Breakthrough Pain?

I'm not keen on seeing a rheumatologist only for the fact that I live out in the country in a small town and it would be an hour and a half drive minimum round trip.

If at all possible, see a rheumatologist. It could change your life.

I am probably not the best person to have a double rheumatoid situation (Fibromyalgia and now Polymyalgia Rheumatica) because I detest doctors and try to stay away from people and infection as I have for many years. It may sound silly but I stress easily and it takes a toll. I will keep your advice in mind however. Thank you.

I can definitely relate to the stress of seeing doctors, especially new providers. The cumulative effect of medical appointments that went south has been traumatizing, so it doesn't sound silly at all.

Because I feel that way, I try to ask myself if it would be worth the stress and a potentially triggering situation to gain information that might help me move forward--sometimes the answer is it's worth it, sometimes not, and sometimes when I didn't feel ready I changed my mind eventually. The exception of course is if it turns into an urgent situation--the trick is figuring it out before it gets that far.

(Full disclosure: My dad has PMR, but he had a severe stroke, so I am a primary caregiver. But I have chronic pain myself as well.) I do agree though that with PMR in particular (I have fibromyalgia also but I've found more help with it on my own and with specialists outside of rheumatology) it's best to work with a rheumatologist. I wouldn't be able to help my dad without her, and I wouldn't have made it as far as I have without my own rheumatologist.

It might help save you from unnecessary pain or developing chronic pain--the longer someone is having pain and if it's not treated well, the more likely it is to last longer or develop central sensitivity (where your brain gets basically primed for pain even if situations that previously weren't painful) or other complications. That's what happened to me when it took too long to identify and treat my inflammatory arthritis. It's good you're keeping it in mind as an option for when you're ready though.

But to your practical question about predinsone, if you're having breakthrough pain that's lasting for more than a few days after dropping the dose, in our situation, that meant that my dad either needed to go back on the higher dose for a little longer until he could be functional again (we prioritize quality of life, and with the stroke and rehab, he's not equipped to implement a lot of other coping mechanisms for a PMR flare, even a small one), before trying to taper again and/or it meant we had to taper more slowly. Some people can taper more quickly (2.5 mg, like in your case), and others need to go even slower. For example, we've alternated 15 mg and 12.5 mg for 2 weeks, before dropping to 12.5 mg every day. Or tapered by just 1 mg instead of 2.5 mg.

As I understand it, the prednisone is the first line of treatment for the inflammation, but it can also mask a bunch of other symptoms and make you feel good even if PMR inflammation isn't the problem. It can be hard to pick apart if the pain is from PMR or not. Because of that, my dad's rheumatologist always runs labs before we taper, so we're not doing it blindly. (If you're not doing it now, the up side is you might be able to ask your doctor's office for lab orders without having to meet with them, as long as you're okay with blood draws 🙂

I hesitate to call anything a "cure," but PMR can go into remission--I prefer to say "remission," because there's always the specter that it could recur.

But hope it helps to hear one family's experience, and wishing you all the best.

Thank you for sharing that emo. I was diagnosed with fibromyalgia as a main condition since 1999 as my doctor's mother suffered from it and he would give me handfuls of Tramadol samples that he said helped his mom. I'm still on it today (100-150mg per day) though I was taking Darvocet prior to it being discontinued and that worked better than anything else I've tried, including narcotics from a pain clinic *shudders. I did see a rheumatologist back then who told me to swim, I kid you not. I was able to work until 2005 or so and went on disability. The judge approved it for the migraines rather than the fibromyalgia, go figure.
I had gotten very good knowing my limitations as well what to expect fallout-wise when it wasn't possible to stay within those parameters. Now PMR, really not what I needed. Suffice it to say that I can easily recognize PMR vs. fibro pain plus the fact that the Tramadol barely helps the inflammation if at all.

Yikes, I agree... FYI, when I mentioned a pain specialist, I did not mean a pain clinic that relies mostly on narcotics ::shuddering right with you!:: But glad you've found some things that work.

PMR is not what you needed, probably not what anyone needs. I thought fibromyalgia and my other chronic conditions were challenging to deal with (and they totally are), but when I saw just how much PMR completely incapacitated my dad when he started having symptoms, it was frightening. He had severe fatigue and such bad pain he couldn't get out of bed for days, and the worst part was his PCP was completely clueless and their clinic team would not believe my mom and I when we were trying to explain he has a family history of autoimmune conditions and should be screened for autoimmune conditions and inflammatory markers. My mom practically had to wheel him into the clinic to see a rheumatologist by the time we found one, and we got lucky and didn't even have to wait as long as it usually takes.

I'm wishing you the best and hoping you'll find the right path with the prednisone and the taper, and that it doesn't rock the boat too much with all the good work you've done with the fibro.

Yikes, I agree... FYI, when I mentioned a pain specialist, I did not mean a pain clinic that relies mostly on narcotics ::shuddering right with you!:: But glad you've found some things that work.

PMR is not what you needed, probably not what anyone needs. I thought fibromyalgia and my other chronic conditions were challenging to deal with (and they totally are), but when I saw just how much PMR completely incapacitated my dad when he started having symptoms, it was frightening. He had severe fatigue and such bad pain he couldn't get out of bed for days, and the worst part was his PCP was completely clueless and their clinic team would not believe my mom and I when we were trying to explain he has a family history of autoimmune conditions and should be screened for autoimmune conditions and inflammatory markers. My mom practically had to wheel him into the clinic to see a rheumatologist by the time we found one, and we got lucky and didn't even have to wait as long as it usually takes.

I'm wishing you the best and hoping you'll find the right path with the prednisone and the taper, and that it doesn't rock the boat too much with all the good work you've done with the fibro.