Relapse

Ask Dr WHICH Tylenol.
My Rehum told me Tylenol for arthritis

I'm having a real fight to reduce each mg of Prednisone below 5 mg/day. Currently I'm at 3 going to 2.5. When I recently fell and sprained my knees, I rediscovered some new old lessons. 1. Tylenol. I take Extra Stremgth Tylenol, 2 tabs every 8 hrs which is the max dose. This is actually the recommendation of my Internal Medicine dr for my knee sprains 2. I restarted my Turmeric.
Int Med Dr explained that the knee sprains set off an inflammatory response - as part of the sprain. But for me, another inflammation response was like pouring gasoline on a smoldering fire.
I'm only 2 days i to the new routine but wow I feel much better this am. Stiff some stiffness and knee pain but much much more manageable. I'll be able to take my walk and do dog training this am before I sit down.
Also - I'm using the Dead Slow Drop. My dose is so low now, I just want OFF the Prednisone.

@dadcue has discussed adrenal insufficiency when stepping down Prednisone. He has some good insights. There's the possibility that your aches aren't necessarily a flare, but adrenal insufficiency. When I got to 5 mg., I reduced 1 mg/month. It has been working for me (just started 2 mg.) But, I'm also on Actemra infusions and I believe they have helped me taper from 10 mg. to the present, without issues. I have some minor hip and knee aches, but I'm an active 69 yo.

@ropnrose yep. I'm on Kevzara and love it. Adrenaline insufficiency vs Prednisone withdrawal is academic - I only care about a solution that does not involve an alternate immunosuppessant or increased Prednisone. I used to be very active and am terribly restless with PMR. Needlework, learning Mah Jongg and my Australian Shepherd have gotten me thru.

1 mg a month is intolerable for me.

But I'm excited - have a Beginning Pilates reformer class next week and will be returning to the gym. Also see my rheum, who is wonderful.

This is a different kind of message……
Ok, here goes…..I hope I’m not jinxing myself 🤞🙏
I am 18 months post PMR diagnosis…….numerous prednisone ups and downs, disagreements with rheumatologist, and trying every alternative therapy and bandaids in the books.
After 6 months Kevzara, 3 months OFF prednisone…….
My life is “pretty darn good!” I never thought I’d see the light at the end of the very long tunnel. Over the last couple of weeks, I wake up most days in disbelief abt how well my body responds to every move I make. My functional movement therapist is also amazed. I am back to all….hike, bike, golf, swimming laps, albeit not at my previous levels yet 😎, but looking forward with anticipation to test and see my new found capabilities.
(Reminder I am a 79yo woman)
Lastly……this group has been a savior….. wish I found it sooner. I owe a lot to you all for my perseverance and support on this journey, that no one should go thru alone. Thank you.
Hang in there everyone, and hope that my road is your road ( and my road stays straight)

@tweetypie13

It is nice to read a post about someone successfully stopping Prednisone. It's a great feeling waking up in the morning without pain and without having to decide how much Prednisone to take. Now you just need to remember to do your Kevzara injections.

What is the plan for stopping Kevzara? My rheumatologist has no plan to stop my monthly infusion of Actemra.

I don't have any disagreements with my rheumatologist anymore. Now my rheumatology visits only focus on how I'm feeling instead of how much Prednisone I am taking. My messages to the rheumatology department between visits have also stopped. I used to frequently message them that I increased my Prednisone dose because of a relapse.

Tweetie Pie 13. Love your post. I hope your story will be my story.

@linnead
Me toooo

@dadcue
You sound like your road is becoming more scenic.
Hot Diggity….👏👏👏

As I’ve said before, I hope everyone reads all posts to everyone, so many pearls to learn.

Thank you all for your words and hugs of encouragement and joy for me.

@dadcue in answer to your questions…..I don’t know the exit plan for the Kevzara, next appt with Dr is November. I hope not stop cold turkey , like prednisone, which I overrode with self taper (PCP approval).
Kevzara arrives monthly from Pharmacy after they call me for approval. I have no trouble taking, box sits in refrigerator eye level, cannot miss it. Between electronic calendar and hubby it’s second nature.
😎