Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and muscles... The symptoms that distinguish rheumatoid arthritis from other forms of arthritis are inflammation and soft-tissue swelling of many joints at the same time (polyarthritis). The joints are usually affected initially asymmetrically and then in a symmetrical fashion as the disease progresses. The pain generally improves with use of the affected joints, and there is...

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Do you take narcotic pain meds?

For your RA? And if so, for what specifically?

This might seem like a strange question, but I am just dumbfounded.

A few years ago, I had a shoulder impingement. It was BAD. And having 3 little ones and no ability to get surgery (though I did have the cortisone shots) the orthopod I saw put me on hydrocodone and meloxicam (ibuprofen/nsaid). 5mg hydrocodone was not enough so he pushed it up to 7.5mg. The impingement gradually got better on its own and he moved me back to 5mg (4x per day as needed).

Long story short, I have essentially been taking narcotic pain relievers since 2007, minus the time I was pregnant with my daughter.

In a day and age where this is such a taboo topic, I feel a little skeevy even talking about it..... but I know that's because of the people out there who have abused these medications and the stigma these meds now carry.

Anyway, the thing with the narcotic pain relievers: THEY HELP ME!! I do not get "high" off them, I don't get dizzy/sleepy (except for maybe the first day of taking them?) They are effective for me and they work. They help me get around without feeling achy. Even though I no longer have the shoulder impingement... the "RA" makes me achy ALL THE TIME. I used to think it was fibromyalgia, but regardless, for me, these drugs WORK. They help me tremendously.

Since I no longer had a shoulder impingement, I was referred to a pain management doctor in my orthopod's practice. She has tried everything from lyrica to electrical shock/stimulation. Almost ALL of what she wants me to try freaks me out or I can't do it for one reason or another (for instance NSAIDS, apart from otc ibuprofen, don't mix well with me). This electrical stimulation... NO. I'm sorry, NO. I feel that THOSE methods are far less conservative than pain meds. But, because I live in a state where pill mills and addiction to these drugs is an epidemic, I think its caused doctors to shy away from these meds. And this doctor is like, anti-pain meds (mind you, she is pain management!!) She currently has me on a prescription of hydrocodone 5mg, up to TWICE per day. That's it. I told her it helps me more to take it 3-4 times per day. She refuses. I'd like to switch doctors, but then I worry I'd be seen as "doctor shopping?"

My rheumatologist said (at my last appointment) that she would have no problem prescribing them, but for whatever reason, FL is now not allowing her (or rheumys in general?) to prescribe narcotics??

Anyway... I guess this is a "question/vent/advice needed" ramble instead of just a flat out question. Sorry about that. Anyway, do you take pain meds for your rheum? And is it for a specific area or is it for the achiness in general?

Replies

deleted_user
deleted_user

I personally do not take narcotics for my RA, but I have been fortunate enough not to need them. Yet. I say yet because I recognize that even though my pain is well controlled with a combination of MTX, Humira, and Celebrex, I understand that there could (and probably will) come a time when I need something else to keep things under control. At that time I will do whatever I need to do (including taking narcotics) to improve my quality of life.

This is a touchy topic - you're right about that. So many rotten apples have spoiled it for the rest of us by abusing pain meds. Doctors have been made very suspicious of anyone who appears to be "doctor shopping" and really, who can blame them? It's very easy to become jaded in a field where people malinger or outright lie to get pills. It's a very sad situation for everyone involved.

I know I didn't really answer your question. I hope you are able to get the pain relief you need. Quality of life is key. I hope your doctor is able to see that, and if not, that you can find one who can.
ncgranny62
ncgranny62

I have them on hand just in case I do really need them and on a rare occasion when I have tried other things first and gotten no relief, I will take one then (actually, I cut them in half--if half doesn't work, then later I will take the other half). I try Naproxen, alternate heat and cold therapy, meditation, rest. Fortunately, I have been able to control my pain most of the time this way. My doctors have all told me that it is all right to take them when I need to, but I put off taking anything that strong.

I think it is an individual decision. Only you know how much pain your body can endure.
bcatz
bcatz

I don't take narcotics - pain relief is absolutely needed, but with RA the best medication are DMARDS...I assume you are on your share of RA med too.
I guess if I had to use a narcotic, I would. I hope you feel better.
aggie83
aggie83

Are you not taking any RA meds? RA meds should be taking care of some of the pain (the joint swelling IS so painful). I would think you would want a dmard or biologic to prevent future joint erosion and deformity.

On the hydtocodone, I take when needed. In the past year I have taken it about five times, when my shoulders (me, too!) would not work. But the Plaq and Mtx seem to be preventing the pain/swelling.
deleted_user
deleted_user

I was on hydrocodone/apap 5/500 1x every 6hr and recently switched to nucynta ER 100mg (12 hr). I can usually get by with 1 nucynta a day, but I'm also dealing with daily migraines.. probably due to a bad RA neck and sinus infection. I've taken 1 dose of MTX and got sick, hopefully will start it up here again in the next few days so I can reduce or eliminate the narcotic use.

It's hard to imagine in FL they're not letting RA patients take much narcotics... especially considering the damage it can do. That's crazy, it really lowers the quality of life for a lot of pain patients in a state known for it's older population. Did your rheumy tell you that or...? I'd call another rheumy office, tell them your situation and ask them flat out.

I don't know what else to tell you. I've been very straight forward with my doctors about narcotic use. I switched doctors when I started suspecting RA because I didn't trust my current office with something serious. My new doc didn't like it, but he prescribed until I could get into rheumy, who was not a bit hesitant to prescribe and even encouraged me to go on something stronger until the MTX does it job. Currently I'm on a prednisone burst, which helps a lot. I hope you find relief soon!!
deleted_user
deleted_user

I too take the vicodin. No other pain meds have helped and my new biologic hasn't started to work yet. My rheumy at first didn't like the fact that I needed them but then when he was assured I wasn't abusing them he was much more comfprtable. I try not to take them but on a bad day I I take 2 and usually thats all I need for the day.
deleted_user
deleted_user

Narcotics make me so SICK, but Tramadol does help me. I take four to six Tramadol a day, and have for a year, slong with 400 mg of Celebrex, Humira and MTX. Tramadol also seems to help with my fatigue.
deleted_user
deleted_user

I am not sure that the issue with narcotic pain meds is about a few people who "choose" to abuse them. The reluctance in some doctors prescribing, likely has to do with the real risk that your body/brain will become physiologically dependent on them. I would never say never to taking these meds, but appreciate that doctors prescribe these meds with caution. Narcotic meds are risky in dealing with chronic pain.
deleted_user
deleted_user

I take vicodin. When I started out it was one pill every 6 hours when needed. I cut this back my self. When the RA meds work, I don't need to take any. But I'm down to almost no meds left and on Enbrel which is working about 1/3 of what it use to. Now I need the Vicodin a lot of the time. I take one half a pill every 4 hours as needed. It works best for me when I'm in awful pain to not have the jolt the first hour and nothing the last 3 hours as it wears off. It sort of works like a pain released pill this way.

I have been on the pain patch at times but it is a dangerous drug and if you aren't careful where you wear it, you can get an overdose. It releases by the heat of your body so for me the best place is the top of my shoulder where I wouldn't be sitting against anything and producing extra heat.

I do watch that I take the Vicodin with milk because it can be hard on your tummy. My RA doc has no problem writing the script for me. Without killing the pain I wouldn't have a life, be productive or enjoy living.

Now here is the REAL touchy topic...POT...and yes, I have grown it , dryed it and smoked it. It works as good as Vicodin without side effects! So there, I said it. Not only that, smoke 1/2 a joint and it holds you all night...what a shame to exclude this from people who could benefit because of addicts selling and buying it on the streets.
deleted_user
deleted_user

I live in Florida and my first Rheumy gave my hydrocodone 7.5mg and it was causing me some reactions so my PCP gave me Morphine and said I could take up to 20mg every day. It is a 24 hr time released dosage and it has worked for me when I am bad. I dont take it often like I did before my meds started working, but I am alos now taking Cymbalta and that really does help me with the everyday pains and aches I have from the RA and the damage it has done. Only when I am in a bad flare will I take the Morphine too.
Angelpuss
Angelpuss

Like ncgranny, I have them on hand should I be in such pain that nothing else works. my Rheumatologist prescribes them but one packet may last me for months. For general achiness I don't take it.

You haven't mentioned any RA meds but I'm presuming your Rheumy has you on a treatment program for RA.
deleted_user
deleted_user

I don't take pain meds for RA, because they do not control the disease, just cover up the pain. Pain is the warning sign of the body. My advice is to get on the meds the doc has given you, and don't be afraid to ask for more. If you have severe RA, the damage will be much greater than if you went on the right meds as soon as possible.

I spent 3 years being undiagnosed and then another 5 on low meds, and I had to have my foot reconstructed it was so deformed. I just wish I had been given the biologics sooner, as they gave me my life back.
deleted_user
deleted_user

I agree with Holee. For all the research I have done, pot seems like the best choice for me. The risks are all but non-existant, and the research solid. I am not there yet, but living on Vancouver Island it is even a socially acceptable choice.
Caren28
Caren28

I also take narcotic pain meds- right now it's hydrocodone 7.5, one or two pills at a time. I limit myself to two doses per day, but the bottle says I can take it every six hours. My rheumy prescribes them and has no problem doing so. I'm also on MTX, plaquenil and Orencia. I think the Orencia is starting to work, because I am having more days where I can get away with one dose per day. I have non-RA pain issues as well, and take Lyrica for that. I live in a state that has medical marijuana laws, and I do occasionally smoke pot, mostly to help with sleep. I was concerned that taking painkillers would diminish my ability to tell when I was flaring and when I was getting better, but my doc doesn't think that's a problem (for one thing, hydrocodone doesn't affect the visible swelling I get). I still work close to full time, and most days I wouldn't be able to do that or do my usual household stuff, like cooking meals and cleaning, without any painkiller. I also know that if I go without sleep, my pain the next day will be magnified, so I give myself permission to take a painkiller if pain is keeping me awake. One suggestion for you: does your rheumy have contact with your pain specialist? If not, you could ask for them to talk to each other. If your rheumy knows you well and thinks your risk of addiction is low (based on your current responsible use of narcotics), she can pass that on to the pain specialist. That might make the pain specialist more willing to prescribe the dose you need.
deleted_user
deleted_user

I tried vicodin but couldn't handle it. Made me wired, couldn't sleep. slow release oxycontin worked pretty well but I built up a tolerance. I prefer medical mj now. I used to think it just made me forget about the pain but I think it does that AND actually helps with the pain.