Does PMR go away permanently?

@carolneedham, @dadcue, @tuckerp and all... Carol, please have a heart to heart with your rheumatologist about the tapering dosing with Prednisone. I'm hearing that many doctors taper this medication far too quickly for the body to handle the reduction without reoccurring symptoms. Prednisone is a funny animal. The body gets dependent on it for taking care of inflammation and reducing these crazy symptoms we have. It is a wonder drug for much of those needs... but, as we taper off, the body has to readjust to having to make it's own anti-inflammatory chemical and that sometimes is very difficult or not a reasonable expectation. So, if we take it very slowly, do a very turtle slow taper that seems impossibly frustrating, it can work, at least it can wok to some point lower than what you were requiring. Once my Rheumatologist and I did that super slow walk down, I was, after a year at 20mg, able to get down to 15 mg before I had a super bad symptom flare reaction. It was bad, but we upped it back to 17mg for a week or so and settled things down, then down a 1/2 mg for a week, then 1/2 mg for a week... like that.

I got down to a semi-comfortable 16mg after 14 months tapering. That's where we held it for months... Then, a couple of weeks ago, I had a serious flare with bad symptoms and now am back up to 18mg to sort of control, at least reduce the symptoms to a tolerable stage.

Now, we are starting the Kevzara treatments in about a week. I am thrilled. But, we worked hard to taper very slowly first to avoid this route. I tend to have a lot of infections, sepsis, and several infection areas of concern which is the main concern with Kevzara, as it may increase the likelihood and severity of infections, in my case sending me to the hospital.

So, we are being prudent but I'm elated! Ready to get moving forward! I should have my first injection in 5 days. I have to go tomorrow to Walgreens to get a flu shot for this fall as vaccines should be up to date and no live vaccines allowed.

So, I've been doing my research. Feeling much better about this whole thing. Didn't know there was a possibility of something other than Prednisone, I've been on since I was 40, so I am truly anticipating good things.

Hope some of this helps you. Do be forthright with your doctor and let him know you are willing to take the taper slow and easy until a biologic is recommended...
Blessings as you walk this crazy path! Elizabeth

@ess77

I'm already on a biologic called Actemra (tocilizumab). Basically it works the same way that Kevzara works. After 12 years of taking Prednisone daily for PMR, I was able to taper off and I have stayed off Prednisone for the last 5 years. It wasn't as easy as it sounds but Actemra works well for me.

My first dose of Prednisone was at the age of 32. I never became dependent on Prednisone until PMR was diagnosed at the age of 52. Taking Prednisone daily and on a "long term" basis is what creates the dependency. The dependency that happens with long term use might happen sooner than people think.

The dependency you speak of is why Prednisone is tapered off slowly even with Kevzara. However, if Kevzara keeps PMR in remission long enough you should be able to overcome the dependency after your adrenals recover.

@dadcue and all... That's so interesting, dadcue, and you helped explain so well. Is Atemra the drug that was found to help RA symptoms in this way? I had a friend whom I believe was on that drug when it first became available and had some good results, for a while. There are several now that are somewhat similar that can help the body recover it's ability to recover some of the damage caused by the long-term use of Prednisone. Right? progress is being made in this field! I know I sound excited... I suppose I am as this has been such a long journey with steroid use and increasing damage to my body. That had to be as we were constantly told there was no alternative. So, we did what needed to happen. I fully expect the journey to be difficult, but for the first time in years I have a glimmer of hope of some relief from PMR and possibly other autoimmune diseases, as well as some of the Prednisone damage perhaps. My doctor is surely not as thrilled as I... she knows what can be facing us down this road.

This is truly an exciting time for folks with Prednisone dependency. I took 80 mg Prednisone when I was 40 for about 8-9 months, as I recall, until I developed the most serious side effects the doctor warned me about at the time... brain fog to a serious level and pretty serious depression. It was helping some of the Sarcoid symptoms, but once the damage got to a certain level we backed off and began the tapering process. It took forever, and I was never truly off it for long, as my lungs would develop infections that needed the Prednisone to get it under control. So, I suppose the adrenals were losing their ability to work properly beginning those years ago? Interesting...

I do know the tapering speed is something that is too often ignored after we get to this point of dependency on Prednisone. Several doctors have focused on reducing my Prednisone use as it has been affecting my vascular system more, as well as I suppose everything else! I was mostly concerned for years with Osteoporosis,which I did have at 35 years old, but it improved during the years I was generally off Prednisone, until a decade ago when I had to get back to regular, frequent use to beat lung and other infections. Now, the osteoporosis is worse, as is calcification of veins and arteries, thinning of skin, veins, small vein vasculitis and more. Well, there you go. Perhaps we will find I have another year or so to enjoy my newly renovated home and my son, with fewer illnesses and pain. I pray so. One step... As I mentioned, I didn't expect to see 2026 celebrations!

You were blessed to see good results with your treatment. And to be off Prednisone for 5 years must feel great. Do you notice specific improvement in certain areas where side effects were more severe? Or is it a general overall improvement? And you continue to be PMR symptom free. There is hope...

Thanks for your clarity and explanations. You are a gift to us all...
Blessings, Elizabeth

@ess77, thank you for sharing your journey. My doctor and I have come to an understanding with a 2.5 mg taper every 2 to 3 weeks until I get down to 10 mg. Right now I am at 12.5 mg. I will let her know when I get about 3 days before the next 2 week taper if I feel I need another week. She tried very hard to get me to quick taper again but after trying it once I refused to do it again and I'm holding my ground. I've been on the prednisone since May, not very long as others have done this journey for years. Light exercise and walking help me. The humidity and also dampness knock me down. Its a new ride every day. I keep my seat belt and helmet close by these days, lol! I have a good thought every day for all of us that are suffering . Blessings to everyone

@carolneedham, Mike @dadcue, and all... This sounds wonderful for you. You sounds pleased and like it meets your wishes. That's a good thing! That often for me was the hardest part of this silly mess... getting enough legitimate information from my own 'research', from legitimate sources, and fro!, m foks like most here who are walking the same or have been walking the same road as you. I learned to respect several folks in particular who appeared to understand where I was coming from and perhaps experienced much the same as I... who gave me good guidance.

Then, I took a big breath, ha!, pulled up my bigger girl undies thanks to Prednisone! Ha!
And had clear chats with my doctors. When they realized I was becoming better informed and truly intended to be a partner with them, and expected the respect deserved, the relationship became a real partnership and we made progress.

There were several failures along the way. So, I did some praying and found another route, another avenue to get the help needed. My prayers were answered personally when I became a Mayo Jacksonville patient, frequent flyer for sure. They have, in most part, been on target, right there looking me in the eye dealing with my needs, treating me with care and respect.

For the most part. Not 100%, but my word! What a change in my life they made and are making! I am still living, seeing colors again, off so many horrid chemicals doing weird things to my body. Now, getting good chemicals, at least so far as we know now... and helping reduce some of the harm. Hopefully, giving me many more days of color and music.

Wishing you the same, building good relationships with your medical team...
Blessings, Elizabeth

@carolneedham
I had PMR 6 years ago and went to the Rheumatology department at UAB. They had me taper off of prednisone by 1 mg per Month. Taper slowly so your body can adjust and start working on its own again. After 12 months I was at 0 mg prednisone and I have had no PMR symptoms since then.