"Evolution" of Seronegative RA into PMR

"Did you get therapy, find this group really helpful, or just gut it out?"

On second thought ... I did all of the above in addition to massive doses of Prednisone. I don't ever want to go on Prednisone again unless it is absolutely necessary. People should take Prednisone until they find a better solution. Prednisone should be the bridge to the solution ... not the solution. Prednisone was a very, very long bridge to my solution.

So you’re in the predator camp like her…I backed off talking about the pred vs. methopristone with my daughter because she is so wedded to the pred (she’s been on (a tiny rx) for over a decade without a definitive RA diagnosis until last week. She got really fat from it, and even took her cat’s steroids when one doctor cut her off it abruptly! She seems emotionally and physically wedded to pred. Her new doc is weaning her off it now and she’s miserable. Can’t use her hands this week. She’s terrified of the methopristone (Dr. Google makes it sound like a witch’s brew) and will not countenance discussing pros vs cons of both with me. Today I succeeded in just listening to her anger at the doc’s plan for putting her on meth and stopped trying to get her to a more objective place. In spite of her fear I convinced her to at least keep her next neurology appointment in June and use it as a sounding board for her fears of the changeover. The more she read about meth the more contrarian and anxious her attitude has become-says she’s on the fence but is observably ready to say to hell with it, leave me on steroids. I’m resigning as anything but a listener…I’m not qualified to cheerlead for meth and I can only hope her brisk-style neurologist is sensitive enough to keep the switcheroo from seeming like a pro forma (here’s what we always do) plan-it does seem seem like it’s off with the predator, on with the meth, live with the side effects, and then let’s hop to biologicals for $30,990/year? The apparent rote-ness of the neurology community’s “here’s how we all do it” plan engenders mistrust.

She’ll be joining this group-can you believe she’s been reading Reddit groups?! I’ve given her the Mayo info instead-thank you all for this transition trying time! Hope you can help her as you have me…

Prednisone not predator! Typo

Whew, thanks for the correction! Autocorrect made you sound biased,

Some do - but i found the majority of docs at teaching hospitals got that residency or attending option because they were effective and smart. I will forgive their arrogant and dismissive personalities if they bring the best diagnosis and treatment to the table. And then rely on great nurses to bring a human touch to the process. 🙂

Did you intend methotrexate instead of methopristone ?

Sorry ... I don't advocate for prednisone at all. I would want people to discontinue taking prednisone as soon as they can. Has your daughter been diagnosed with polymyalgia rheumatica (PMR)??? Why was prednisone started in the first place?

I don't have RA so I don't know exactly how people with RA progress to other options.. As far as I know, methotrexate is one of the first things that is tried. Few if any doctors want their patients on long term steroids but in the short term Prednisone works well. The long term side effects of prednisone are a real problem. The instant gratification of pain relief is a positive reinforcement to continue taking prednisone. However, prednisone isn't the miracle that people think it is. The real miracle only happens when people can discontinue Prednisone.

There are arguably cases of people having an "addiction" to prednisone but mostly people just want something that reliably relieves their pain. While prednisone itself is not addictive, some people who use it over an extended period may develop physical dependence. Physical dependence means that the body has adapted to the presence of the drug, and abruptly discontinuing its use can trigger the presentation of withdrawal symptoms and/or adrenal insufficiency. Trying to stop taking prednisone can be worse experience than the condition being treated ... I think.

People treated for PMR/GCA are started on prednisone and are told they will need it for a year or two. It is like a miracle because the pain is relieved quickly and reliably. Prednisone does improve their "quality of life" in the short term. However long term use of prednisone caused a deterioration of my quality of life. The struggle I had was finding something that relieved the pain when I attempted to stop taking prednisone. Methotrexate hasn't been shown to be as beneficial to PMR sufferers as it has been for RA sufferers.

When methotrexate doesn't work for people with RA, they have other options.

When methotrexate doesn't work for people with PMR , there aren't many alternatives.

I was willing to try any alternative to prednisone because I knew prednisone wasn't good for me in the long term. People tend to not be open minded to alternatives simple because there aren't many alternatives to Prednisone for the treatment of PMR. I was fortunate that a biologic worked for me. I have been off Prednisone for 3 years and counting and my quality of life is improving.

With RA, the step treatment insurers demand for me was first a low dose of prednisone -which at my very acute onset, did nothing. . I switched docs and the new one was able to convince my insurer that my acute hard onset was definitely RA and needed Humira not prednisone. That was a great result in a matter of days and Prednisone was reserved for flares.

Although i had the predictable nausea when i began Methotrexate, it didn't last very long and for the next six years i took it orally and then by injection trying to have less liver insult. But ultimately the liver enzymes were too high and i had to stop it.

Methotrexate is given as an adjunct drug to disease modifying biologics because it has a multiplier effect - both drugs are more effective together than alone.

I agree its hard to wrap your head around taking it if you read the warnings. But its been around for a long time because it works and for the vast majority it works without serious consequence.

"Methotrexate is given as an adjunct drug to disease modifying biologics because it has a multiplier effect - both drugs are more effective together than alone."

With PMR, methotrexate is used mostly as a "steroid sparer." I took methotrexate for about a year and it spared me the use of some prednisone. I was able to lower my Prednisone dose somewhat. My rhematologist thought it was helping me so she did everything she could to convince me to keep taking it. She kept increasing my methotrexate dose. My liver enzymes ruled the day and I stopped taking methotrexate much to the chagrin of my rheumatolgist.

When Actemra was tried, my rheumatologist said methotrexate might reduce the risk of me forming antibodies to Actemra. He didn't seem convinced that methotrexate would be beneficial otherwise. He did mention that methotrexate failed in his request to get authorization to treat me with Actemra. He said "all other alternatives failed' but only mentioned methotrexate. There really weren't very many alternatives other than methotrexate and leflunomide. The other failed medications were used to treat reactive arthritis.

"Failure to taper off prednisone" was the single biggest reason for wanting to try Actemra.

I did have the opportunity to try Humira for the uveitis that flared while on Actemra. Uveitis flared up almost as as soon as I got off Prednisone. My opthalmologist said Humira was optimal for uveitis. She tried to discourage from going back on Actemra. She said it would only be a matter of time until I had another flare of uveitis.

Great summary of where the thought of stopping prednisone has taken her. I know some regular old addicts and alcoholic, and your comment about people getting addicted to pred rings true. It seems akin to someone offering to run over you with a truck and is asking you to agree with enthusiasm…reading about you RA folks is making me grateful for my crippling (literally) knee OA. You get no press like like the killer diseases (e.g.cancer) but it deserves a bigger awareness profile, doesn’t it? Brave folks…