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.

@lanieg

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 " 🥴

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Now that is quite a collection of things. How did your doctor distinguish one thing from another?

After awhile, my rheumatologist started to refer to everything as "systemic inflammation." She thought I was an interesting patient because I had a "full range" of rheumatology problems.

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@richardab

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.

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Thank-you for contributing. I have a hard enough time understanding how the HPA axis works. When the thyroid gets into the act, it becomes hopelessly complicated.

https://www.verywellhealth.com/hypothalamic-pituitary-adrenal-hpa-axis-5222557

My doctor says my thyroid function is normal so I need to leave it alone!

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@dadcue

Now that is quite a collection of things. How did your doctor distinguish one thing from another?

After awhile, my rheumatologist started to refer to everything as "systemic inflammation." She thought I was an interesting patient because I had a "full range" of rheumatology problems.

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I was diagnosed with fibro around 2000 and PMR last month. I was very lucky to find a doctor whose mother had fibro so I was treated very quickly. He did send me to a rheumatologist at one point but all he did was tell me to swim, seriously! That was back when too many assumed that those of us with fibro are lazy or sedentary.

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@dadcue

Now that is quite a collection of things. How did your doctor distinguish one thing from another?

After awhile, my rheumatologist started to refer to everything as "systemic inflammation." She thought I was an interesting patient because I had a "full range" of rheumatology problems.

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I was fortunate to live in Raleigh, NC when the SLE was diagnosed. I connected with an excellent rheumatologist and was treated with plaquinel (sp?). Being a scientist, I recognized the symptoms of diabetes and went to Duke University for treatment by an endocrinologist who also diagnosed the Hasimoto's. Breast cancer was caught on a mammo and treated by a oncology surgeon. PMR was diagnosed by an ER doc and is being treated by a rheumatologist. Experienced, caring and knowledgeable doctors were my key to successful diagnosis and treatment.
I pray you can find relief.

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I have had a very mild case of hashimotos for years but basically asymptomatic. Of course had tests run to rule out the biggies before pmr dx finalized. Because I have two auto-immune dx my primary wants to do even more testing to see if some obscure dx’s are lurking around the corner. I will probably go ahead with it, just to be sure but I don’t expect to find anything/am not worried. But I guess we will see for sure.

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@freeme

I have had a very mild case of hashimotos for years but basically asymptomatic. Of course had tests run to rule out the biggies before pmr dx finalized. Because I have two auto-immune dx my primary wants to do even more testing to see if some obscure dx’s are lurking around the corner. I will probably go ahead with it, just to be sure but I don’t expect to find anything/am not worried. But I guess we will see for sure.

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I think it is best when doctors obtain as much information that they can. There are some limits to what can be done with the information.

I remember when I was originally diagnosed with reactive arthritis over 30 years ago. The doctor mentioned a genetic test call HLA-B27. He said it wouldn't change his diagnosis whether it came back positive or not. I just politely said that I would be interested in knowing what it was even though I had no clue what HLA-B27 was all about.

My HLA-B27 came back positive and it probably didn't change anything. However my being HLA-B27 positive was plastered all over my medical records. It meant something to the doctors that followed.

https://www.healthline.com/health/hla-b27-antigen
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This is a good example of one group's argument of where PMR is on the auto-inflammatory to autoimmune spectrum.

Floris a, Piga M, Cauli a, et al. Polymyalgia rheumatica: an autoinflammatory
disorder?. RMD Open 2018;4:e000694. doi:10.1136/ rmdopen-2018-000694

Shared files

editorial 2018 e000694 (editorial-2018-e000694.full_.pdf)

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@dadcue

I think it is best when doctors obtain as much information that they can. There are some limits to what can be done with the information.

I remember when I was originally diagnosed with reactive arthritis over 30 years ago. The doctor mentioned a genetic test call HLA-B27. He said it wouldn't change his diagnosis whether it came back positive or not. I just politely said that I would be interested in knowing what it was even though I had no clue what HLA-B27 was all about.

My HLA-B27 came back positive and it probably didn't change anything. However my being HLA-B27 positive was plastered all over my medical records. It meant something to the doctors that followed.

https://www.healthline.com/health/hla-b27-antigen

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@dadcue HLA ( human Leukocyte antigen) is also referred to a major Histocompatibility complexes I and II .

So in the figure below for GCA - you can see that DC cells ( dendritic cells) 'present antigen' to T-cells have MHC II on the surface . HLA DR -04 allele is (an MHC II) is mentioned often in studies of PMR patients.

I worked in the field of xenotransplantation for many years -- transplant biology and many others fields have worked out the immune cells of these pathways ! it is really quite mind boggling !

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@nyxygirl

@dadcue HLA ( human Leukocyte antigen) is also referred to a major Histocompatibility complexes I and II .

So in the figure below for GCA - you can see that DC cells ( dendritic cells) 'present antigen' to T-cells have MHC II on the surface . HLA DR -04 allele is (an MHC II) is mentioned often in studies of PMR patients.

I worked in the field of xenotransplantation for many years -- transplant biology and many others fields have worked out the immune cells of these pathways ! it is really quite mind boggling !

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I wish to understand everything but it very quickly becomes mind boggling.

Xenotransplantation sounds like a fascinating field to be involved in.

I'm interested in the innate immune response because I was diagnosed with reactive arthritis some 30 years ago. My immune system overreacts to infections.

Then there is the adaptive immune system:

"The adaptive immune system takes over if the innate immune system is not able to destroy the germs. It specifically targets the type of germ that is causing the infection."
https://www.ncbi.nlm.nih.gov/books/NBK279396/#:~:text=The%20innate%20immune%20system%20is,the%20%22nonspecific%22%20immune%20system.
I barely understand the information contained in the above link.

The "immune memory" concept is now the thing that worries me the most. My rheumatologist said that my immune system isn't likely to "forget" what it has been attacking for all these years. He was referring to how my immune system has been attacking me. He thinks immune memory is a characteristic of autoimmune conditions that are allowed to persist for too long. He said an immune memory is detrimental when one has an autoimmune condition.

My immune system is completely deranged which is all I know.

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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?

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