I’m Not Responding to Prednisone and I Need Advice

My issue is not weight related but that I am post polio. Another condition with little information and almost no doctors/specialists to treat it.
I had polio at age 15. In the years following I became hypersensitive to medications often having side effects from pediatric doses. I became allergic to antibiotics. Little did I know I should not have had the Shingrix vaccine.
Currently I’m at 5mg of prednisone and had problems at 4mg. I suspect that being post polio this low dose is more harmful to my body than others experience. But I have no choice.

I’ve had PMR and still have GCA. It’s going on 11 years now. I have been up and down with the prednisone. The 30 mg might not be enough, it usually is but in some cases you might need another five if you catch it right away usually 20 works. Try going up another five and see what happens and stay on that for a while if it works.

Do you need a new rheumatologist. Whatever those takes away the pain and fatigue is the right dose for you for me. It was 30 and I stayed on that for a while. Reductions have to be real slow and you need to stay an introduction for a while too. The longer you have pain and you are not on the proper dose of steroids the longer it takes to get you better. I had a great doctor in New Jersey and when I move to Florida, it is taking me 10 years to find a Rheumatologist that understands GCA.

I'm hypersensitive to atorvastatin. My cholesterol level is too low when I take a normal dose. My cholesterol level is too high if I don't take any atorvastatin.

My CK level is always higher than normal and my rheumatologist stops atorvastatin because my cholesterol level is too low and is concerned about statin induced myopathy. My primary care doctor restarts atorvastatin when my cholesterol level gets high again.
https://www.testing.com/tests/creatine-kinase-ck/
The compromise now is to take the lowest atorvastin dose available, break it in half, and take half a pill every other day.

My CK level was still high the last time it was checked. The CK level problem was solved by not checking my CK level anymore.

The way medications interact with each other can really cause havoc for some people. Our bodies are nothing more than chemical elements mixed together in different proportions just to make us all different.

@joybannister Hello Joy - I am 66 yr old woman , living in Boston. My doctors are are part of Mass general Hospital /partners. I was bumped up to 30 mg/day by the rheumatologist after after a terrible flare up !! my PCP would NOT go above 15mg/day. Luckily i found a rheumatologist appointment within one month of first diagnosis( April 2023) . the TAPER schedule was as follows -- taper down by 2.5 mg/ week until i reached 10 mg/day ( at 15mg/day i was going on vacation so i stayed at 15mg for 2 weeks ) - then reduce by 1 mg/MONTH ( about 28 days) . To note- i have include the strategy of introducing the next lower dose throughout the month . i will attach a reference to it ( mentioned first by @johnbishop ) ; i still split teh dose. I have had NO morning pain or stiffness in either the shoulders or hip girdle since the 30 mg-MIRACLE dose ! I was going to PT in the pool for my knee and still do those exercises. i walk and garden and drive to work 3 days a week. However in mid May and all of June i took Medical Leave -fearing a relapse . hope this info is useful to you -- nyxygirl

Thanks so much for the information. I really feel like I'm on my own. My first rheumy wouldn't go above 15mg even though I had terrible pain, and the second only bumped me up to 17.5. I went rogue and put myself on 25 (not quite pain free but better). When you split the dose what time did you take the second dose?

From my experience and knowledge prednisone is a quick acting anti inflammatory medication.. AND not suppose to stay on high dosage for long period of time as of bad size effects to tur body ..
from my knowledge ( I’ve been on prednisone a few times for very painful costrachrinditis in rib and through chest wall)
But drs are generally wary prescribing this drug and only allow you to be on your dosage relatively short term..
I think if it’s really not helping you n making much of a difference u need to WEAN off of it..

I take half does at 9 am and the other half at 9 pm.

I had been taking 20 mg of Prednisone per day, but I still had a lot of pain. For some reason my doctor added a maximum dose of Tylenol. Also I've been taking Allopurinol for the last 20 years, and I'm beginning to wonder whether I need to continue taking that.

Last week I increased my Prednisone dosage from 20 mg per day to 30 and cut my Tylenol and Allopurinol intake in half. My situation is much improved. I think I need to increase my Prednisone dosage another 5 mg. Once I can get the pain under control, I'll be glad to begin the weaning process.

I'm running low on Prednisone, so tomorrow I'm going to ask my doctor for a refill. If he refuses I'll be in trouble.

I have learned a lot from this forum. Thanks to all the posters and the Mayo Clinic.

My doctor started me with 10mg - after 8 days with limited improvement, I still put a shirt on, and had to think about standing from a sitting position so he increased it to 15mg - again no real difference so - he put me on 50mg - it’s my 1 st day (Nov. 14) it took 4 hrs to kick in but it has put as close to normal as I could expect - still have to see when it will leave, hopefully through the night.
If you research it you will find PMR severity can differ from person to person - I have a severe case you may also have a severe case.