New PMR patient, wondering if mornings will become pain free someday

I’ve had PMR for 31/2 yrs now…used prednisone for several years and unable to come off it …12months ago I started on methotrexate 25 mg orally for 8 months all the while reducing prednisone…got to 3 mg and had flare up …went to 10 mg for two weeks then back to 3 mg …but still swelling in knees and hips not gone …will start biologics in the next few months …has anyone used them ? Did they work ? And where there side effects ?

Welcome @nancy334, Sorry to hear you are still struggling with PMR after 3 and half years. There are a couple of other discussions that you might find helpful:
--- Rinvoq for PMR and GCA - What's your experience?: https://connect.mayoclinic.org/discussion/rinvoq/
--- Actemra (Tocilizumab) to treat PMR??:
https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/.

Do you know which biologic you will start in a few months?

Update: Last Sunday (Oct 1) I moved my prednisone up to 35mg and voila, I have found the correct level to be pain free. So I am on the schedule for 14 days (today is day 8) then I will ween off at the dreadfully slow rate of 2.5mg/2 weeks. That puts me into next Spring. Argh. Oh well, wish me luck. Shot even par 36 on the front 9 this morning, so I can't complain (2 birdies, 2 bogeys). The back was a slight different story as I started to get fatigued, but still shot 42 (78 total). 🙂

Stay tuned.
Ted

Congratulations on finding a dose of prednisone that works although 35 mg is a bit on the high side for PMR only. I settled on 35 mg when I was first diagnosed with PMR. Enjoy the higher dose while you can.

Other things were added to the mix when I stayed on that dose "long term". I had energy to spare until I started complaining about being short of breath with minimal exertion. My primary care doctor called it "exercise intolerance". He recommended an exercise tolerance test (ETT)

The ETT was interpreted as "normal" but I knew my exercise tolerance wasn't normal for me. My primary care doctor offered to do a pulmonary function test (PFT) but I declined that test.

My next visit to my doctor wasn't under ideal circumstances. I was on a long distance bicycle ride when I hit the proverbial wall. This had never happened before. It was also strange that I had an irregular pulse. When I told the story to my doctor, he thought I needed an EKG. He verified the slightly irregular pulse. The EKG result was more concerning because it revealed left ventricular hypertrophy (LVH).
https://www.mayoclinic.org/diseases-conditions/left-ventricular-hypertrophy/symptoms-causes/syc-20374314
I was told this condition was caused by high blood pressure except my blood pressure was never high and I had no history of any cardiac problems.

My doctor instructed me to take my blood pressure more often since I was taking a higher dose of prednisone. It didn't take me long to catch a blood pressure in excess of 200/100 but no other symptoms. I wound up in the emergency room. Three blood pressure medications were initiated. That was just the start of an extensive cardiovascular history that happened later.

Reducing your dose by 2.5 mg every 2 weeks might be too optimistic considering I was on higher doses for 12 years for PMR. I wish you good luck with your reduction plan. It usually takes people a couple of years to taper off prednisone when they have PMR.

I'm fairly new to this group having been diagnosed July 23. Like most I started on 20 mg Predisone then went to 15 and am now starting 12.5 x three weeks. The big improvement for me came after I started taking my dosage at night instead of the mornings. I am now waking up pretty much pain free. I know the symptoms are still lurking under the surface as certain activities can illicit pain and by 8pm I'm pretty achy. I have added one Tylenol PM and have had no trouble sleeping. I hope that I can continue on this path. If this taper doesn't do the trick then it's on to Kesvera.

Have you considered splitting the dose? I started on 15mg in May and am down to 8mg, taking 6mg in the morning and 2mg at 6.30pm. There is no morning pain and only an occasional morning joint or muscle twinge (not pain) after a day of more than usual physical activity.

Thanks for framing the perspective so well. I'm nine months into this now and know It's like touching something that's too hot and not feeling it like I should when it comes to being so pain free that I can lift an do things surprisingly well where I couldn't before without pain.
Since I have been on Prednisone (10mg@this time), I haven't had any problems with L-4 L-5 pain. That's kinda like a warning light going off telling me that I should remember to stay in the slow lane and keep my seatbelt on. And don't stress my back just cause a have a prednisone band aid. Learning more about cortisol. Thanks

I might give that a try to see if it makes a difference. I’ve also stated taking a TBS of fresh ginger daily as I’ve read that it is good for reducing inflammation. I’ve also cut out my wine with dinner since I’m not sure what impact alcohol has on this disease. Any thoughts?

Everyone reacts differently to various foods. I avoid most of the "superfoods" (turmeric, spinach greens, almonds & most nuts, etc which are claimed to be anti-inflammatory) as most of them are high in oxalates, no good for joint ailments for some of us. Ginger is moderately high in oxalates but I do have the occasional teaspoon of crushed ginger in stirfry with no ill effects. I've no idea about the effects of alcohol on PMR, but I quit drinking years ago. Cutting out things that are no good for us is always a good idea.

Sugar of any kind is inflammatory, even sugar that occurs naturally in fruit (and wine!) So are carbs, because they turn to sugar to burn as calories. You want to keep your sugar as low as possible, so kicking wine out is worth a try. Opt for berries in your diet as they are low in sugar. And low carbs. High quality proteins, lots of greens and non-starchy vegetables of all kinds, and healthy fats (avocados, olive oil, coconut oil, etc) is what works best for most people. Everyone is different.