As some of you probably know I’ve always held out against using steroid meds because I would rather use them as " big guns" if I have major joint swellings and far greater problems with mobility than I currently have.
During my last rheumatology app. the doc seemed rather put out when I refused a prednisone prescription. She had not seen me before, and didn’t seem too “au fait” with me or PsA.
My pain is not noticeably worse except for my upper back (although its vastly improved now I’ve rested for a few weeks) but my fatigue is bad, enough so that I can do a few light chores then have to lay down.
But its nagging at me…why would I be offered steroids? For the fatigue? Because of my back? Am I being naïve in refusing them? I’ve really started to question myself.
I guess it depends on the area. It is more difficult steroids than narcotics (and those aren't easy) where I live. I'm scared to death of the droids.
They are doing something different here for accute flares. The pharmacists put it together. Essentially they are doing six injections of torodol over two days. If its inflammation its gone.
Docs who hznd out a droid script at the hint of a problem are plumb lazy IMO
Thanks lamb, I think your opinion is bang on, I’d just started to question my choice. Not sure about torodol here, but its worth some investigation 
Louise,
Don’t question yourself. Steroids are a short-term fix, and best kept for when something is really out of hand, exactly as you say.
They will make you feel better in the short term, but come with oh so much baggage in the longer term. I’m with Lamb, docs who rely on steroids for PsA are lazy (I’ve got one of those - I’m going to slowly and quietly get another in the next 12 months).
Just ask if you need a list of all the reasons not to take steroids low dose long term, though I’m pretty sure you are familiar with them!
Thanks Jen, as you say I know how bad long-term use of steroid are. That’s why I’ve always said no. Think I’m probably just mentally a bit wobbly as I’m off work and feeling useless lol
I have avoided the steroids too. They scare me. When I was in the Gap (before effective treatment was found) I did do tapers. They felt so great. I felt like my old self again! The problem was it would energize me too and I would try to do all the things I had been unable to do. As the taper decreased the steroid I would get anxious to get done everything I had been unable to do. And I would find myself mourning my loss of function all over again. It made me very sad and anxious. My husband saw me as bitchy and demanding. I also remember the patients I have taken care of after long term high steroid use. I don't wnat that. So I don't do steroids or narcotics any more.
I've been on 7.5 - 5mg of prednisone for two years now. No, it's not a great thing to do, but it does help keep me upright and walking. I'm not sure what the health benefits and risks are of long-term low-dose use compared to tapers. My endocrinologist tells me that 5mg/day should not cause adrenal suppression. He is monitoring bone density.
I wouldn't characterize either my first or current rheumy as "lazy". My second one, about whom the less said the better, suggested weaning off it, but the drop from 5mg to 4mg was awful, and I ended up back at 5mg. I'm currently beginning my third biologic. If it works, the pred will be the first thing to go. In the meantime it's a lesser evil than the pain and dysfunction I would have without it. I don't get along too well with most NSAIDs and I hate narcotics, so choices are limited.
Keep in mind that in the early years of prednisone use, RA patients (no such thing as PsA then) were given doses as high as 150mg/day.
I can certainly imagine how difficult it would be coming off a burst of pred. and going from feeling good to …well, not. Its probably a bit like when I was on morphine for the kidney stone and kidney infection episode. It was the first time I’d been pain free for years and was a bummer to have the pain back again.
Guess I’m lucky enough to be able to say no and still be able to function even if I have periods of time off work
Opinions...we all have them. :) Here is mine. I have had a shot or two for flares but I have also had a few shots and days of high doses for other things like asthma. Over the years I have seen many fearful people who avoid the use of steroids. Although I understand the consequences I also understand the benefits. For me they are no worse than the other toxic drugs that are in use. Methotrexate for goodness sake! I don't think daily use is a "good" idea to manage PsA but I like the steroids when I can't walk or in the case of asthma, breathe.
I also have an opiate prescription and use those when I need them. Keeping in mind that nobody knows how long we have on this earth so I am living my life daily and trying not to suffer too much along the way. I need to participate with my family and earn a living so I do what I have to. Oh and I am a toradol fan but everything has it's side effects. Like I said just my opinion. :)
On top of my PsA, I also suffer from chronic migraines. I have anywhere from 23-28 migraine days per month and this began about 4 years ago, just before my PsA diagnosis.
My old Rheumy was very anti-steroids. She never prescribed them. Last July, my family moved from Southern California to Sacramento, and my new Rheumy is just as against steroids as my previous Rheumy. I’m currently on Cimzia and methotrexate.
Right now I’m in a horrible migraine cycle and have had to go to the ER several times in the last month for IV fluids and pain control. The last three times there I was given an IV steroid called Decadron. It’s supposed to help break my migraine cycle. Has anyone else taken Decadron before? I’m worried about how it will affect my PsA.
Thanks everyone. I appreciate any feedback you can provide.
HoneyBunny and Anna, I completely agree with you…I’ve always believed that was the time to use steroids when you are in an acute phase and need steroids to be able to move or as you say breath. I have a good friend who suffers asthma and has short courses during chest infections. I’ve only once had such acute episode, when my thumb joints swelled alarmingly in my first flare, but wasn’t offered steroids even then by my Consultant.
Ibeth, I sympathise about the migraines, its hard to break the cycle of migraines, I’ve found that once I started to used anti-inflammatory meds (firstly naproxin then meloxicam and now ketoprofen)my migraines are so much less frequent. Do you think its this time of year that effects you? as my worse migraines are the start of spring when it starts getting brighter as I’m light sensitive. Hope you start to get some relief soon
Hi Louise,
I should clarify that I was referring to long-term, low dose as being something you should avoid if you can, because that’s what I interpreted the question to be about… If its needed to stop you from losing your job, or equivalent major impacts, if all other avenues have been tried, then its worth consideration.
In my case, Rhuemy decided to tell me it would have no negative side effects at low dose, before we tried biologics, which are statistically a hell of a lot more effective (not to mention actually being a dmard).
The long term low dose steroids helped my fatigue. They also had a stack of nasty side effects. And when I finally begged and cajoled him into trying biologics, they resolved the pain, swelling, and particularly fatigue in a spectacular way. Only problem was I still had to go through 4 months of steroid withdrawal. Not Rebound, true withdrawal.
Don’t get me wrong, I still use them, probably once a month- ish for stomach flares. High dose, one or two days, no taper. Still don’t love them, but its kind of like the breathing issue - best not to land in hospital for emergency surgery.
There’s nothing wrong with considering them, or using them short trem, but my experience has been that being lulled into a false sense of security because you feel better, whilst they are not really a dmard and are insidiously causing major side effects, is not a positive way to manage the disease, unless all else has failed.
But I reckon the crux of it is this: you have always made good, considered decisions about your disease before. Have confidence in yourself, and discuss the issues with your new Rheumy, and I’m sure you will make a good decision for yourself this time
Thanks Jen, I knew exactly where you were coming from and was probably just a bit wobbly about my choice. Come to the decision that I think I know my own condition better than the rheumatologist I saw who didn’t know me and seemed under the impression I had RA not PSA to start with
Absolutely Louise!
The last sentence of my post was for you, the rest for readers who probably don’t know my history, and not lots of yours take care