I am not sure I am going to stay with the rheumatologist I have now. They seem more concerned with covering their own ass…ets and to save themselves some paper work. My pain is increasing yet they said Friday they were going to cut back my pain meds (oxycodone) since I had been on them for a while now. Umm hello, im growing tolerant of them and need something stronger not to lower it. Im the one who brought the PsA diagnosis to him asking if it could be that and it was like a light bulb went off. I mean c’mon hes seen the xrays, nuclear bone scans etc… he has to know I am in pain… Ive been seeing him for almost 3 years now and I cant tell you how many times ive had a less than 10 minute consult with him. It’s a “yea your joints are tender and swollen, continue the meds… come back in a month”. Is this normal from what any of you have experienced and have read? Maybe I am impatient but I want something after all this time to work, even just a little!
It is common or Rheumies to take you off Oxy as it makes PsA pain worse and few if any prescribe or manage them. Tolerence is BIG red flag The rest I don’t know about.
My rheumatologist doesn’t do pain meds. If my pain level and inflammation are that bad then it’s time to look at my meds and readjust. Possibly add back in daily NSAIDs if needed. Not pain meds. I wouldn’t necessarily be so quick to go looking. That said, off exams are cursory, you feel that you are being dismissed, and your treatment is not aggressive, then it’s time for another opinion.
What kind of medication are you taking for the PsA? I know different meds can take different lengths of time to kick in, and during this time, my Rheumy kept telling me to give it another couple of months to see if relief was coming. I was told my medication can take 2 weeks to 6 months to begin seeing relief, and sure enough, it wasn’t until 6 months that I began to see noticeable improvement and for my joints to stop swelling. Frustrating for sure though.
–Lisa
I started on Humira. It took about 6 weeks to feel any difference. After about a month of slight progression in the right direction it began to regress. Rheumy advised to stick with it and to come pay him another office visit in 6 weeks. 6 weeks later I was back to where I was prior to the Humira. I was switched over to Embrel, this time it was about a month before I felt any improvement. Well its been 3 months now and i’m right back where I started before I ever put any kind of biologic to work inside me. I had read some studies about Embrel users outside of the states doubling the dose of the once a week injection and how much difference it had made for those patients. I suggested this to him and he said no, were not going to do that right now. Just to be able to move and function at work I take the oxycodone, 2 tylenol arthritis and 1000mg of ibuprofen. in the morning and at night.
Is your rheumy aware of your cocktail? That is just short of a lethal dose of acetaminophen (max 400mg/day) and 4000mg too much ibuprofen/day (max 1600 -1800/day Its not a question of IF you will have liver/ kidney failure, but when. If he had any part of it, I definitely would be going elsewhere.
The other important note is that your liver is so damn busy trying to keep you alive and your kidneys functioning, there is no way it can make use of the biologicals in any way shape or form. My guess is one of the reasons he is cutting back on the Oxy is for that reason… There are prescription NSAIDs you take in much lower amounts with out the potential of trouble your OTC meds can cause.
yes, yes he is and has told me that if it is needed to continue that regimen. Weve gone up and down the prescription tree of NSAIDs and most had adverse effects one way or another. Im seriously considering looking into a Dr. that would support actually treating me and possibly in a more natural way.
Good plan. I’m not denying your pain. It just needs better controlled. A multi disciplinary pain management practice is where I would start. IFa pain managemt practice takes patients without referal RUN. A good one can hlep and the methods ARE mostly natural.
I’m with TNT on this one, that amount of painkillers is doing your body no favors at all, and in the long term, really could lead to organ damage (not to mention the issues with opiate derivatives and our pain systems).
I totally understand the need to operate at work though, so you are right, you need to look at other pain options whilst you find a DMARD or biologic that works to control the disease.
What do you do for a job? Is it exacerbating things? Can you have even a short break / concessions while you try to get this figured out?
I work in medical billing administration. It isnt the job that causes the pain necessarily. That is the cocktail I take just to be able to get out of bed and walk, shower drive etc… you know basic living functions. When im not working I try and not take any of them but that turns into a day of sitting in a recliner refusing to move.
same! NSAIDs for inflammation are all.
It’s my experience that most Rhematologists do not give their Psa patients oxy or hydrocodone pain meds. You will probably have to go to a regular pain clinic for those kinds of meds. If you can’t function without those pain meds, you are either addicted to them or your pain is so great it disables you. Either way, when you can’t move around without strong pain meds it hardly matters how you label it. You really should take it easy on the OTC meds, though, and don’t take more than the recommended dose - you do’t need to contribute to any further damage to your body. A pain clinic may end up to be your only recourse.Just don’t give up on the solution that is right for you. Keep positive and do the best you can with what you have!
Blessings!
Toni
I seem to have the opposite problem. I’m taking Etodolac as my anti-inflammatory. It works well, but doesn’t last the 12 hours between doses. We tried going to 3 a day, but Anthem said no. However, Anthem is totally fine with supplementing with as many Tylenol 3 as I can tolerate! I am not sure that they are working on the pain so much as nodding me off to sleep thru the pain. But, I am not happy about now being on opioids long term. And it is frustrating that while we hear about the “opioid crisis” in America, my insurance company, and not my doctor per se, is forcing me onto them.
Peace,
-Dave
Dave, that is truly frustrating, and not a good long term plan from what I understand. Opioids mess with your pain system if you take them long term - then your own pain system starts to cause you pain. (At least that’s my laymans interpretation of it).
Dave, if this is just about insurance, not a medical recommendation from your doc, what would happen if you developed a SE to codeine and couldn’t take it long-term anymore? Would the insurers change their tune on other alternatives?
The prescription required prior auth, the NP working with my doc said he tried but they would not approve it. I did look about online, and drugs.com had a “maximum suggested dose” which 3x would have exceeded. I do not know if that max is FDA or just recommended but I am now assuming that it was somehow related to that.
I am going to just try cutting the ones she did give me in half and see if that helps me get through.
Peace,
-Dave
I’ve now been on five biologics, Humera, Symponi, Remicade, Stelara, and now Cosentyx. They all worked but I continued to have flares until I started the Cosentyx. It did take about two months after the loading doses were complete to eliminate the flares. In the past, when pain was intolerable I was put on prednisone or a medrol dose pack, both work, but I hate the side effects. That said, I refuse to take any narcotics to handle the pain. My sister has fibromyalgia and I’ve watched her become addicted to oxycodone, needing progressively higher doses. It has done nothing to directly work on controlling the disease, only the pain. Even after an L2 to S1 spinal fusion I weaned myself off the oxycodone within two weeks and the hydrocodone within the next four weeks. I hope you can find a treatment that will actually help the PsA instead of simply treating the pain.