You’re in pain? Can’t you just take a pill?
Yeah, I can, but it’s not that kind of pain. A tylenol or an ibuprofen just isn’t going to cut it.
RA pain can be severe pain. It’s definitely the most severe pain I’ve ever experienced. But it’s not always that way, some days are mild. And for some people RA pain is always mild. It’s very personal. And it’s that kind of disease. Different for everybody.
So what do you do about heavy duty pain? You take heavy duty pain killers.
Oxycodone is the strongest oral pain killer available. It sits just above oral morphine. There are also a few skin patches that deliver a steady dose of Buprenorphine or fentanyl.
I’ve tried all of these, and the one with the least side effects for me is oxycodone (endone). Again, that’s individual.
And this is where the problem comes in. Side effects.
What do heavy duty narcotic pain relievers do?
Well, firstly they don’t take all the pain away. They just take the edge off. The big problem is that if you take a high enough dose to get rid of all or most of the pain, you are basically sedated out of existence.
So you haven’t gained much. You’re still not able to function. You’re still not able to interact with the world. You’re still not able to achieve anything meaningful.
But at least you’re not in pain.
So the thing to do is to find a balance. Take away enough pain so that you can do the things that need doing (like feeding the kids) but not turn yourself into a zombie.
It’s a tough balance.
Especially as the days go on. The cumulative effect of a narcotic like morphine or oxycodone is more and more nausea. Dizziness. Headache. Itching. Apathy. Depression, constipation. Seriously, this stuff can take away your will to live!
And turn you into a non-person.
I take oxycodone every day now. Still a very modest dose, comparatively, and I only take it when I absolutely need it. If I need more than three doses to get through the day, I take it as a sign that I need to up my prednisone. If I’m already maxed out on prednisone, then I just need to suck it up.
When it gets too bad, I take what I call ‘morphine holidays’. When my mind and body just need a break from the pain, I accept that I am going to spend three days being a zombie and be useless.
But the pain will be less, and my body can recover for a few days. My mind can reset. I can rest and swirl around in bizarre drug induced dreams for a few days, then return to reality refreshed and ready to tackle the daily pain anew.
To do this I need another adult present, however. Since my husband and I split, it is impossible for me to take a morphine holiday. And maybe that’s a good thing. Like most holidays, it is nice place to visit, but you wouldn’t want to live there.
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Have you tried the Targin, I find its the only narcotic one I can take and still function. Ask your GP about it.
Hi Sarah, yes thanks I have tried Targin. I have some in the cupboard, in fact. Its slow release oxycodone, but I find I have more side effects with Targin than Endone. I’m guessing you take targin regularly? There’s so much trial and error in finding a medication combo that works.
Yes I take Targin twice a day, plus for breakthrough I have panadine forte, mersyndol, OxyContin – god I sound like a drug text book-haha, but that what RA dose to you! I always take the Targin, but only take the others when needed, during a flare up that can be 4 times a day! I am sure I rattle when I walk(hobble). I hope you find some help soon, my rheumo just called to say I start my treatment a week on Monday- Cimzia- he said if It is going to work it will reach 80% by the 2nd dose, if its not working at that time, then I go up to the next bio. Hope that makes sense. I know how frustrating the whole thing can be, I have had this for 4 years, but now things are coming together, and they will for you too.
I know what you mean about rattling!!! LOL. And also having an encyclopediac knowledge of drugs…particularly pain meds! Its just essential knowledge when you have mod-severe RA. Good luck with the Cimzia!!! Let me know how it goes…they are scarey drugs, but they can work miracles. I hope Cimzia works its magic for you!
Hi there, I take DI-hydrocodeine, I’ve been on it now for several years & I, like you take it daily. Also like you I know it’s a really bad day if I have to take more than 3 doses. I’m also aware that as things progress and the pain worsens over the years that I need to have options to take more so like you say it’s a balancing act to ‘leave something in reserve’. I’ve been on it so long that I no longer get that ‘whoosh’ as it kicks in (except strangely for the odd really ‘good’ dose). Pain management is a constant thing in our lives with RA & I don’t just rely on the pain meds but I also use heat, lots of rest and gel rubs too but the pain pills are something that I feel I could no longer cope without.
Gillian, I agree…I could no longer do without my pain meds. But as you say, heat packs, rubs, ice, hot baths, sometimes I’m even lucky enough to get a gentle massage from my ex-husband. We just have to use whatever we can. Funny you should mention the ‘whoosh’…I don’t get that anymore either. I kinda miss it 🙂
Hi, I am a 21 year old Rheumatoid Arthrutis/fibromyalgia/anemia patient. I have currently been on prednisone for 6+ years, as it is the only thing I have found that controls my pain and swelling, I have tried methotrexate (which caused extreme illness and took me on the edge of death) and enbrel (which was beneficial but no longer covered by my insurance) and am currently waiting to see a rheumatologist about other options for treatment.
Anyway, the reason for my post is the prednisone you have mentioned, what is your dose and how long have you been taking it? Every doctor I speak with frowns on the fact that I have resorted to prednisone (as it is terrible for your body) and at this point, I had no idea there were other RA patients also taking prednisone as a daily routine, I am interested in hearing more about your experience with prednisone and the interaction it has has with your body,, and if that helps you in the same way it helps me, maybe other treatments you have had experience with could help me as well.
Thank you,
Madison
Hi Madison, I get the same thing…doctors constantly telling me I must get off prednisone. But, like you, its the only drug I’ve tried that helps at all. Methotrexate almost killed me too, so I can really relate. To answer your question, I have been on prednisone for about 18 months now, 15mg daily. I have tried to taper off a few times, and gotten down to 7.5mg, but its totally ineffective at that dose, I’ve also had bursts up to 25mg to get me through Christmas, moving house, etc. But mostly I need the 15mg to function. What dose are you on? I am starting to suffer bad side effects from the pred tho. My skin has become very thin and itchy. Everywhere I scratch bleeds, so I am covered in festy sores at the moment. So I need to taper down off pred completely. I know that without the prednisone I will likely be bed-ridden, but I have no choice now. It has also affected my blood sugar levels, but I am on medication to control that.
I hope you can see a rheumy soon, and they can get you started on other options. There are many drugs…I hope you can find one that helps you quickly. I understand wanting to stick with what works – I was the same – but I think I now see the doctors are right. Prednisone long term will do more harm than good. Good luck, and keep me posted? I’d love to hear how your appointment with your rheumy goes. Good luck!
Wow, I discovered your blog by accident but will add to my reading list! Thanks for sharing your experiences, there is definitely something comforting to read someone else is dealing with the same crap I am ???? (psoriatic arthritis 15 years)
I just had a massive horrible flare up, one like no other. It Started after unrelated back disc bulge, pain was horrendous over Christmas so doctor gave me endone to deal with it. The day after I started taking it I woke up with major joint pain in places I’ve never had. Each day- new pain: four days later I had severe pain in every limb, every joint, every tendon.
After seeing doctor again she put me on large dose of steroids to get arthritis flare up under control. I stopped endone as it was only really taking 10% edge off. Two days later no more joint pain- feeling fantastic again!
I presumed it was stress of back pain etc that brought on flare up. Until this morning…. Side effect of sterioids is insomnia- last night I just needed a few hours sleep so I turned to the leftover endone to give me that chance. And this morning woke up with all the random joint pain again!
I just wondered in your many conversations whether u had heard of a medication being a trigger for a severe flare up?
Hi Mandy, I’m sorry for the slow response. I haven’t heard of medication causing a flare like this. but anything is possible? It sounds like Endone is not the drug for you :(. There are plenty of other pain relief options, so I would talk to your doctor about it. Twice is enough! don’t want to go through that again!
I’m a little late to find this website, but I am glad to have found it. I have just been switched to Kadian 10mg from codeine contin, but I dont think I am at the right dose yet, since the pleurisy pain I frequently get has kept me up most of the night.
I was surprised to read that your prednisone dose gets as low as mine (8mg) but going lower just invites more difficulty, even with Humira.
I often wonder how other RA patients live. I’ve been sick for 26 years (46yr Male), with agressive RA all along. Over the last 8 years or so my neck has been pretty badly damaged, and so here I am starting morphine this week, and wondering what shape my life will take now. I still have a little boy to care for, so I have to find balance somehow. I cant explain how I manage, but I think we are all maybe thinking the same thing.
Hi Simon, it’s very tough to take care of kids on your own when you have aggressive RA, hats off to you. And pleurisy is terribly painful :(. Needing daily morphine is tough on many levels, not the least of which just accepting that you need it! And it takes time to find a dose that gives you better function, and to get used to the physical effects. I really hope that it helps you, and you have a better quality of life. And that you have supportive people around you while you adjust. Im sure your doctors want you off prednisone, but I understand. For some of us, it just isn’t possible, even with other medications. I’m guessing you would have a degree of adrenal insufficiency, and maybe you’ll always need some prednisone. I’m trying to get to 7.5mg (have been for many years…LOL) but I haven’t made it yet! Thanks for being here and commenting. Wishing you all the best.
Please HELP! Can anyone give me the name of a doctor in Memphis that will help me deal with my pain…I have excruciating pain daily and my knees are swollen, fluid filled, pressure, feels like my kneecaps are being fried in a skillet, and not to mention the neuropathy!! It seems that the doctors I have seen aren’t hearing me! It is obvious that I have a disease process going on sure to the swelling, however, I am treated like a “drug seeker.” I have tried the creams, ointments, Tylenol, aspirin, with no pain relief. I get anxious and depressed because I feel hopeless….oh I believe I have either osteo of RA? Can anyone enlighten me? Ty
Arthritischick….I need your advise please!!
What’s going on, Sandra?
Hi All. I have psoriatic-arthritis which as the name suggests is a type of arthritis connected to (hands & feet affected) psoriasis. I live in Australia which has a government funded medicare system so we aren’t dependent on the whims of insurance companies. Rheumatologist here use steroid sparing meds like methotrexate and leflunomide. Over the last decade the govt has started subsidising the new bioligical state of the art class of drugs for specific types of arthritis. Previously these drugs cost about $60k pa but now are available for $6.20 per script. I’ve tried a couple of different one with varying success. While one will help with the arthritis it will aggravate the psoriasis and vice versa. I’m due to see my rheumatologist next month & am hoping to try another one as the arthritis is now severely affecting my sternum – extremely painful. Are these types of drugs an option in the US? I can track down the names and more information if you are interested.
Hi Sandi, I’m in Australia as well :). I’m sorry to hear that you haven’t found a biologic that works for you yet, I’ve only found moderate improvement with the ones I’ve tried so far. Hope the next one helps the arthritis AND the psoriasis. Good luck!