1. < Polymyalgia Rheumatica (PMR)

Question about PMR in addition to other autoimmune disorders?

Posted by DadCue @dadcue, Jun 27, 2023

I understand that it is possible to have multiple autoimmune disorders. I'm wondering how many people have a dual diagnosis. I was diagnosed with reactive arthritis about 20 years before PMR was diagnosed.

There are several types of spondyloarthropathies and someone can have overlapping features of all of them. The following diagram explains it better than I can.

https://enthesis.info/pathology/spondyloarthropathies.html

I'm just wondering if anyone else has been diagnosed with multiple autoimmune problems.

My rheumatologist says it would be impossible to threat everything. Actemra was used to target PMR and it works well for me. My other autoimmune disorder(s) are usually treated with a TNF inhibitor. Humira is a TNF inhibitor but it didn't work that well for me.

My question is for people who have been diagnosed with multiple autoimmune problems. How was it decided which problem to treat given that different autoimmune problems are treated differently.

Were you given prednisone because it is more of a "all around" medication for inflammation? I don't think prednisone targets anything specifically. Prednisone targets inflammation regardless of the cause or the diagnosis.

PMR responds to prednisone but many other autoimmune problems respond to prednisone too. In my case, PMR wasn't the only problem. I'm not sure "isolated" PMR is very common given that so many other things cause inflammation.

This question could also apply to anyone who had their original diagnosis changed to something else. I'm wondering if your doctor ever considered the possibility of multiple autoimmune problems?

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

emo | @emo | Apr 6 1:35pm
In reply to @slf202mcinfo "Enthesitis & PMR In 2021, I began a vigorous but sensible walking program to counteract Covid..." + (show)
@slf202mcinfo

Enthesitis & PMR

In 2021, I began a vigorous but sensible walking program to counteract Covid related weight gain and inactivity. It was very successful emotionally and physically and I continued to enjoy walking 2-3 miles, 4-5 times a week with one 5-6 mile walk added many weeks. Based on my age, 75, bone density testing of osteoporotic, and a broken wrist from a fall during one of my walks, I began treatment with Fosamax in July 2022. I began to experience almost constant aches and pains in my legs, not debilitating but definitely more than just annoying. I attributed this to a side effect of Fosamax use. I decided on a “drug holiday” from Fosamax in July 2023. There was no improvement in the leg aches and pains so Fosamax was not the cause. Overuse is listed as one cause of enthesitis?

In April 2023, I experienced Achilles tendonitis in one leg which did prevent my walking activities. However, I recovered with only chiropractic care. The aches and pains in my legs continued and I described them this way, “it feels like my muscles/tendons or ligaments are coming away from the bone, like really bad shin splints”. I thought I needed more and better stretching. I now think this was actually enthetitis, cause being my continued walking?

By October 2023, I was experiencing PMR symptoms. I was diagnosed with PMR in January 2024 and am now being treated, 20 mg of Prednisone daily for 90 days, decreasing over next six months. I am functional although very stiff and achy.

Does my experience sound familiar to anyone else?
Is my treatment comprehensive and appropriate if I have both PMR and Enthesitis?

Jump to this post

Have you talked to your rheumatologist about your tendon pain? That’s not usually associated with PMR, but it’s not to say you can’t have PMR and another autoimmune condition, or have PMR with a regular tendon injury.

Enthesitis (inflammation of the tendon) can either be just that—usually an overuse injury, or it can be a symptom of many different autoimmune arthropathies.

It might be worth talking to your rheumatologist about it to rule out if it could be related to another condition. But it’s hard to tell because Achilles tendon injuries take a long time to heal. Even if it gets better, the tendon tissue tends to heal in a disorganized manner, which can cause pain to linger. There are specific exercises meant to realign the tissue.

(I know this because I have chronic tendinopthies related to an autoimmune arthritis and even after I got treatment it took a long time in PT).

The exercise prescribed for Achilles tendinopathy is eccentric heel drops: https://www.sportsinjuryclinic.net/sport-injuries/ankle-pain/achilles-pain/achilles-tendonitis-exercises#:~:text=Begin%20standing%20with%20one%20foot,every%20day%20for%2012%20weeks.

But the exercise is done differently if the pain is at the insertion point at the back of the heel only.

Hope that helps?

REPLY
nyxygirl | @nyxygirl | Apr 10 11:36am
In reply to @slf202mcinfo "Enthesitis & PMR In 2021, I began a vigorous but sensible walking program to counteract Covid..." + (show)
@slf202mcinfo

Enthesitis & PMR

In 2021, I began a vigorous but sensible walking program to counteract Covid related weight gain and inactivity. It was very successful emotionally and physically and I continued to enjoy walking 2-3 miles, 4-5 times a week with one 5-6 mile walk added many weeks. Based on my age, 75, bone density testing of osteoporotic, and a broken wrist from a fall during one of my walks, I began treatment with Fosamax in July 2022. I began to experience almost constant aches and pains in my legs, not debilitating but definitely more than just annoying. I attributed this to a side effect of Fosamax use. I decided on a “drug holiday” from Fosamax in July 2023. There was no improvement in the leg aches and pains so Fosamax was not the cause. Overuse is listed as one cause of enthesitis?

In April 2023, I experienced Achilles tendonitis in one leg which did prevent my walking activities. However, I recovered with only chiropractic care. The aches and pains in my legs continued and I described them this way, “it feels like my muscles/tendons or ligaments are coming away from the bone, like really bad shin splints”. I thought I needed more and better stretching. I now think this was actually enthetitis, cause being my continued walking?

By October 2023, I was experiencing PMR symptoms. I was diagnosed with PMR in January 2024 and am now being treated, 20 mg of Prednisone daily for 90 days, decreasing over next six months. I am functional although very stiff and achy.

Does my experience sound familiar to anyone else?
Is my treatment comprehensive and appropriate if I have both PMR and Enthesitis?

Jump to this post

"I began to experience almost constant aches and pains in my legs, not debilitating but definitely more than just annoying." “it feels like my muscles/tendons or ligaments are coming away from the bone, like really bad shin splints”. -- >>Hello @slf202mcinfo>> does this mean the pain is in the front of your calves ?

- I have been experiencing a searing pain very deep in my lateral right thigh. The onset coinciding with my PMR( ever since last spring) , so notably it is persisting throughout Prednisone dose as high as 30 mg until now ( tapered down to 3 mg/day) . My questions for you, if you don't mind, are 1) have you had any imaging done ? 2) can a pysiatiatrist or physical doctor /therapist "provoke' the pain by moving your leg around ? I saw my pysiatrist yesterday - that her is conclusion that the pain cannot be provoked , MRI imaging done in Nov. showed bursitis at top of femur- the pain is quite severe if she pushes on the area where the bursae is. I am trying to strengthen the gluteus medius.

20 mg of Prednisone daily for 90 days, decreasing over next six months>>> this regime of prednisone seems different from others on this forum who have described their schedules, i seem to recall a general step-down that quickly gets you to 10 mg/day , and then it will occur (much) more slowly*. -- Have you decreased your Prednisone dose yet ? How are you feeling today ? : )
* see attached table 3

Shared files

Brit J Clinical Pharma - 2020 - Baker - Is there a safe and effective way to wean patients off long%E2%80%90term glucocorticoids (Brit-J-Clinical-Pharma-2020-Baker-Is-there-a-safe-and-effective-way-to-wean-patients-off-longE28090term-glucocorticoids.pdf)

REPLY
2 replies
DadCue | @dadcue | Apr 10 12:58pm
In reply to @nyxygirl ""I began to experience almost constant aches and pains in my legs, not debilitating but definitely..." + (show)
@nyxygirl

"I began to experience almost constant aches and pains in my legs, not debilitating but definitely more than just annoying." “it feels like my muscles/tendons or ligaments are coming away from the bone, like really bad shin splints”. -- >>Hello @slf202mcinfo>> does this mean the pain is in the front of your calves ?

- I have been experiencing a searing pain very deep in my lateral right thigh. The onset coinciding with my PMR( ever since last spring) , so notably it is persisting throughout Prednisone dose as high as 30 mg until now ( tapered down to 3 mg/day) . My questions for you, if you don't mind, are 1) have you had any imaging done ? 2) can a pysiatiatrist or physical doctor /therapist "provoke' the pain by moving your leg around ? I saw my pysiatrist yesterday - that her is conclusion that the pain cannot be provoked , MRI imaging done in Nov. showed bursitis at top of femur- the pain is quite severe if she pushes on the area where the bursae is. I am trying to strengthen the gluteus medius.

20 mg of Prednisone daily for 90 days, decreasing over next six months>>> this regime of prednisone seems different from others on this forum who have described their schedules, i seem to recall a general step-down that quickly gets you to 10 mg/day , and then it will occur (much) more slowly*. -- Have you decreased your Prednisone dose yet ? How are you feeling today ? : )
* see attached table 3

Jump to this post

Thank-you for posting this reference. I will add it to my file. The highlighted paragraphs in the grey box at the beginning states why we must taper more slowly once physiological doses are reached. Physiological dose is generally estimated to be about 5 mg. Daily cortisol requirements vary greatly depending on many factors related to stress but 10 mg of prednisone should be adequate cover for most days.

REPLY
menetski4 | @menetski4 | Apr 10 2:18pm

Sometimes I think we miss the forest for the trees. Everyone's case seems to be different. I think what we should all work on daily is the terrain. Make sure we have the best health practices that we can to give our bodies the best chance to heal. We need to make sure that we optimize: Sleep, Stress, Movement, Relationships and a Useful Purposeless, and Nutrition. I know, for one, that I constantly have to work on a practice of gratitude to reduce stress that otherwise accompanies these conditions (PMR, Non-ankylosing spondylo-arthropathy, and MGUS, for me). It is easy for me to go down the path of negative thinking about my condition and what I cannot do on any given day. If I follow it with gratitude I can see the good and gracious in my world. I also practice a mind-body technique to manage the pain.

REPLY
slf202mcinfo | @slf202mcinfo | Apr 11 6:13am
In reply to @nyxygirl ""I began to experience almost constant aches and pains in my legs, not debilitating but definitely..." + (show)
@nyxygirl

"I began to experience almost constant aches and pains in my legs, not debilitating but definitely more than just annoying." “it feels like my muscles/tendons or ligaments are coming away from the bone, like really bad shin splints”. -- >>Hello @slf202mcinfo>> does this mean the pain is in the front of your calves ?

- I have been experiencing a searing pain very deep in my lateral right thigh. The onset coinciding with my PMR( ever since last spring) , so notably it is persisting throughout Prednisone dose as high as 30 mg until now ( tapered down to 3 mg/day) . My questions for you, if you don't mind, are 1) have you had any imaging done ? 2) can a pysiatiatrist or physical doctor /therapist "provoke' the pain by moving your leg around ? I saw my pysiatrist yesterday - that her is conclusion that the pain cannot be provoked , MRI imaging done in Nov. showed bursitis at top of femur- the pain is quite severe if she pushes on the area where the bursae is. I am trying to strengthen the gluteus medius.

20 mg of Prednisone daily for 90 days, decreasing over next six months>>> this regime of prednisone seems different from others on this forum who have described their schedules, i seem to recall a general step-down that quickly gets you to 10 mg/day , and then it will occur (much) more slowly*. -- Have you decreased your Prednisone dose yet ? How are you feeling today ? : )
* see attached table 3

Jump to this post

I have not had any imaging done but after learning more on this website, I plan on discussing this with my doctor. We do not have anyone in our community identifying as a physiatrist but I do see a very well qualified and experienced physiotherapist and I follow her recommendation on daily exercising, very specifically like you, to improve my glute strength. I also see a therapeutic massage therapist; I find her treatments “good pain” and she provokes the pain by massaging areas of the lower legs specifically rather than manipulating the leg. She talks of opening pathways and restoring blood flow.

I was diagnosed in February although now I am sure it started much earlier and started on 20 mg of prednisone. Plan is after this 3rd month decrease the prednisone by 2.5 mg each month until down to 10mg. Then another consult with my doctor.

I returned to my “Gentle Yoga” class this week. I have been doing yoga for 40+ years and at 76 I am very content with this practice. Yoga, exercising specifically suggested by my physiotherapist and stationary bike for cardio are my weekly exercise routines.

My discomfort and stiffness are tolerable, certainly not the spasm type pain I experienced before prednisone which was very difficult to tolerate and made sleep almost impossible.

REPLY
rn1024 | @rn1024 | Apr 11 9:35pm

Has anyone experienced uncontrollable shaking ? Had it last nigh, I’m on Actemra, very scary , called my Rheumatologist, she was not help.

REPLY
1 reply
sloped483 | @sloped483 | Apr 12 7:49am
In reply to @rn1024 "Has anyone experienced uncontrollable shaking ? Had it last nigh, I’m on Actemra, very scary ,..." + (show)
@rn1024

Has anyone experienced uncontrollable shaking ? Had it last nigh, I’m on Actemra, very scary , called my Rheumatologist, she was not help.

Jump to this post

Methylprednisone caused me daily late-afternoon shaking and was switched to prednisone and no more shaking.

A few questions for you:

Is this a new symptom?
Are you still on steroids?
And/or are you reducing?

REPLY
menetski4 | @menetski4 | Apr 14 9:01am

I have had ax-Spa for over 40yrs. Recently diagnosed with MGUS, then PMR. My most pressing problem is vertebral fracture(s). I don’t like being on Prednisone 15mg but can barely function without it due to debilitating pain. I know I need more work-up but I am reluctant to try treatments that “might” work because I seem to have reactions to all:
Methotrexate-elevated liver enzymes
Infliximab-foot drop
Celebrex-small bowel bleed
Meloxicam-small bowel bleed
Prednisone-sqamous cell carcinoma x5 and vertebral fractures x2
Hydroxychloroquine- did not help and I developed PMR while taking.
Who can relate?

REPLY
1 reply
DadCue | @dadcue | Apr 14 10:15am
In reply to @menetski4 "I have had ax-Spa for over 40yrs. Recently diagnosed with MGUS, then PMR. My most pressing..." + (show)
@menetski4

I have had ax-Spa for over 40yrs. Recently diagnosed with MGUS, then PMR. My most pressing problem is vertebral fracture(s). I don’t like being on Prednisone 15mg but can barely function without it due to debilitating pain. I know I need more work-up but I am reluctant to try treatments that “might” work because I seem to have reactions to all:
Methotrexate-elevated liver enzymes
Infliximab-foot drop
Celebrex-small bowel bleed
Meloxicam-small bowel bleed
Prednisone-sqamous cell carcinoma x5 and vertebral fractures x2
Hydroxychloroquine- did not help and I developed PMR while taking.
Who can relate?

Jump to this post

I can relate to much of it ...

I was diagnosed with ax-SpA about 35 years ago --- Reactive Arthritis with Uveitis

High dose prednisone was prescribed by my ophthalmologist to treat more than 30 flares of uveitis in the first 20 years. I used leftover prednisone to treat other things including trigeminal neuralgia. The usual medications to treat trigeminal neuralgia didn't work well and caused side effects.

Frequent use of high dose prednisone probably contributed to early onset cataracts. Cataract surgery restored vision in both eyes.

I only used bursts of high dose Prednisone followed by a fast taper before PMR was diagnosed. I didn't think I needed a primary care doctor or a rheumatologist until after PMR was diagnosed.

PMR diagnosed over 15 years ago --- high doses of prednisone prescribed on a long term basis caused a plethora of side effects. Prednisone side effects were treated with a plethora of other medications. All of the other medications caused more side effects on top of prednisone side effects.

NSAIDs -- GI problems and not recommended with prednisone
Methotrexate ---elevated liver enzymes with nausea/vomiting
Leflunomide --- multiple infections which required antibiotics and the infections probably caused flares of reactive arthritis

Foot drop (acute onset) caused by severe spinal stenosis with idiopathic peripheral neuropathy.

Actemra (tocilizumab) --- good response!

I tapered off Prednisone in one year. I tapered off prednisone for the first time in 12 years. While on 3 mg of prednisone, it was discovered that I had adrenal insufficiency. I needed to stay on 3 mg of prednisone for an extended period of time otherwise I could have tapered off prednisone sooner.

When I was finally able to get off Prednisone for the first time in 12 years, I had a flare of panuveitis. I was switched to Humira with 60 mg of prednisone. Humira didn't seem to work well for PMR and I was stuck on 15 mg of prednisone again.

I switched back to Actemra --- good response again.

I tapered off Prednisone in 3 months the second time while doing more frequent injections of Actemra. When Actemra was stopped because of supply problems during Covid -- my symptoms worsened. I was put back on Humira and prednisone again until supplies of Actemra improved.

I'm currently doing monthly Actemra infusions. I have no serious side effects. I'm off nearly all my other medications used to treat Prednisone side effects.

In addition to medical interventions, I also had surgical interventions besides cataract surgery.
Hand surgery fixed a "spontaneous" tendon rupture.
Knee replacement surgeries fixed severe arthritis in the both knees.
Microvascular Decompression (MVD) surgery fixed Trigeminal Neuralgia

I still have foot drop and lower extremity numbness and weakness. Lumbar fusion surgery is pending. Severe arthritic changes in my lumbar spine caused severe spinal stenosis. Pain is the deciding factor for a lumbar fusion but the pain isn't severe enough currently. Surgery for severe lumbar stenosis has a poor prognosis because of all the prednisone I took for 35 years. I would also need to stop Actemra again and I don't want to do that. I don't want to have anymore surgeries ... I'm getting too old for major surgery.

As long as the pain is tolerable ... why cause more pain? I refuse to take prednisone again unless it is absolutely necessary.

REPLY
1 reply
menetski4 | @menetski4 | Apr 14 11:11am
In reply to @dadcue "I can relate to much of it ... I was diagnosed with ax-SpA about 35 years..." + (show)
@dadcue

I can relate to much of it ...

I was diagnosed with ax-SpA about 35 years ago --- Reactive Arthritis with Uveitis

High dose prednisone was prescribed by my ophthalmologist to treat more than 30 flares of uveitis in the first 20 years. I used leftover prednisone to treat other things including trigeminal neuralgia. The usual medications to treat trigeminal neuralgia didn't work well and caused side effects.

Frequent use of high dose prednisone probably contributed to early onset cataracts. Cataract surgery restored vision in both eyes.

I only used bursts of high dose Prednisone followed by a fast taper before PMR was diagnosed. I didn't think I needed a primary care doctor or a rheumatologist until after PMR was diagnosed.

PMR diagnosed over 15 years ago --- high doses of prednisone prescribed on a long term basis caused a plethora of side effects. Prednisone side effects were treated with a plethora of other medications. All of the other medications caused more side effects on top of prednisone side effects.

NSAIDs -- GI problems and not recommended with prednisone
Methotrexate ---elevated liver enzymes with nausea/vomiting
Leflunomide --- multiple infections which required antibiotics and the infections probably caused flares of reactive arthritis

Foot drop (acute onset) caused by severe spinal stenosis with idiopathic peripheral neuropathy.

Actemra (tocilizumab) --- good response!

I tapered off Prednisone in one year. I tapered off prednisone for the first time in 12 years. While on 3 mg of prednisone, it was discovered that I had adrenal insufficiency. I needed to stay on 3 mg of prednisone for an extended period of time otherwise I could have tapered off prednisone sooner.

When I was finally able to get off Prednisone for the first time in 12 years, I had a flare of panuveitis. I was switched to Humira with 60 mg of prednisone. Humira didn't seem to work well for PMR and I was stuck on 15 mg of prednisone again.

I switched back to Actemra --- good response again.

I tapered off Prednisone in 3 months the second time while doing more frequent injections of Actemra. When Actemra was stopped because of supply problems during Covid -- my symptoms worsened. I was put back on Humira and prednisone again until supplies of Actemra improved.

I'm currently doing monthly Actemra infusions. I have no serious side effects. I'm off nearly all my other medications used to treat Prednisone side effects.

In addition to medical interventions, I also had surgical interventions besides cataract surgery.
Hand surgery fixed a "spontaneous" tendon rupture.
Knee replacement surgeries fixed severe arthritis in the both knees.
Microvascular Decompression (MVD) surgery fixed Trigeminal Neuralgia

I still have foot drop and lower extremity numbness and weakness. Lumbar fusion surgery is pending. Severe arthritic changes in my lumbar spine caused severe spinal stenosis. Pain is the deciding factor for a lumbar fusion but the pain isn't severe enough currently. Surgery for severe lumbar stenosis has a poor prognosis because of all the prednisone I took for 35 years. I would also need to stop Actemra again and I don't want to do that. I don't want to have anymore surgeries ... I'm getting too old for major surgery.

As long as the pain is tolerable ... why cause more pain? I refuse to take prednisone again unless it is absolutely necessary.

Jump to this post

Thank you for your response. I think we have so much to learn about these interrelated conditions and how to treat them.
I don’t think there is anything more I can do to improve the terrain. I have optimized my approach healthy lifestyle: an anti-inflammatory (no gluten or dairy, low carb diet), relationships and useful purposeless, meditation, movement (walking and weight training as tolerated), and I am always working on better sleep(sometimes complicated by pain).
What else??? Suggestions always welcome.

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