Question about PMR in addition to other autoimmune disorders?

I was diagnosed with Fibromyalgia (ME/CFS) over 20 years ago and PMR this month (June 2023). I didn't find prednisone helpful to the fibro pain at all. I continue to take Tramadol during the day with an occasional Tylenol and low dose Ambien for sleep.

I was diagnosed with SLE in 1985. That went into remission in 1987 when I was diagnosed with Type 1 diabetes. In 1989 I was treated for Hasimoto's. In 2003 I had a mastectomy for DCIS and Paget's. Now I have been diagnosed with PMR. I haven't had them at the same time but YES my body is definitely on "autoimmune pilot " 🥴

Hi- I don’t think it’s “impossible” to treat everything, but it sometimes feels impossible to me—mainly because the medical system is so siloed, many specialists are reluctant or lack the time or motivation to try to learn more about things they’re less familiar with and deem it “out of their scope of practice,” and in general our healthcare system is not set up well to not address non-linear pain conditions, and even when they’re are proven treatments, they’re hard to access! But…that could also be because I feel really jaded right now.

It’s probably difficult to have one thing (if the one thing is a medication) to address every problem. For things that are more systemic, like maybe the neuromodulators that affects pain perception, chronic pain PT or programs, CBT, meditation, etc… It’s my opinion (and probably shown somewhere) that those strategies can improve many conditions. Would it cure everything though? Probably not.

But..to answer some of your questions >_< Yes, I have multiple autoimmune conditions. I have seronegative spondyloarthropathy (I don’t have a more in-depth classification than that. I don’t know why but it’s rarely described anywhere but in a few articles I’ve found.) I also have POTS and small fiber sensory and autonomic neuropathy (and hypermobility syndrome disorder and fibromyalgia).

There’s no way to be certain, but my POTS and small fiber neuropathy are assumed to be autoimmune because I also have spondyloarthropathy that responds to a TNF blocker. It’s impossible to figure out which came first.

As someone who’s also spent a lot of time in the “pain neuroscience” world, I also feel it’s also possible there is so much overlap here because chronic pain, especially if not addressed quickly and well causes changes to the central nervous system (brain) that can then trigger other conditions. It also seems reasonable to me that if psychological trauma is shown to cause changes in people at a cellular level, why wouldn’t the chronic stress of chronic pain…? But that’s…getting away from your questions >_<

I think you’re right and prednisone is non-specific (as opposed to a TNF blocker), so it can improve—or mask—symptoms of many things (we have run into that problem many times with my dad, who has PMR and had a severe stroke. It’s really hard to tell if an improvement or problem is related to prednisone or something else.)

For me, the approach has been to go after the treatments that are likely to help multiple things. I tend toward those options anyway because if my values and preferences, so PT grounded in pain science is a cornerstone of my treatment. And when there are effective and safe options available that are targeted to my specific problems, we’ve incorporated those things. PT without the TNF blocker wouldn’t and didn’t work for me.

I feel like I’m sounding really confusing. But I guess I’m saying we’re doing a mixture of all the things that feel most effective and fit my values—going broad when things are more broad and going after my most limiting symptoms when we can. I like to find “the best tool for the job” (which is probably different for everyone when you get to gray areas where there may be multiple options) when I can, i.e. I couldn’t function with the chronic tendon pain from spondyloarthropathy, so I needed to do something more with medication and we had to try the TNF blocker. I also have chronic pelvic pain, so I’m in pelvic PT. I have GI symptoms, so I work with a GI dietician.

At the moment, I’m considering IVIG infusions because there’s some limited research to show it could treat the type of small fiber neuropathy I have. A previous neurologist said on-going research suggests it could also improve many of my other conditions, if they’re autoimmune, so maybe that would fit the bill as something with more broad effect, but there’s very little solid research right now. So we don’t even know if my insurance would authorize it.

(Also…disclaimer, I don’t have PMR; I follow the group because my dad has PMR, and I’m a caregiver. There is an autoimmune group on Connect though too).

Hope that helps and doesn’t make things more confusing?

I think you would have much to contribute to a PMR forum. I don't know where I fit in because of a 20 year history of seronegative spondyloarthropathy before PMR was diagnosed. My rheumatologist says I have BOTH! The first one never went away just because PMR was diagnosed.

I understand what you are saying about the medical system being overly specialized. I had to limit myself from seeing too many specialists. I like my rheumatologist and my general practicioner (GP).

I used to have "general" ophthalmologist who I thought was an expert with everything eye related. My long time ophthalmologist and I went back nearly 30 years when everything started to happen.

Uveitis is "associated" with many types of seronegative spondyloarthropathies. After more than 30 flares of uveitis which can cause blindness if not treated quickly, my general ophthalmologist referred me to a "uveitis specialist." My general ophthalmologist didn't have the heart to prescribe high doses of prednisone when I had just manged to taper off prednisone after 12 years of taking it for PMR.

Actemra (IL-6 inhibitor) worked well for PMR and allowed me to taper off prednisone. The uveitis specialist took me off Actemra and said Humira (TNF-inhibitor) was optimal treatment for uveitis.

TNF-inhibitors haven't been shown to be beneficial for PMR . Fortunately my severe case of pan-uveitis cleared up while on Humira and high dose prednisone. Unfortunately, I couldn't taper off prednisone a second time because my PMR symptoms returned. I wanted to go back to Actemra in order to get off prednisone again.

The statement about it being impossible to treat everything was in the context of having different autoimmune conditions that are treated differently. The uveitis specialist was adamantly opposed to treating recurrent uveitis with Actemra. She thought it was just a matter of time before another flare of uveitis would happen if I didn't take a TNF-inhibitor.

My rheumatologist said it would be impossible to treat everything because I couldn't take 2 different biologics. He gave me the choice between Actemra or Humira but not both. I chose Actemra over Humira.

Everyone agreed, including me, that I would be "better off" on either biologic as compared to taking prednisone for the rest of my life.

Just how ridiculously specialized modern medicine is. The uveitis specialist referred me to a "cornea specialist" when I was in danger of having a corneal meltdown.

Thyroid went nuclear 30 years ago. Graves and Hashimotos. Took radioactive iodine to kill thyroid, on replacement since. Smoldering Myeloma several years ago but unknown cause. Then PMR a bit over a year ago. Prednisone 15 mg or more is effective, flares up if less so unknown if another autoimmune is at work.

I agree it is often difficult to classify rheumatologic diseases and symptoms evolve over time. The complex immune mechanism overlap and interact with our genetic makeup.
I was treated with bilateral carpal tunnel and steroid injections worked very well for me. Polymyalgia developed and prednisone again was very effective.
Remission lasted for months before new tendon and ligament inflammation
was diagnosed as psoriatic arthritis. Recent studies have found the incidence
of carpal tunnel is 40% with psoriatic arthritis.
I have found that most autoimmune inflammatory conditions will affect
multiple organ systems and can can be related to sub clinical atherosclerosis.
Make sure you are screened for cardiovascular risk.

What is it about fibromyalgia and PMR other than chronic pain that makes doctors waffle with making a diagnosis? I see fibromyalgia mixed up with PMR frequently.

I had trigeminal neuralgia (TN) which was distinguished from everything else. I said TN was my "inflammation alarm." Whenever the electric shocks to my face started to happen more frequently, I took more prednisone. A neurologist said trigeminal neuralgia wasn't treated with prednisone.

"Conclusions: Findings of this study reveal that inflammation could have played a close and important role in the progression and etiology of TN."

Psoriatic arthritis is well represented on PMR forums. I was probably diagnosed with reactive arthritis because I didn't have psoriasis. However, people don't need to have psoriasis to have psoriatic arthritis ... go figure!

All of the spondyloarthropathies have similarities to PMR. This is what psoriatic arthritis is all about:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6378889/#:~:text=Psoriatic%20arthritis%20(PsA)%20is%20an%20immune%2Dmediated%20inflammatory%20disease,the%20bowel%20(Crohn's%20disease).
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The following link compares PMR to seronegative spondyloarthropathies (SpA)

The inflammation sites for both PMR and SpA are very similar.

People diagnosed with PMR seem to experience trigger fingers and carpal tunnel problems. There seems to be inflammation in tendons and connective tissue in general when people only have PMR. I wonder what is going on since PMR is thought to be a vasculitis and is associated with GCA.

Doctors are funny creatures I have found; human - hahaha. There is really no excuse when they can do a blood test to ind heightened areas that go to PMR. And Fibro is notorious for the trigger points. Of all the doctors I've seen in the last 20+ years, for refills mostly, only two checked the trigger points.
The others simply took my word for it.

GCA from my understanding is vasculitis condition which can lead to blindness. PMR in itself is an inflammatory condition. Too much inflammation over time and one is susceptible to GCA.
I haven't experienced any finger or tendon pain. Mine started in my neck, a hard muscle ache ans stiffness then moved down to shoulders, arms, lower back, pelvis then legs. When I couldn't get out of bed or walk without assistance, I went to the ER.
If I didn't have fibro, I'm sure I 'd have gone sooner but chalked it up to that and overdoing things.