Advice/experience about going back on Prednisone

Posted by bitsygirl @bitsygirl, Jan 22 2:50pm

I was diagnosed with PMR in December 2022. I did a short course of prednisone (3 weeks?) if I recall correctly and it helped, but it did not go away. I was referred to a rheumatologist but couldn't get an appointment until Sep. 2023. It got slowly better over that time. Rheumatologist put me on a short course again (10mg for a couple of weeks) and started working at another facility. Today (four months later) the new rheumatologist wants to put me on an extended regimen of 3 weeks each of 10mg, 9mg, 8mg, .... down to 1mg I guess. The pain now is completely livable. I have to be careful putting a shirt or jacket on and turning over in bed at night. Riding a bike requires periodic breaks, but I can ride and lift weights as I like more or less. I have been thinking it might be getting slightly worse and my ESR has gone up by a couple of points between meeting with the rheumatologists. But again, annoying but completely livable.

To finally get to the point, I am wondering if its a good idea to go on the predisone. I've read about people who can't get off it, and I'm wondering whether taking another round might create some kind of dynamic that makes it hard to get off later on. Is this crazy? Can it possibly make the PMR worse when I don't take predisone?

I asked my rheumatologist and she said no. I'd just feel better to hear the experience of anyone out there who has gone through something similar. I'm finding the decision difficult.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

rtuna | @rtuna | Jan 29 6:49am

In reply to @prestol "I am newly diagnosed and am on 20 mg of prednisone, which has been very effective...." + (show)

Methotrexate has helped with the tapering of prednisone for me. 15mg once a week. Now at 7.5 prednisone.

seniormed | @seniormed | Jan 29 7:36am

PMR is unpredictable though usually manageable with prednisone. Treatment depends on severity of symptoms, other health conditions, age, activity and your circumstances in general.
I felt I had some control over prednisone side effects
and dose required by anti-inflammatory diet choices
controlling weight and metabolism concerns. Work on moderate exercise and walking. Have your home BP
monitor and you can learn to use a glucose meter at
home. I also took my meds with meals and used calcium
antacids at night. You can ask your doctors to check A1c
when you have follow ups. I took turmeric and D3 and still maintain my good habits. I researched adrenal side effects and decided to try DHEA otc low dose with very slow taper off steroids. Ocuvite and sunglasses always a good thought. My biggest complaint is thinning of the
skin and bruising in my 70’s. Wear sun protection as a routine. Doses below 10 mg can be well tolerated if
your lifestyle and access to medical care allow.
Hope your active interest keeps you doing all the activities you enjoy.

prestol | @prestol | Jan 29 8:51am

In reply to @rtuna "Methotrexate has helped with the tapering of prednisone for me. 15mg once a week. Now at..." + (show)

Thanks, I intend to ask my pcp about methotrexate. Not seeing a rheumatologist for a month.

prestol | @prestol | Jan 29 9:00am

In reply to @seniormed "PMR is unpredictable though usually manageable with prednisone. Treatment depends on severity of symptoms, other health..." + (show)

Really helpful, thanks. I am already taking calcium, D3 and turmeric. My situation is complicated because I also have Crohn’s disease, which thankfully is in remission on inflixamab. But…inflixamab is not helpful for PMR. There is always room for improvement with diet and exercise. I will make sure my a1c is closely monitored. After five days on prednisone, I already have insomnia, but I can live with that because I have lots of energy (haha)!

DadCue | @dadcue | Jan 29 9:17am

In reply to @prestol "Really helpful, thanks. I am already taking calcium, D3 and turmeric. My situation is complicated because..." + (show)

How much prednisone are you taking with the infliximab? I assume Crohn's was diagnosed first and then PMR.

I was diagnosed with reactive arthritis at age 32 and PMR at age 52. Are you aware of the diagnosis of spondyloarthritis? "Enteropathic arthritis associated with inflammatory bowel disease, such as Crohn’s disease and ulcerative colitis, are types of spondyloarthritis."

https://rheumatology.org/patients/spondyloarthritis

prestol | @prestol | Jan 29 9:35am

In reply to @dadcue "How much prednisone are you taking with the infliximab? I assume Crohn's was diagnosed first and..." + (show)

I started on 15 mg and after three days it was increased to 20 mg. I am on day six. I have had Crohn’s for 12 years. This summer I developed lower back pain and an MRI revealed severe osteoarthritis, stenosis, etc. I saw a neurosurgeon who didn’t suspect ankylosing spondylosis. But, we’ll see what the rheumatologist has to say.

DadCue | @dadcue | Jan 29 11:22am

In reply to @prestol "I started on 15 mg and after three days it was increased to 20 mg. I..." + (show)

Welcome to the forum. Lots of inflammation here. I'm sure other people will be interested in your combination of PMR and Crohn's.

Sounds like we have the same lower back problems and pain. My rheumatologist doesn't see any evidence of ankylosing spondylosis (AS) but plenty of evidence of generalized inflammatory arthritis along with PMR. There is an entire family of spondyloarthritis types. Ankylosing spondylitis (AS) is only one type.
https://spondylitis.org/spondylitis-plus/an-updated-overview-of-spondyloarthritis-a-family-of-related-diseases/
Good luck with keeping your prednisone dose lower and eventually getting off prednisone again. It took 40 mg of prednisone initially and 13 years for me to get off prednisone after PMR was diagnosed. That was in addition to 15 years of intermittent high dose prednisone bursts to control flares of reactive arthritis and uveitis before PMR was diagnosed. PMR made a bad situation even worse and can coexist with spondyloarthritis.

A neurosurgeon says my entire lumbar spine is a mess and wants to remove much of it and fuse it all surgically.

prestol | @prestol | Jan 29 4:41pm

In reply to @dadcue "Welcome to the forum. Lots of inflammation here. I'm sure other people will be interested in..." + (show)

Thanks for the links you sent about the many types of spondyloarthritis. This topic is new to me and I have a lot to learn. Good luck on avoiding spinal fusion surgery, which is also my goal. I was just able to schedule with a rheumatologist this week instead of one month out, so hopefully will be getting some answers to my many concerns about prednisone.

DadCue | @dadcue | Jan 29 6:52pm

In reply to @prestol "Thanks for the links you sent about the many types of spondyloarthritis. This topic is new..." + (show)

Keep us posted about your rheumatology visit. What is said might be interesting since you have already been diagnosed with Crohn's.

PMR usually requires treatment with prednisone for 1-3 years. I think prednisone used for flares of Crohn's is generally only for a few months. When you have more than one autoimmune disorder, all bets are off.

I hope your visit goes well.

rocjr1 | @rocjr1 | Jan 29 8:24pm

Given that your symptoms are currently manageable/liveable, I wonder if it makes more sense to start on a lower dose of prednisone? I’d ask your doctor about that and whether trying 4 or 5 mgs (just for example) a day would be a good compromise given your concerns.