-emergent care) they will help if a leg is cut off, kidney stones, a change in circumstances leading to a new diagnoses (“slipped disc”)You may need a Pain Management referral. Within a very few months pain meds will be electronically tracked in every state you will be limited to 120mg morphine (it will vary some by state, Montana will be about 160) units/year of short acting/immediate release pain meds without a pain management intervention or qualifying diagnoses. Arthritis (by itself) is NOT a qualifying diagnoses. It will be a purely evidence based process. Interestingly the US is one of the few countries where this is even a question.
Long acting pain medications which are generally ONLY available through Pain management will be a different ball game. Understand that credentialing for pain management is dramatically changing. The pill mills are or soon will be gone.
http://onlinelibrary.wiley.com/doi/10.1002/art.21435/full
A good review of pain management for rheumatic disease. It's a bit less technical, but still helpful.
Yes, Rosen, nice article and I think we need it in our “library”. Would you mind posting it under DISCUSSION – scroll down to PsA Articles and Research?
Elle, you get an AMEN from me! But I do see it as only one way of tackling pain, as others have mentioned. But here’s another angle. Staying physically active is an important part of staying well with this disease, and if pain prevents you from moving, it all becomes a vicious circle. So sometimes we need to take some judicious pain relief to prevent the need to take more pain relief.
I know there are rheumatologists who, as a rule, will not supply opiod pain meds. Usually the reason for this is perfectly logical: if your pain is that bad that you need heavy pain meds, your disease isn’t well-enough controlled. So disease control is the goal, it’s not a case of wanting to see patients in pain.
In the months when I was waiting for a hip replacement, I took tramadol and tylenol arthritis 'round the clock, on a schedule. It got me through to my surgery, and without the pain meds, Clearly, taking pain drugs isn’t ideal, but it’s better than jumping off the bridge.
I think that it’s such a shame that there is a stigma attached to taking pain medication, even when you have a condition like PsA. I find it odd that in the US it’s easier to get a gun than it is to get pain meds. (Ooops, have I put a cat amongst the pigeons? 
Actually the US is the easiest place to get them Canada has much stricter rules. In fact these Canadian guidlines are part of the model we are using. The issue is long term use for certain types of chronic pain. In many ways patients are getting better pain management than ever. Few physicians have the training and expertise to manage chronic pain. Just as we wouldn't let a GP perform surgery, we would not allow most physicians to manage pain.
To clarify, AGAIN, this post is NOT about the benefits vs risks of using pain meds in PsA. I keep informed of research regarding treatment options for rheumatic diseases in general, and have done a lot of reading about opioids specifically. This discussion has been hijacked, which I find disappointing. Because of the direction this discussion has been skewed, I won’t be able to reach the people I was trying to connect with. And that’s really too bad.
There were 116 unique visitors to this thread (about average.) as with any forum 60%+ are lurkers and don't post. In addition to yourself one would expect 3 other posters to agree with the concept of using opiate/opiod as a regular/continuous therapy for non-specifc chronic "pain" (pain which does not have an identifiable organic cause) One would expect 1 or 2 "amens" posted to affirm the concept. Or in short one 2 people you were trying to reach. You got that. The others believe that these pain medications are for short term use for acute situations. No one passed judgement on anyone, but they certainly have developed their own ideas over their year with the disease
There was a discussion which developed a life of its own thats why discussions happen and learning occurs. Involved in that discussion were two physicians with PsA, one PhD researcher (in rheumatic diseases) and one medical writer. I am reasonably certain they have all have read extensively and researched their disease. You may not have heard what you were wanting to hear but but no means was the thread derailed or hijacked.
there will be many more to come. this topic appears regularly here and across the network, it is a favorite for new members. most are quite surprised to find how few use pain meds regularly.
SEENIE! Control yourself! We do not discuss anything about that word in the US!
Seenie said:
Yes, Rosen, nice article and I think we need it in our “library”. Would you mind posting it under DISCUSSION – scroll down to PsA Articles and Research?
Elle, you get an AMEN from me! But I do see it as only one way of tackling pain, as others have mentioned. But here’s another angle. Staying physically active is an important part of staying well with this disease, and if pain prevents you from moving, it all becomes a vicious circle. So sometimes we need to take some judicious pain relief to prevent the need to take more pain relief.
I know there are rheumatologists who, as a rule, will not supply opiod pain meds. Usually the reason for this is perfectly logical: if your pain is that bad that you need heavy pain meds, your disease isn’t well-enough controlled. So disease control is the goal, it’s not a case of wanting to see patients in pain.
In the months when I was waiting for a hip replacement, I took tramadol and tylenol arthritis 'round the clock, on a schedule. It got me through to my surgery, and without the pain meds, Clearly, taking pain drugs isn’t ideal, but it’s better than jumping off the bridge.
I think that it’s such a shame that there is a stigma attached to taking pain medication, even when you have a condition like PsA. I find it odd that in the US it’s easier to get a gun than it is to get pain meds. (Ooops, have I put a cat amongst the pigeons?
Seenie said:
Yes, Rosen, nice article and I think we need it in our "library". Would you mind posting it under DISCUSSION -- scroll down to PsA Articles and Research?
Elle, you get an AMEN from me! But I do see it as only one way of tackling pain, as others have mentioned. But here's another angle. Staying physically active is an important part of staying well with this disease, and if pain prevents you from moving, it all becomes a vicious circle. So sometimes we need to take some judicious pain relief to prevent the need to take more pain relief.
I know there are rheumatologists who, as a rule, will not supply opiod pain meds. Usually the reason for this is perfectly logical: if your pain is that bad that you need heavy pain meds, your disease isn't well-enough controlled. So disease control is the goal, it's not a case of wanting to see patients in pain.
In the months when I was waiting for a hip replacement, I took tramadol and tylenol arthritis 'round the clock, on a schedule. It got me through to my surgery, and without the pain meds, Clearly, taking pain drugs isn't ideal, but it's better than jumping off the bridge.
I think that it's such a shame that there is a stigma attached to taking pain medication, even when you have a condition like PsA. I find it odd that in the US it's easier to get a gun than it is to get pain meds. (Ooops, have I put a cat amongst the pigeons? ;-)
Yep. It’s difficult to get a pain specialist to prescribe pain medication, but you can smoke weed in Colorado. Know I do not endorse doing such.
You asked for it, so here it is:
I was diagnosed with PsA in November 2012 after dealing with tender, swollen joints since May of that year. I believe my trigger was the loss of my dear friend to breast Ca. In the time between May and November, I was treated with steroids and NSAIDs and the occasional run of percocet. In January, I was finally able to start Remicade, but I still had a lot of pain. My GP referred me to pain management who put me on a long acting opioid, a break-though opioid and an NSAID. I went through several NSAIDs before finding that plain old ibuprofen suited me best. Even with the new drugs, I STILL hurt. Don't get me wrong, they helped a great deal, but I still had pain. Enough that I was unsure that I would be able to go back to work. Anyway, after 12 weeks of leave, I finally made up my mind that I just had to go back no matter what, so I went. The pain continued, and I think that it was 8/10 before drugs and maybe made it to a 5-6/10 after drugs.
I just recently started Lyrica and now, finally, with the combination of all of these meds, there are days when my pain is below a 5/10. I feel like I am finally getting my life back.
The thought of having to go back to PM is horrifying, as I have gotten horrible treatment and been over-medicated in the past. I am hopeful that my GP will still be able to Rx my drugs as she has been doing for the last year. She is following the program written out by my PM doc. If I must go back to PM, then I will definitely be hunting for a new doctor for certain.
All of that said, I still feel like there is something else going on in my body. The level of pain that I have does not seem to be typical of well managed PsA, even with the addition of the secondary fibro dx. I have always felt that there is more here than meets the eye, but have pretty much given up with the doctor route. I am sick and tired of appointments, and I am functioning now, which is all I really want. I want to live my life and not give anything up. That is where I am now. I have said before, and will say again, you can pry my drugs out of my cold dead hands. Even the ibuprofen. What I have now is a delicate balance and I will fight to keep my quality of life.
You know, Elle, this place is sometimes a bit like a cocktail party. Someone starts a conversation, others pipe in and perhaps go off on a tangent, and before you know you’re talking about interesting things which are related, but perhaps not what the original poster had in mind. It happens, and it keeps things interesting around here. It’s not really hijacking, because nobody is deliberately taking the thread over for their own purposes.
But you’re not happy with the direction that your thread seems to have gone. At this point, would you like to clarify what you’d hoped that this thread would accomplish, or would you like to begin again and start another?
Elle said:
To clarify, AGAIN, this post is NOT about the benefits vs risks of using pain meds in PsA. I keep informed of research regarding treatment options for rheumatic diseases in general, and have done a lot of reading about opioids specifically. This discussion has been hijacked, which I find disappointing. Because of the direction this discussion has been skewed, I won’t be able to reach the people I was trying to connect with. And that’s really too bad.
Elle - I hear what you're saying, I do think this thread has reached those you seem to be interested in reaching, even if it has veered a bit from what was originally posted. You'll find this happens a lot, just like in any organic discussion. It doesn't help that many of us have short-term memory issues or brain fog and our train of thought tends to derail quite often! Please have patience with us!
I think there are some of us who do depend on daily scheduled pain meds, as well as those of us (me!) who dream of being able to find relief through daily scheduled pain meds (among other things, like diet, exercise, etc.). I think the difference is knowing what the potential implications of using daily pain meds can be on your body, specific to the medications you are taking and your own physical make-up - as well as finding the proper, healthy balance. And, I suppose, ,knowing if your doctor is prescribing pain meds just to give you want you say you want, or is prescribing pain meds to support you until your treatment is fully in effect or to provide relief for pain caused by existing damage or an additional medical condition.
For me, tramadol takes the edge off, but nothing more, and I know over time it will not work at all. I take it before bed, which helps take the edge off so I can get comfortable enough to sleep. I'd take pain meds on a schedule if I could find something that worked for me and didn't damage my liver, but only because I have pain even when my PsA is under control, due to damage done by the disease (PsA / AS), and, my doctors suspect, some other cause we have yet to identify.
Hi Elle! I am new here, just got PsA dx in March of this year. I was seeing Pain Management prior to this due to a back injury in 2009. I take Percocet (5/325) as needed in addition to Neurontin, Mirapex, Effexor (for Fibro), Plaquenil, Prednisone and several allergy medicines on a daily basis. When I meet and was diagnosed my current Rheumatologist (#2) she only added what she felt was needed to my meds. She feels that part of Pain Managements job is to monitor how and when I am using my pain meds. I have tried many other NSAIDs over the last 5 years and unfortunately they have not worked well for me, I even tried a topical compound with no luck. The one thing I have found helpful is my portable TENS unit for SI and low back pain during the day when I don't want to take any narcotics. I totally understand where you are coming from about other peoples perceptions regarding narcotic usage. I just continue on doing what I feel allows me to be as active as I can with as little pain as possible and try to do a really good job at ignoring the opinions of people who are ignorant to how it feels to live with chronic pain :)
I just want to say thanks to all of you who have shared your stories on this thread...I really appreciate it! I have had PsA for a very long time, about 15 years, so there is no doubt a bit of damage done and I also have osteoarthritis (of course!) so the pain challenge is real. So yeah, I guess I'm with you, GrumpyCat...they can pry my pain meds out of my cold dead hands!!! God bless, all.
I take lots of meds including Enbrel....I also take time released narcotics as well as narcotics for breakthrough pain. I can't stand the pain, it is unbearable at times. I take what I need so that I can continue to work. I can't believe how much PsA hurts. My rheumatologist recommended the pain may doc that I go to. Thank goodness I found him!
Wow, that was a bit of thread necro. Now the cycle will continue…
What is necro?