Weight based prednisone dosing

@diegory

My 50# weight gain was probably within the first 5 years of starting Prednisone for PMR. I was still reasonably active during this time. I complained of "exercise intolerance" within a year but that was because of being short of breath while doing 50 mile bicycle rides. I had an exercise tolerance test done and it was interpreted as "normal." My PCP wanted me to have a pulmonary function test but I declined that test since my exercise tolerance was normal.

I continued to gain weight while exercising until I hit the proverbial wall while doing one of my bicycle rides. I informed my PCP about an irregular pulse and "skipped beats" which warranted an EKG.

The EKG detected left ventricular hypertrophy (LVH). My blood pressure was normal at the time of the EKG but my PCP wanted me to check it more often. Within a week, I was in the emergency room with a blood pressure reading of 210/110. I started 3 medications to control my blood pressure.

Five years after I started prednisone, I was unable to exercise because of being chronically short of breath. I didn't think I was more short of breath when someone urged me to go to the urgent care center because I didn't look well. I was perturbed when an ambulance was called to take me to the emergency room. I would have run away but that was impossible with multiple and bilateral pulmonary embolisms. This pulmonary event was described as "massive." I didn't suspect prednisone until the intensive care doctors were outside my room speculated about what caused such a massive and "unprovoked" event. There was a lot of whispering but I heard the word "prednisone" being mentioned frequently,

I just looked at the time frame of my weight gain. I started prednisone daily for PMR in 2009. My weight increased by 40# within the first 3 years. All the cardiovascular issues were within the first 5 years. My increased weight peaked at 50# and stabilized. I told a doctor once that I didn't think it was humanly possible to gain that much weight even when I said that I stopped eating. I exaggerated but it was generally true because I made a conscious effort to not eat when I was gained so much weight.

My comorbidity list increased every year I was on Prednisone. Since getting off prednisone 5 years ago, I have lost 30 pounds. All my blood pressure medications were discontinued gradually after prednisone was discontinued along with about 5 other medication that were either treating a prednisone side effect or were prescribed to prevent a prednisone side effect.

I now try to aquacise as much as I can but a bicycle ride like I used to do is out of the question. I have rode a bike around a few blocks in my neighborhood. I was elated when I discovered that I could still swim a few laps without stopping in the big swimming pool and without having the fear of drowning.

I encountered many problems when I tried to taper off prednisone. Ultimately I was referred to an endocrinologist who determined that I had adrenal insufficiency and metabolic syndrome from long term prednisone use. I was told that it would take a long time to reverse these problems and some things might be irreversible. I'm still seeing an endocrinologist almost as often as my rheumatologist.

I took my last dose of prednisone about 5 years ago after a biologic was tried. It still took me 2 years after the biologic was started before I could taper off Prednisone completely. My comorbidity list has seen steady improvement since discontinuing prednisone except now I might have neuroendocrine tumor. This type of cancer is slow growing, unconfirmed and I'm asymptomatic. I'm worried they might have to stop the biologic I'm on.

@dadcue I was in the ER all day yesterday. I had an MRI done of my whole spine. This is the second emergency visit to the ER for me in one year for spine related issues. I'm not sure what's wrong with me possibly a whole body neuropathic flare-up. I went because I was having all of the symptoms of cauda equina syndrome. They gave me 2 weeks of prednisone. 60 mg for the first 5 days then taper off of it.

First, welcome to the world of "It doesn't make sense". Being a doctor one would think that the mysteries of PMR could be better understood by a medically trained professional. As you realize PMR is not understood by the medical professionals tasked with treating it, however the treatment has become much more "standardized" in the seven years PMR has been my constant companion.

My understanding of the standard school of thought now is after initial treatment to gain control of the pain that the taper to 20mg should be swift. If more than 20mg of prednisone is needed to control pain, then likely PMR is not the only player being treated. Once 20 mg is reached then real tapering begins. Tapering to 10 mg is often done at 2.5mg rates per month, then starting at 10 it is most often done at 1mg/month as long as pain does not return.

You are in the below 20 taper heading to 10 and have hit the pain wall at 15. From what you told us, you are pain controlled at 20, but for now cannot get below 15. With the addition of biologics I am not sure how this changes the taper expectations, but I am sure it does. Discuss this with your Rheumy and see where he lands. There is no single correct answer, but at some point I would suggest you request additional testing to see if a non-ANCA vasculitis is also in the picture. Remember, PMR is a default Dx and to date there is no test that can be ordered to confirm the Dx. The best they can do is test to eliminate other causes. I would not want to be a Rheumy.

Long story, but I requested vasculitis testing in 2023 and they only ran ANCA blood work that was negative. Three years later asymptomatic GCA Vasculitis was Dx and damage to my aorta is real. I could successfully taper to 0 but the inflammatory markers would begin to go back up with a vengeance almost immediately. This cycle repeated itself with every taper.

@diegory

That brings back a lot of memories for me. I have severe lumbar stenosis found during an emergency CT-scan about 10 years ago. I was on prednisone but apparently my dose wasn't high enough. I took more like 100 mg of prednisone when I was confronted with the possibility of an emergency lumbar fusion.

The spine surgeon was reluctant to do surgery because of all the Prednisone I had been on. He wanted a bone scan done first to see if there was enough good dense bone in my spine to hold all the hardware that would fuse my spine. The surgeon said I was NOT a good surgical candidate because of being on Prednisone.

After the bone scan, I needed an EMG/NCS just do "delineate the damage" to my spinal nerves before surgery. I didn't have caudal equina symtoms that time but that happened a few years later. The first time I learned about my spinal stenosis because I didn't know that I had a bad back. I had problems with foot drop and radiating leg pain that was so severe I would have signed a consent to amputate my leg. I was dragging one leg when I walked into the emergency room.

In any case, my rheumatologist wasn't so happy that I took so much Prednisone. She said a localized steroid injection would have been a better choice than systemic oral prednisone. She was glad the pain stopped though. The EMG/NCS showed that the damage wasn't so severe to need emergency surgery so did physical therapy instead of the surgery.

@dadcue I have had my spine MRI three times in the last year, 2 were emergency MRIs.

Although the MRI that I had done this week reads the same as my original MRI from a year ago, I feel completely different at times.

I don't know what's going on this time I guess it's just a flare up.

I am very physically active and still participate in full contact Sports on an almost daily basis. I did take a couple Falls in the two weeks prior to going to the ER which were for me very minor Falls but they could have provoked whatever is happening.

I have had three appointments with a spine surgeon He has been pressing me for a year now to do a Fusion with Hardware. I have never taken him up on it because every time I had appointments with him I was feeling fine, but I think after this last incident I'm going to probably commit to it.

I've tried everything and anything short of surgery and have spent so much money trying to sustain living with my spine the way it is. The MRI also showed that I have bad scoliosis which I was never aware of.

@diegory I am going to suggest you request being referred to Physical Therapy for 4-6 weeks to see if it can make a difference. Even if it doesn't help in the short term it will be good to be in better condition prior to your back surgery, so I would see it as a no-fault action for you. If it does help, then that might buy you some time to make a better-informed decision. Unfortunately, back surgery has mixed reviews, for those it helps they consider it a miracle, for the others they wish they never had been offered it. Talk to your surgeon about the failure to provide relief stats. Success is the expected outcome, the unexpected outcome is what you need to brace for.
Just so you know I have fully recovered from bilateral rotator cuff surgery, with full range of motion in both shoulders. Recovery was a job not a hobby, required commitment to the ordered PT, no exceptions.

@diegory I am going to suggest you request being referred to Physical Therapy for 4-6 weeks to see if it can make a difference. Even if it doesn't help in the short term it will be good to be in better condition prior to your back surgery, so I would see it as a no-fault action for you. If it does help, then that might buy you some time to make a better-informed decision. Unfortunately, back surgery has mixed reviews, for those it helps they consider it a miracle, for the others they wish they never had been offered it. Talk to your surgeon about the failure to provide relief stats. Success is the expected outcome, the unexpected outcome is what you need to brace for.
Just so you know I have fully recovered from bilateral rotator cuff surgery, with full range of motion in both shoulders. Recovery was a job not a hobby, required commitment to the ordered PT, no exceptions.