It’s all going pear shaped

my rheumatologist told me that in some patients the markers are normal but all the signs you mentioned are there , so obviously your inflammation is high but not showing.

I have PMR but for some months now I was re diagnosed with rheumatoid arthritis in every joint, they found this through a full body scan since then, I have been prescribed different meds and at the same time tapering of pred, everytime I go under 10 mg I have the same occurances as you.

I don't know what you can do , your Rheumy should be looking further.

Sorry I couldn't help.

What should you do? Find a doctor who is realistic about reduction! Honestly - when it looks like a duck, walks like a duck and quacks like a duck - isn't it more likely to be a duck than a chicken? If he is so insistent it is OA causing your problems (which I doubt) then he should be willing to send you for x-rays to prove it. Because if it is this bad after a couple of years of PMR then it may mean you need a hip replacement in the foreseeable future 😉 ... (not serious, but I'm sure you see what I'm getting at)

The median duration of PMR is 5.9 years.

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1

only half of patients are off pred in 5 years and just over a third at 2 years. You aren't unusual.

The guidelines for reductions probably do say 1mg at a time - but they also almost all say at some point that the reduction must be adjusted/modified in line with the individual patient's needs and symptoms. Isn't it funny how guidelines are twisted to suit them - "I don't have to follow them because they are only guidelines..." or "I must do this - it's the guidelines...".

What on earth do they expect a mere human to do about "speeding up the reduction"? PMR is a self-limiting disorder yes - but it lasts as long as it lasts and management is required for the entire time. There are several factors involved in dose level - not least the bioavailablility of pred, anything from 50% to 90% of the oral dose may be absorbed. If you are a "50% person" you will apparently need a higher dose than the person absorbs 90%. That doesn't mean you should reduce to a dose that doesn't manage the symptoms.

In some patients the markers don't rise again while they are taking any pred - no-one knows why, it is so and the symptoms are always king. It is possible though that you have what I call PMR plus - your back muscles may be tight and spasming causing the pain. This may be due to myofascial pain syndrome or it may simply be due to the fact you are walking badly because of the PMR and that is putting strain on your back muscles. You may also have bursitis in shoulders and hips - actually part of PMR quite often - and that can make walking very painful and may mimic OA in your hips. Often these are all helped some at higher doses of pred but return as the dose is reduced.

Yes - I'd be seeking a doctor who treats the patient and not the textbooks...

it is a real shame that the medical professional don't get this ! THEY CAUSE SO MUCH STRESS TO YOU LIKE YOU ARE MALINGERING Sorry for the caps! i am a medical professional and my family doc is just like yours

my guess is to try to find a doc that will trust you with your experience and be open to trust your research this forum helped me so much especially giving me the confidence to go slow ! i am at 6 1/2 now but he wants me off of it, I WILL continue with this ds method even if I NEED TO FIND a doc

sad fact of our medical system

you may need to talk with a new doc or NP UNTIL YOU FIND ONE that has a checked ego! Good luck

I am having the same experience when I reduce my prednisone to around 13.

So frustrated that I can't get lower and it's been two years !

Fortunately my rheumy is understanding and lets me reduce as I see fit.

Joan, I've been in the almost identical position with terrible hip pain and a diagnosis of osteoarthritis. The doctor persisted with this diagnosis even after X-Ray didn't validate it. She told me to walk through the pain even though it felt like spikes being driven into my hips. I did my own research and concluded it was bursitis;,found some exercises to do on the internet, and as recommended for bursitis rested when I felt pain, rather than walking through pain as the 'doctor' recommended.

I too struggle to get below 10 mg and I've been at this for almost 5 years reducing at no more than .5 mg for at least two of those years. I fear I'm one of the people the Eileen has described and I don't absorb the full dose of prednisone.

do you take the whole dose in the morning? my husband is down to 18 from 20 He takes 5 mg before bed and 13 in the morning this carries him through the day. We got that suggestion from this site and it works.

Hi joanne83529

Request an Ultrasound scan to check for shoulder bursitis it sounds as if you have it. It can affect top of your arms too. If it is positive for shoulder bursitis you can have cortisone injections into the shoulder to alleviate the pain for a while they last approx 6 -8 weeks. If it is shoulder bursitis it can lead to a bursitis infection whereby a red rash will appear after a while over the shoulder and will be hot to the touch. You could also end up having an operation to remove the fluid from the burser also remove the burser altogether. If your doctor, who does not show a very caring attitude, dismisses it go for a second opinion .....

If it is add ons, as Eileen suggests are possible, then a good physiotherapist could help. There is no point telling a patient to "walk through" extreme pain which isn't getting better. That seems uncaring at best, incompetent at worst. I did find that pred "cured" all my aches and pains at highest dose (15 mg) as I reduced some came back and physiotherapy and a therapy offered through my physiotherapist involving low intensity light has managed the "add ons" very well. I am fortunate I have partial coverage for physiotherapy but if you can only get a few treatments the therapist will give you exercises which will continue to help you even if you can't take advantage of other treatments they can offer.

you need to see a rheumatologist. ive been on Methotrexate for over 4 months now. my pmr is much better. down to 10 mg. of predisone. My inflammation factors are still high but not nearly as much as they were .