Extended release oxycodone-long-term use?

Hi. I am new to the world of PMR and it's horrible....In the 90's I was diagnosed with chronic fatigue, fibromyalgia, Sjogren's disease, osteo arthritis and basically managed my pain with hydrocodone and tramadol with no side effects, and plaquenil. These meds kept me working in a very crazy busy all consuming career. In 2015 I was diagnosed with RA. We doubled the placquenil and added 3 mg. of prednisone because I got infections when we tried methotrexate. Things settled...I started having problems with my knees and eventually had to go on disability. Last year I went through a big downsizing and sold a house and moved to DE from DC area. They've was hard on me physically.and I noticed a big increase in my symptoms. Because of the issues with pain meds as my pain increased the meds did not change. I have tried oxycodone but.it makes me loopy so I prefer hydocodone which has no side effects for me. I started to have a new type of pain.in new places and eventually.I could not use my hands. I went to my new rheumatologist thinking it was RA but she thought PMR. So I was.put on 20 mg. of pred. Then had to start reducing. When I got to ten.things went south, but the focus seems to be on reduction of the pred. I am struggling to learn about how to manage. The thing I realized is I am not.functioning very well with this. It's very different than my other conditions. I am waiting for labs to see.sed rate etc. I am on 12.5 pred but my pain is bad. So I will go back up. I would think med decisions would be made on pain...no? So on what can help with pain for me was 800 motrin. It's not amazing but it has helped a bit...3 x day. If your husband can't take oxygen he might try hydrocodone instead. That has been the best for my knees. Since I have been on it since the 90's and my PMR pain was so bad I can't say what it could do for PMR.
.but I believe trying things is good. So way too much info there but I wanted to tell you about the meds...and see if anyone has advice for me on the decisions.on b reducing the dose...when and why. For 30 years I managed these conditions in a way to function. This is different....I am a bit lost. Any advice or info is welcome! Thank you for reading.this. take care

Hello @njtodctode, Welcome to Connect. It does sound like your rheumatologist is right about it being PMR. I think one thing all of us have learned with our PMR struggle and tapering down on prednisone is that you definitely need to listen to your body. If the 20 mg prednisone pretty much eliminated your aches and pain within a few hours and keeps you pain free all day, that is pretty much how PMR is diagnosed. Tapering slowly is the name of the game with PMR.

There is another discussion you might find helpful:
-- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

When did your rheumatologist diagnose the PMR and start you on prednisone?

One quick q....I have not gotten the.4th covid shot. I want to get.the.updated version in Sept. but I am nervous with PMR AND pred....not sure what to do. I got pretty sick with all doses for about 4 days then fine. Another thing to consider. Have you all gotten the 4th.shot?

Hi. I agree the real key for PMR is prednisone. I was wondering if flexibility might help my hips and back. I cannot imagine being on 40 of pred. I already have a Charlie Brown head....and working towards Pillsbury Dough Boy! But right now I just want my.pain to settle. I am sorry you are dealing with layers of conditions....I am glad you.were able to work. I am sure.disability was a relief but also.very difficult to.accrpt on some level. I hope your PMR responds to the pred and you can successfully reduce your dose. .take good care of yourself!

Thank you so much. You're right about disability: it was the hardest thing I ever had to do. I loved my life and had to give up everything when I left my job. But I am fortunate in other ways and try to remind myself of that. As for Charlie Brown, I have long surpassed that, sadly. I call myself a Steroid Puffball. Like you, I had terrible PMR pain in my hips: at one point I had to use a walker and later couldn't walk at all. That's when they put me back to 40mg, and I finally accepted prednisone as the lesser of the evils. My doctor said that if you step down and still have pain it will aggravate the condition, so I'm following her guidance to take it slowly. I hope you get to a dosage where your back and hips are better. I make myself walk as much as I can (not much) to try to maintain some flexibility. I really hope you get some relief soon and appreciate your kind thoughts.

You have totally summed up what has gone.on for me...I need to talk to my rheum. We are just reducing even tho symptoms are there. I love that your doc said if you reduce too soon it makes it worse because that is totally true!! I would assume...you know better than I that at the top dose you should be close to pain free (relatively speaking) before you start.reducing....and then reduce after things.are steady for a bit. This is not a linear disease. I need to hear what my doc says healing is....so you take the pred then what.happens
What is getting better? Anyway finding this site. has been the best learning experience. I have such gratitude for you all already! Be well...take it slow.and hang in. Hugs...m

From what my dr said, you need to be mostly pain-free before stepping down. I'm at about 90% so I'd like to try it now, but she's not convinced that I've given it enough time to totally calm down the flare--and the last thing I want is to have to start all over again so I'm trusting her. A lot of people on this site have talked about how their drs (rheum, neuro, GP) focus on getting off prednisone to the exclusion of almost everything else. I know it's a toxic drug, but to me, the worst thing would be taking just enough to lower the pain but not enough to actually eliminate the inflammation. (Almost like only taking enough antibiotics to alleviate the symptoms of an infection but not enough to eradicate the infection itself.) It's such a hit-and-miss. Some days I have very little PMR pain, then others smack me right back down. Like you say, not linear. I hope your rheumatologist is responsive to your concerns. This site has been amazing! I felt totally alone until I found it. Feel free to reach out anytime and take care. -Leigh

Thanks for the reply. I was diagnosed in May. The 20 worked after a few days. Stayed on 20 for 2 weeks then 15. Symptoms backtracked some. Then 10. I was told to try 12.5. Didn't do much. My pain doc suggested I try 20 again which I did. 2 weeks then 15. My labs showed some reduction in my inflammation level. But I have intense pain in my hips and back and shoulders. I can't do anything. Never had back pain before. I am now on 12.5 but I think I need to go back up. My.rheumotogist wants me to try an immune med too....I don't really want to. Methotrexate made me sick right away...so she said there are others but......not sure what to do. I hope I get my labs today that will give us a piece of info. So.