2 year struggle to get off prednisone still hard to get from 3 to 2mg

Thanks for your response, no obvious cause other than I had a hip replacement about 16 months before diagnosis and had been through a very stressful time, like you I find heat helps and i have a heat pad for my shoulders and one for my lower back
Despite making changes to diet in terms of more protein and vegetables i didn't really find anything made much difference to managing the side effects except gritting my teeth and knowing I would struggle for 7-10 days every time I reduce
My face has retunred to pretty much normal my appearance had changed considerably and I still have weight to lose but appreciate this will take time as i reduce to nothing.
I live in Aotearoa New Zealand

It's hard to forgive them for that, isn't it? How much time would it have cost them (probably paid for by your ins.) to make sure you understood what was needed, and the dangers. No one told me Prednisone usually makes women gain significant amounts of weight. My PCP did not even one time mention my weight gains to me, the whole time. That's what broke my feet. After steroid use softened my bones. Another side effect I wasn't aware of. I ended up with Glaucoma in both eyes. It was my Eye doctor who got in my face about the risks I was playing with. She saved my sight. I still live with periodic laser surgeries to keep my eye sight from going. All, known risks of Prednisone. We didn't have Internet in our home. It was Alaska.

@victoriab

The overwhelming fatigue is likely a symptom of adrenal insufficiency and a low cortisol level. This is also a side effect of long term prednisone use and this condition surfaces when we get to lower doses of Prednisone. For me, adrenal suppression was an unpleasant surprise when I got to 3 mg of Prednisone after my long term Prednisone use.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10257969/
"Conclusions:
Oral glucocorticoids, when given for long periods, put patients at risk of developing secondary adrenal insufficiency due to suppression of the HPA axis. The prevalence of long-term oral glucocorticoid use is 1% in the general population and increases with age and among women. The absolute risk of having adrenal insufficiency in patients taking oral glucocorticoids is 48.7%"

I was actually told not to taper any lower than 3 mg until my cortisol level improved. It can take years for your adrenal function to improve and this only happens at very low doses and more so when Prednisone is discontinued. However, you can't discontinue Prednisone until your adrenals produce adequate amounts of cortisol. It can take many months for your adrenal function to improve enough so that your cortisol level increases.

Cortisol is what regulates inflammation in the body and is produced in the adrenal glands. Prednisone shuts down your adrenal function and replaces the cortisol when a synthetic corticosteroid. Your adrenals need to start working again or you need to continue taking Prednisone.
https://www.webmd.com/a-to-z-guides/what-is-cortisol

If it is any consolation ... Prednisone makes men gain significant amounts of weight too.

Prednisone can also soften the bones in males but not to the extent that women have this problem. Women are predisposed to osteoporosis more than men so Prednisone is worse for women in this regard.

I'm sorry you had all those side effects. My eyes had premature cataract formation and lens replacement surgery at the age of 45. Now I have glaucoma as well. On the other hand, I still have my eyesight so Prednisone probably prevented me from being blind.

Generally everything, including my quality of life, has improved since I was able to discontinue Prednisone.

I am an 83 year old male, always healthy, not quite done fighting off whatever we call this stuff for 4 years now. When my front body muscles all wanted to kill each other at Christmas 2020, nobody in Florida had a clue and I lost 25 pounds. I accidentally found a pickleball friend in upstate Michigan had gotten the same stuff but wasn't sick anymore and he said: "It is PMR". My old heart/general family doc had heard of PMR, and she said she saw two cases a year. // Previously in 2008, I had a "CABGX5" after I passed out 30,000 feet over Dallas- not much damage, no real problem in recovery: I have been playing uniformed softball with my geezers for 9 years//. My temporal artery biopsy operation showed no giant cell artheritis but my body muscles continued fighting each other, meanwhile COVID hovered and defeated my masks once and not bad because of my Pfizer shots. Also about half of my softball geezers got pink feet with painful swollen toes last winter!! I had cut my use of Prednisone, initially 20 mg, quickly reduced to 10mg, then slowly to 5, and finally down by 1 mg per day over time, until I was off this steroid. I was on steroids with PMR FOR APPROXIMATELY THREE YEARS. My chest muscles are still way weaker than normal, (rt. rotator cuff still damaged= be careful). but the steroids are done!! Also I ride a bike hard for 20 min/day. All pain has gone way down. My lovely wife has read this, and mentions she has heard of people getting PMR relapses for various reasons. Signed, Geezer after PMR.

Welcome @daveycarls, That's great to hear that you have gotten off of the steroids for PMR. I'm 81 now and have had 2 occurrences of PMR. My first one lasted 3 and half years before I could taper off of prednisone then it came back 6 years later and I was able to get off of prednisone in 1 and half years. Knock on wood, I have been PMR free now for 6+ years but not without some of the old guy pain from my degenerative arthritis in my joints and spine. Still I'm feeling lucky the PMR hasn't come back.

Have you made any changes in your diet to help keep the PMR at bay?

Hello, I live in the UK and have pmr. You may find these tapers a little more manageable than alternating days. The first one is 5 weeks and the second one is 7 weeks. In the UK our prednisolone (your prednisone) is not usually coated so we can cut the tablets in half. I think all prednisone is coated so unable to cut. If you can cut your tablets try and reduce by half an mg at a time instead of one mg. Tapers below. In the UK we try not to taper more than 10% of dose when under 10mg.
You can repeat any week if you feel it is getting a bit of a struggle.
TAPER (5 weeks);
Week 1 -
Sun, Thurs new dose –Mon, Tues, Wed, Fri, Sat old dose
Week 2 -
Sun, Tues, Thurs new dose -Mon, Wed, Fri, Sat old dose
Week 3 -
Sun, Tues, Wed, Thurs new dose -Mon, Fri, Sat old dose
Week 4-
Sun, Tues, Wed, Thurs, Sat new dose -Mon, Fri old dose
Week 5 -
Every day new dose
SLIGHTLY LONGER TAPER (7 weeks)
Week 1 -
Sun - new dose – Mon to Sat old dose
Week 2 -
Sun, Thurs new dose -Mon, Tues, Wed, Fri, Sat old dose
Week 3-
Sun, Tues, Thurs new dose -Mon, Wed, Fri, Sat old dose
Week 4 -
Sun, Tues, Wed, Thurs new dose -Mon, Fri, Sat old dose
Week 5 -
Sun, Tues, Wed, Thurs, Fri new dose - Mon, Sat old dose
Week 6 -
Sun to Fri inclusive new dose
- Sat old dose
Week 7 -
Every day new dose

Thank-you for sharing this information. It is always interesting how other countries treat their medical conditions.

In the USA, prednisone tablets actually come in two forms. One is the more common form — a "regular" immediate-release form that can be split or cut in half but it is tedious because the tablets are small. There is also a delayed-release formulation, called Rayos. Prednisone and Rayos are the same medication, but Rayos is designed to start working 4 hours after you take it. Rayos is the coated form of Prednisone that can't be divided.

I doubt anyone in the USA is allowed to have Rayos except possibly for rare circumstances. Insurance companies say it is too expensive and not medically necessary so they won't pay for it.

I'm always curious whether or not there is any medical research that supports a tapering plan like you suggest. There are many tapering strategies but no research that supports one strategy more than another. Whether one strategy works better than another is purely subjective. I think doctors in the USA would support it if there was evidence this tapering strategy works. Do doctors in the UK actually prescribe prednisolone that way?

I tried every tapering plan I could think of after PMR was diagnosed. I failed miserably for more than 12 years. It was hard on my ego not to be able to taper off prednisone quickly. I was able to successfully taper off Prednisone countless times during the 20 years before I was diagnosed with PMR. I was able to taper off Prednisone quickly when treated for a different autoimmune condition called uveitis which can also lead to blindness. A 100 mg to zero Prednisone taper in a month or two was never a problem. Granted that was to treat another autoimmune condition that was more "responsive" to prednisone and went into remission quickly. My ophthalmologist praised me for being "skilled with prednisone tapers."

In my opinion, the "pain symptoms of PMR" respond to prednisone but the "PMR condition" does not. I base this opinion on being able to taper off prednisone very quickly after a biologic was tried. PMR actually responded well to the biologic so I don't take prednisone anymore. My condition has improved dramatically! Once my PMR condition was targeted and treated ... then I was able to taper off Prednisone relatively quickly which is what my rheumatologist wanted to happen. Prednnisone is not recommended for long term use because of the known serious side effects that most patients experience sooner or later.

Thank you for your reply, you raise some interesting points. I fully agree with your' statement 'In my opinion, the "pain symptoms of PMR" respond to prednisone but the "PMR condition" does not.
The taper plans that most pmr patients use in the UK are the result of years of trial and error by patients. The ones I quoted are just two of a number that seem to work well for a majority of people. Doctors in the UK follow government guidelines on drug availability to prescribe. The standard for pmr is prednisolone, 15mg for 4 weeks, 12.5 for 4 weeks then reducing 1mg every month. I have never heard of anyone achieving that reduction. A large percentage of our Doctors think that pmr goes into remission in 2 years, I think that is what they are taught when training. After saying that, many Doctors here are ok with the patient reducing as tolerated without the time element.
Biologics are expensive in the UK so are generally not available on the National Health Service, apart from patients with rheumatoid arthritis. I assume some private patients could access them.
Many years ago I came across a patent in China for a herbal remedy for pmr. The research paper was based on just under 100 patients. 94% were in remission after one year without relapses, the other 6% took a little longer.
Good to hear that you are now in a pmr free zone, enjoy !

There is an abundance of 'trial and error' when treating any medical condition. No two people are the same so what works for one may not work for someone else.

I don't know for sure if I'm "PMR free" or not. I have been "prednisone free" for almost three years. I still take the biologic and I'm "relatively pain free" and "PMR condition free" until the biologic is stopped. According to my rheumatologist, PMR goes into remission and the pain is relieved but my PMR condition still exists. He thinks my immune system has been attacking me for a very long time. A characteristic of the adaptive immune system is to "remember" what it attacks. My rheumatologist doesn't think my immune system will "forget" anytime soon what it has been attacking for many years.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4067599/
I wish someone would debunk this idea for me.

Prednisone never helped my overall condition but it did quickly relieve much of the pain. That is how Prednisone is deceptive because it doesn't change the overall course of the condition if you need to wait for PMR to "burn itself out."

My rheumatologist is reluctant to stop the biologic again because my condition worsens. I wouldn't say I have PMR relapses but my condition deteriorates and I need to go back on prednisone again temporarily. When the biologic is restarted it takes time to work. There isn't the immediate gratification of pain relief like prednisone provides which is deceiving in my opinion. People are not well if they need to take prednisone every day! Symptomatic relief and waiting for the PMR condition to burn itself out is not good enough. The waiting and the long term side effects from prednisone is a recipe for disaster in my opinion.

The biologic takes a few weeks to work. I currently do a monthly infusion which is nice because I don't worry anymore about how much prednisone to take each and every day. That is what "prednisone free' means to me. I don't want to take long term prednisone again but I will if it is necessary for a short period of time. My slow motion relapses don't happen instantly like when my prednisone dose got too low which often happened overnight. I don't feel like the biologic fails when it is stopped. When my condition deteriorates and the pain becomes more than I can tolerate, prednisone is restarted. I only take 15-20 mg of prednisone for a short period of time. Fortunately my condition dramatically improves again when the biologic is restarted. I then taper off prednisone again in a couple of weeks. This was a 'trial and error' approach to see if the biologic could be stopped. However, one interruption was a supply chain problem during Covid when the biologic was not available. The biologic can easily be stopped unlike prednisone when people become dependent on it.
https://www.medicinenet.com/steroid_withdrawal/article.htm
My rheumatologist had two goals when he sought approval for the biologic. The way the request was was worded --- "all other alternatives failed" (notably methotrexate and leflunomide and a few other steroid sparing medications) AND "inability to taper off prednisone." My rheumaologist's first goal was PMR remission and the second goal was to get me off prednisone.