Am I on the right track!

[AltonBay]

On Thursday I had my monthly appointment with my Rheumie. At the time I had mild aches in my legs, hips, and neck. We both suspected it was due to my long dormant arthritis which has only recently resurfaced.Friday morning more pain and stiffness. I went for several walks thinking I might work out the kinks. No dice! Climbing stares was nearly impossible! Went to bed in more pain!

Today I got out of bed with intense pain and trouble walking. As I thought what was going on I realized the pains were all bilateral and decided this is probably a flair.

I am currently at 7mgs. I took 10mgs this morning and the pain and discomfort have lessened.

My uncertainty is in the steps to take from here and a concern for the adrenal glands and if this will interfere with their process.

Thanks for any advise you can share.

[SheffieldJane]

It sounds to me that you are in the grip of a proper flare. The advice is to return to the dose you were last comfortable at and rest there until things settle. When you are ready, do a really careful slow DSNS taper of half a mg at a time. This will give your Adrenal function time to recover. Good luck!

[enan-illuc]

AltonBay,

I had the same occurrence/symptoms at 7mg of Prednisone. My Rheumy advised me to increase the Prednisone by 5mg and it worked. I then tapered slowly back to 7mg. I am now at 5mg after about five months. I hope this helps.

[PMRpro Ambassador]

You aren't really at a stage that the adrenal glands will have picked up duties yet - another mg or so. But they are immaterial - if you need 8 or even 9mg to manage your PMR you need 8/9mg. PMR is the boss.

How long had you been at 7mg and how long at 8mg before that? And how are you so sure it was the long dormant arthritis that had resurfaced? And not the PMR waving at you?

However - you need 10mg for a bit longer - until all is quiet again.

[AltonBay in reply to PMRpro]

Thank you for the much needed assistance.

I had been on 7mg for 17 days and before that, the 8mg for 21 days. When I was at 9mgs I went back to 10mgs two times.

I did ask my doctor about the shortened tapper and she said it is flexible. I do now believe this is PMR pain and not the arthritis. In reviewing my log this morning, I now see that I have noted painful days often! In the future, I promise myself, to monitor my pain daily and to react sooner to my own "messages to self"!

Many thanks for the helpful guidance you share with us everyday!

[PMRpro Ambassador in reply to AltonBay]

You really need longer than 3 weeks on a new dose at this level. And preferably you should be reducing either over a longer period or in smaller steps - you are now dropping more than 10% of the current dose.

[AltonBay in reply to PMRpro]

I agree and will increase the timeline once the situation has settled.

[nuigini]

Not meaning to through a curve ball. Several weeks back I developed terrible bilateral hip pain and couldn't walk two blocks without feeling like spikes were being driven into my hips.

I've had hip pain off and on throughout my 4+ years of PMR, which I believed to be myofascial pain and was able to deal with it by sticking with a proper exercise routine. However, this pain was much worse and not quite the same. My current GP (without laying a hand on me) felt it was most likely arthritis (even though the x-ray was clear). The recommendation, treat it like arthritis and work through the pain, which should get better as I walked further...and again she tried to push bone sparing medication!

I decided to do my own research and low and behold my self diagnosis is bilateral trochanteric bursitis! Applying pressure to my trochanteric bursa produced a stabbing pain and my symptoms matched everything that I read. Self treatment has been regular Tylenol (paracetamol) Joint and Muscle , appropriate exercises, and reduced walking for now (directly opposite to doctor's recommendation). After two weeks I've had significant improvement. Fingers crossed it will continue.

I'm presently on a very slow reduction plan and in the process of dropping from 9.5 to 9 mg. Over the years I'm quite confident in my ability to distinguish my typical/unique PMR flare symptom from other many aches and pains of aging. While I could always be wrong, I always look for other causes and treatments before looking to PMR as the cause and increasing prednisone. So far so good.

The research also confirmed what PMRPro has said many times, bursitis is commonly found alongside PMR.

[PMRpro Ambassador in reply to nuigini]

WHY did she want to push bone sparing medication for a patient with arthritis?

[nuigini in reply to PMRpro]

Because of the last sentence in this radiologist report, which she requested.

"AP pelvis both hips:The pelvis appears intact. Femoral heads show normal shape and density. No acute fracture is demonstrated. Joint spaces are symmetrical, perhaps minimally narrowed bilaterally."

This, combined with a recent DEXA scan which actual showed no further degeneration from one 4 years ago caused her to conclude that the "perhaps" minimally narrowing may be evidence of developing osteoporosis.

FYI the DEXA scans showed Femur neck -2.3 and Femur Total -2.2 in 2014 and -2.2 and -2.0 in 2018) . I now have three different doctors pressing me to take bone sparing medication because of the 2018 reading. Still fighting it as I did in 2014 with three altogether different doctors!

[PMRpro Ambassador in reply to nuigini]

Er - I always thought the narrowing was due to loss of cartilage in OA. The comment also mentions normal density of the femoral head...

[nuigini in reply to PMRpro]

I know!!! It's so frustrating. I just commented to my hubby this morning, if I had taken every drug recommended in the past few years I'd be on sleeping pills, methotrexate, anti-depressants, and bone sparing medication. Can't imagine the mess I'd be in.

I'm managing just fine with prednisone and BP meds thank you very much, along with calcium, magnesium, vitamin D and K2 of course. And even though I was on mega levels of two BP meds while on high levels of prednisone, I'm now back on the low dose of Losartan I was on prior to prednisone.

[PMRCanada in reply to nuigini]

Good for you. Stand your ground. I think folks put so much into the expertise and direction from their physicians they put their health in jeopardy from taking so many medications (and their related side effects).

I too am on pred and (half original) dose bp meds, and take the same supplements as you.

My Rheumy is pushing for a diagnosis of seronegative inflammatory arthritis. She mentioned methotrexate at my second visit. I disagree, and concur with my GP who diagnosed me with PMR this past May. I will refuse methotrexate, period!

We are the experts in our own bodies and symptoms. They (should) have scientific expertise in this field. We need to be able to work collaboratively with our health care professionals.

It must be so exhausting to be combating those physicians. I’m sorry that you have to put precious energy, thought, and time into debating with them about one of your most valuable possessions....your health. Continue to listen to your gut and symptoms, you’re doing great!

[nuigini in reply to PMRCanada]

Thanks for your support and encouragement PMRCanada. 😎

[PMRCanada in reply to nuigini]

Of note, I also had a bone density scan in last month and my gp said it is good, no concerns. Went to orthopedic surgeon last week to review mri's of both knees and xray from earlier this year. Diagnosed with OA (osteoarthritis) based on cartilage degeneration and x-ray that showed narrowing on one side (one knee). If your dexascan was ok, perhaps the slight narrowing is due to OA NOT osteoporosis. Have you had and MRI of your knees? Mine confirmed the OA (and all types of meniscal tears and complete ACL tear - yikes). But it is was the x-ray that the surgeon focused on.

[nuigini in reply to PMRCanada]

I have minor OA in my knees, shoulders and thumbs, all diagnosed pre-PMR, so the narrowing could certainly be further OA. None of these areas of any notable concern to me of yet, except for my left knee giving me minor grief on occasion. Wearing a neoprene knee support for a few days clears it up in a few days.

[Baileyw06 in reply to nuigini]

I had the same symptoms,after I got on the right dose of Pred I still had severe pain in right hip and limped when I walked.My Dr did X-ray of the hip and they were normal.My Dr sent me an orthopedist and was diagnosed With Bursitis! He gave me a shot of cortazone and three days later it feels much better.Now we know it is not from PMR!

[PMRpro Ambassador in reply to Baileyw06]

But it IS partly due to PMR: bursitis is part of PMR but the imaging that would show it is rarely done. I beats me why doctors are incapable of diagnosing trochanteric bursitis without sending patients to orthopaedists - especially when the patient has a PMR diagnosis.

[Baileyw06 in reply to PMRpro]

What test showes the bursitis?

Thanks for the information.

[PMRpro Ambassador in reply to Baileyw06]

A clinical examination - but it seems many doctors have no idea about clinical skills these days.

orthoinfo.aaos.org/en/disea...

Imaging is more to rule out other causes of the symptoms.

[Baileyw06 in reply to PMRpro]

Thanks,I put the information on my desk top.😊

[nuigini]

Thanks for sharing. Glad you got relief quickly. I'm hoping to avoid the injections, but will go that route if what I'm doing doesn't do the trick.

[LindaB-66]

Hi AltonBay

I’m glad you’ve had so many helpful replies. The thing I picked up most from your email was “your MONTHLY Rheumie appointment”! You are so lucky to have such an attentive Rheumie. The only time I saw that rare creature was on my first referral and that was 3 years ago when she told me I’d be off the Preds in a year and be finished with PMR! I was also signed off from her on that same day unbeknown to me at the time! I’m now more or less self medicating and following the advice and experience of those on here! Good luck with everything!

[AltonBay]

Thanks for the note. She is going on Maternity leave soon and another doctor will fill in. I haven't given her a heads up on my current flare as I know, from past experiences, that she will want me back on track ASAP!

Right now I am enjoying feeling less pain than I have in some time!