Another autoimmune disease?: So I am interested in... - PMRGCAuk

PMRGCAuk

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Another autoimmune disease?

paleolady profile image
108 Replies

So I am interested in finding out how any folks on this forum had or have PMR and were diagnosed with another autoimmune disease.

I believe my Dr. thinks I will develop another disease because I have a positive ANA.

Anyone who cares to share, I appreciate it.😘

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paleolady profile image
paleolady
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108 Replies
Baileyw06 profile image
Baileyw06

I was diagnosed with PMR in 2017. In November of 2022, my primary care doctor sent me to a Rheumotolgist because I was not getting any better.They did special bloodwork and I was diagnosed with Myositis, with underlying Lupus, schlerderma, and Rheumatoid Arthritis.I am now on Plaquenil,Lefluonide and prednisone.It seems like if you get one you get others!

paleolady profile image
paleolady in reply to Baileyw06

Yes. I am sorry for overwhelming health conditions. Please take care.

Baileyw06 profile image
Baileyw06 in reply to paleolady

Thanks, I am doing well on the medication I am taking.

jaycee444 profile image
jaycee444 in reply to Baileyw06

I have Ulcerative Colitis besides my PMR

paleolady profile image
paleolady in reply to jaycee444

Thank you for your reply

Jacuzzi profile image
Jacuzzi in reply to Baileyw06

Touch wood PMR and no other so far. 1 year in so far.

Surami2020 profile image
Surami2020

I was diagnosed with PMR in early 2020 and 6 months later was given a vague diagnosis (via Skype appointment)of inflammatory arthritis, leaning toward RA. 3 months after that the diagnosis was refined to psoriatic arthritis.

paleolady profile image
paleolady in reply to Surami2020

Thank you for your reply

Bcol profile image
Bcol

2.5 years in and only PMR for me ( as far as I know and so far)

123-go profile image
123-go in reply to Bcol

Long may it continue- re. other things, not the PMR of course.🙂

paleolady profile image
paleolady in reply to Bcol

Thank you for your reply

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

It’s a possibility, but not a given. One link suggests a quarter of patients are liable to have multiple diseases…..luck of the draw, genetics and environmental conditions apply -

ncbi.nlm.nih.gov/pmc/articl...

benaroyaresearch.org/blog/p...

I had GCA for almost 6 years, now been in remission for same amount of time, no others….

paleolady profile image
paleolady in reply to DorsetLady

I am aware of overlapping disease, just not much printed about PMR.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to paleolady

 “just not much printed about PMR.”.,

Nothing new there then!

Rose54 profile image
Rose54

Under-active thyroid for 30 years PMR 8 years

paleolady profile image
paleolady in reply to Rose54

Thank you for your reply.

tempusfugi profile image
tempusfugi in reply to Rose54

Sounds a bit like me, Rose54, at least for the thyroid. Underactive thyroid for 37 years PMR diagnosed April 2022. I have a feeling I have a long road ahead.

bussell profile image
bussell

twelve years ago I developed a form of alopecia which is an auto immune condition. Painless and not life threatening though depressing! Ten years later along comes PMR. Was it brewing all that time? Might there be a connection? No idea! Glad to hear your health problems are under control though.

paleolady profile image
paleolady in reply to bussell

Thank you for your reply.

PMRpro profile image
PMRproAmbassador

If you have a positive ANA it is quite likely you could develop something else - and depending on the titre, it is possible it is already present since a positive ANA is very rare in PMR. But a titre of 1:40 is "normal" and these days only above 1:80 is considered as significant.

paleolady profile image
paleolady in reply to PMRpro

I have had a positive ANA for 10 years. No disease detected until PMR.

PMRpro profile image
PMRproAmbassador in reply to paleolady

What is the titre though?

paleolady profile image
paleolady in reply to PMRpro

1:320 consistant. Dr. calls it persistant😜

PMRpro profile image
PMRproAmbassador in reply to paleolady

This

ccjm.org/content/ccjom/69/2...

says "Even ANAs that were positive at a titer of 1:320 or greater were more likely to be falsely positive (55%) than indicative of any rheumatic disease (45%)."

so who knows. Clear as mud isn't it!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Well if it is for you, heaven help the rest of us 🤔

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Maybe we should be kinder about the docs!!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

True… but they [hopefully] do have a head start over most of us - well me anyway….

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Sometimes I'm not so sure ...

Bachfugue profile image
Bachfugue in reply to paleolady

What is a ‘positive ANA’?

Flivoless profile image
Flivoless in reply to Bachfugue

Antinuclear Antibody

Bachfugue profile image
Bachfugue in reply to Flivoless

Thanks for this. And it’s meaning for investigation of disease? Hadn’t heard of it before.

Mrsd12f profile image
Mrsd12f

Yes. I have Sjögren’s, diagnosed at the same time as PMR.

paleolady profile image
paleolady in reply to Mrsd12f

Thank you for your reply.

jaycee444 profile image
jaycee444

I have Ulcerative Colitis besides PMR

paleolady profile image
paleolady in reply to jaycee444

Thank you for your reply

Rancho profile image
Rancho

I was diagnosed with pmr in 2009 and then GCA in 2014 but this was subsequently diagnosed as myasthenia Gravis in 2018

Downtime profile image
Downtime

I’ve had RA for 8 years and last year I was diagnosed with PMR . I probably have sjogrens too but it hasn’t been officially diagnosed. I am seronegative which makes these diagnoses difficult but I’m doing ok on methotrexate which I’ve taken for years and now steroids. Hoping I can rid myself of the PMR as dealing with one thing is enough for me!

BorderLuv profile image
BorderLuv

Dx low-thyroid in 2000, PMR in 2004 (resolved in 2006), vitiligo 2008. Keeping fingers crossed that will be it.

Songbird6 profile image
Songbird6

Hi, I had Fibromyalgia for years, then Osteoarthritis, now PMR. I have heard that generally if you suffer with one auto immune illness you are inclined to get another! 🤷

Lovetobe profile image
Lovetobe in reply to Songbird6

I also had fibromyalgia in 2012 then pmr in 2021 🤷‍♀️my mother had lupus and 2 of my aunts , just keeping everything crossed Lupus stays away x

Flipper12345yellow profile image
Flipper12345yellow in reply to Songbird6

Fibromyaalgia and osteoarthritis are fortunately not auto immune diseases according to my rheumatologists.I have both as well as autoimmune disease.

PMRpro profile image
PMRproAmbassador in reply to Flipper12345yellow

There is a link I put up elsewhere - there is some suspicion that OA isn't just wear and tear but also active destruction which could be a/i. There is also evidence that at least some fibro is a/i in origin,

Blearyeyed profile image
Blearyeyed in reply to Flipper12345yellow

Goes to show how much Rheumatologists are keeping up with current research . Published papers are showing evidence of Fibro being caused via a number of pathways , one paper I read recently proved 24% of participants had autoinflammatory markers and activity and 19% had autoimmunity ones. It's so hard to find sound advice when the professionals either don't take conditions seriously enough , or have little real knowledge about them.

Flutterbies57 profile image
Flutterbies57

I’m collecting autoimmune diseases. I have 4 I think .fibromyalgia 19 years before PMR . lichen plants longer than that . I have forgotten what the 4th is . Recently been diagnosed with 5 more problems but havnt checked to see if they r autoimmune problems or not . I am just rather overwhelmed . I think old age has taken over.

Louisa1840 profile image
Louisa1840

A rheumatologist I saw some 3 or 4 years ago said that PMR always overlays itself over another condition. He said I have inflammatory arthirtis underlying the PMR. Who really knows aren't we all (they all) just shooting in the dark?

PMRpro profile image
PMRproAmbassador in reply to Louisa1840

He's welcome to identify another condition for me - providing it is one with a really good management option! He's right, PMR isn't the disease - but it is usually some sort of autoimmune problem that they haven't yet identified. The only option, as with pretty much all a/i disorders, is good symptom management.

Logic profile image
Logic

I have recently been diagnosed with lichen sclerosis which my dermatologist tells me is an autoimmune disease.

Hirwaen profile image
Hirwaen in reply to Logic

me too, improved/ better since being on Steroids for PMR for almost 6years!!!

Flipper12345yellow profile image
Flipper12345yellow in reply to Logic

Lichen sclerosis is another awful disease. You have my sympathy .

Sallyaches profile image
Sallyaches

I had severe asthma in early life, have lichen plants and reactive rheumatoid arthritis which may be late onset rheumatoid arthritis but is zero negative. I am taking Azathioprine which seems to control everything nicely but any reduction in dose and muscle and joint pains are back with force.

whitefishbay profile image
whitefishbay

I have had Polymyalgia Rheumatica (gone now), asthma, touch of gout in one toe, and Osteo Arthritis (never been officially diagnosed). Also have hypothyroidism.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to whitefishbay

OA is a degenerative disease caused by a physical breakdown of the cartilage, and eventually the bones, it is not an autoimmune disease [like RA or PMR/GCA] which are caused by a reaction in the immune system.

whitefishbay profile image
whitefishbay in reply to DorsetLady

Oops. Thanks for the clarification.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to whitefishbay

😊.. no probs, whatever it is, it’s a blooming nuisance….

whitefishbay profile image
whitefishbay in reply to DorsetLady

Aging is not for wimps. 🙃

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

It has been hypothesised as an a/i disorder

ncbi.nlm.nih.gov/pmc/articl...

and it is being realised it is not just "wear and tear" but there is also an inflammatory component

niams.nih.gov/roundtable/20....

which could/would account for the relief many get on pred - inflammation of the synovium is a factor in both OA and PMR.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

thanks…. stand corrected.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

I suspect a majority of doctors think the same as you though!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

So do many links on t’internet…🤔.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Well yes - that reflects their beliefs!

Flipper12345yellow profile image
Flipper12345yellow in reply to DorsetLady

Your comments are always so lovely and polite . I agree with you, wear and tear would cause friction on joints, thus resulting in obvious inflammation, not the body attacking itself .

👍

ShadyLady165 profile image
ShadyLady165 in reply to whitefishbay

For the gout, check out Sally Norton's new book, Toxic Superfoods - it's about the damage oxalates can do to the system - much more than just kidney stones. Gout is one of the problems she discusses.

LetsLearn profile image
LetsLearn

Hi! I was diagnosed with GCA in late 2019. Mid 2020 developed PMR. Then late 2020 I stopped taking my meds because my blood results had been good and I was on low dose pred and methotrexate and thought I knew best!! Three months later I relapsed with vasculitis through my body. I’m been off pred for 7 months now with fortnightly Actemra. I’ll be off all meds in March this year and all fingers crossed. Go well yourself!

paleolady profile image
paleolady in reply to LetsLearn

Thank you

2013mayo profile image
2013mayo

I have a ANA positive test 1.640, no one explained what is was, I do have GCA /PMR, lichen planus, osteoarthritis , low thyroid and now osteopenia the several other odd ailments, the list goes on and on just can’t bring to mind everything .

PMRpro profile image
PMRproAmbassador in reply to 2013mayo

Erosive LP can lead to raised ANA, and what causes your hypothyroidism?

2013mayo profile image
2013mayo in reply to PMRpro

?, what is LP.

2013mayo profile image
2013mayo in reply to 2013mayo

oh sorry I’ve just seen lichen planus, re hypothyroid , I’ve no idea, it was when they were investigating the lichen planus it came to light.

Ballybeg profile image
Ballybeg

Yes I was Diagnosed with Oral Lichen Planus which is a Chronic inflammatory Disease in your mouth.

Smithie49 profile image
Smithie49

Like many who have replied I too have a couple of minor problems described as 'possible' autoimmune conditions, oral lichen planus and Sjőgrens as well as PMR.

Abcd123455 profile image
Abcd123455

only PMR so far and hoping for the best

Bertiebeagle profile image
Bertiebeagle

I was diagnosed with PMR 3 years ago, referred to rheumatologist Jan 2022, diagnosed with PsA as well March 2022!

Daffodilia profile image
Daffodilia

Have under active thyroid - auto immune kind and gp warned I might develop another auto immune condition which I did 14 years later - PMR

Broseley profile image
Broseley

I had chronic idiopathic urticaria in 2010 which lasted a year, then developed lichen sclerosus. But I didn't get PMR and GCA until 2021 after my covid jab.

I had asteatotic eczema caused by dry skin 6 months before the start of my PMR in 2021. I’ve often wondered if there is a connection as both are auto immune conditions,

HalleysComet profile image
HalleysComet

I had severe excema as a child, developed asthma in my forties and now have PMR after a Covid jab in 2021.

LCfan profile image
LCfan

I previously had ulcerative colitis in my 30 s and 40 s, resolved by surgery, then PMR started in my 70 s . Now stable and off steroids

gallagher1951 profile image
gallagher1951

My husband had sarcoidosis in 2000. This took a while to be recognised as it is unusual. When he had first symptoms of PMR in 2017, he thought he had sarcoidosis again. He had difficulty getting PMR diagnosed until a locum recognised the symptoms. He had very good treatment at Sheffield’s Hallamshire hospital and thorough monitoring throughout his time on medication

Miacaro45 profile image
Miacaro45

I had mono when I was 8 yrs old, got shingles and then diagnosed with high cholesterol and psoriasis. In my 20’s I was diagnosed with Hashimoto’s. Even though I was not diagnosed with GCA and then PMR until 2020, my doctor feels that I had problems way before and no one recognized things when I complained.

PMRpro profile image
PMRproAmbassador in reply to Miacaro45

Mono itself isn't autoimmune, it is caused by a virus. But having had it apparently increases the risk of autoimmune disease later.

Miacaro45 profile image
Miacaro45 in reply to PMRpro

yes, mono is a virus but once I got that it was downhill the rest of my childhood and later years .

mullochs profile image
mullochs

I have several ! Raynaud’s, Vitiligo, and lichen sclerosis - all present long before my recent PMR flare up. Moderna Covid vaccination may have been the trigger?

PMR2011 profile image
PMR2011

Graves disease in addition to both PMR and 6 years later GCA. Total of 11 years now with all this, but doing well. Glass is half full! 😁

Bramble2000 profile image
Bramble2000

I already had Ankylosing Spondylitis and diabetes before developing PMR.

cranberryt profile image
cranberryt

It is, unfortunately, very common. I developed PMR in 2019. In 2021 I started having gastro symptoms and in 2022 I was finally diagnosed with celiac and colitis.

Amkoffee profile image
Amkoffee

I have several AI diseases. They are like Lay Potato chips...you can't have just one.

perceptual63 profile image
perceptual63

I have autoimmune thyroiditis (a.k.a. Hashimoto disease) since diagnosed in 2006 and now PMR since last January 2022.

phebamom profile image
phebamom

Back in 2004 I was diagnosed with Hughes Syndrome, mixed connective tissue disease, and had a positive ANA for rheumatoid arthritis. I ended up having cancer of the uterus. After the hysterectomy the Hughes Syndrome markers went away, as did the mixed connective tissue disease and the positive ANA. My illness resolved into PMR/GCA, which I have had since at least 2004. I think my body went haywire with an estrogen surge, then no estrogen, and my immune system is still fighting a war that has been over for almost two decades. Infection, viruses, and in my case cancer, can all cause our immune system to go into overdrive. I tested positive for many auto-immune diseases, but it ended up evolving into what I deal with now.

nuigini profile image
nuigini

Diagnosed with PMR in 2014, but may have had it for 5 years prior. Celiac in 2018, had symptoms for decades, but they had grown much worse over time. Microscopic colitis in 2021. Mild osteoarthritis in various joints.

As to what came first? Your guess is as good as mine.

Bluey-1 profile image
Bluey-1

GCA diagnosed June 2022, Oral Lichen Planus diagnosed July 2016

Holycow2 profile image
Holycow2

I was diagnosed with Coeliac disease a few years ago. I did not have symptoms they were checking for carpal tunnel and it came back I was anemic then further test showed coeliac disease. Around 18 months ago I was diagnosed with PMR. I also have patching skin on my neck for years not sure if connected.

Pixix profile image
Pixix

Yes…I had fibromyalgia for years before PMR joined! Rheumatoid arthritis is suspected, waiting to see specialist, could be Ehlers Daroff Syndrome, or spondylitis…on non auto immune front, I have osteo arthritis, essential tremor, asthma like lung issues, blepharitis, carpal tunnel, sciatica & hypermobility! Bit greedy, really, happy to ditch all of them!

clhclh profile image
clhclh

first vasculitis then hashimotos then positive Sjogrens antibodies but not symptoms then autoimmune alopecia and now PMR. Also have muscular dystrophy. *sigh*

BirdieNicky profile image
BirdieNicky

PMR diagnosed in early 2020, collagenous colitis diagnosed in spring 2022.

JuneWalker profile image
JuneWalker

I was diagnosed with Palmoplantar Pustular Psoriasis 10 years ago. December 2021 no signs of PPPP. April 5, 2022 diagnosed with GCA, my PPPP flared up December 2022.

I am "blessed" with PMR, GCA, Sjőgren's, Raynaud’s and diverticulosis (so far) but who's counting?

Be well as you can!

Wallysma profile image
Wallysma

Hi...in 1985 Epstein barr virus, CMV...lead to CFIDS. Then 1990's Sjogren's, Hashimoto's, fibromyalgia, osteoarthritis, 2015 RA, 2022 PMR. The pred is not taking care of all of the symptoms of PMR ...a lot but not all. For a long time meds kept things in check...placquenil and 3 mg pred, tramadol and hydrocodone. PMR hit and things went off the rails. It is a club I don't want to be in. No one else in my family....including cousins has this stuff.

mickam profile image
mickam

I seem to be developing a bit of a collection. So far I have been diagnosed with Type 1 Diabetes, APS, PMR, Ulcerative colitis, and RA. I have been told that having one autoimmune condition increases your chances of being diagnosed with further autoimmune problems.

nallen11 profile image
nallen11

I have Hashimotos and Fibromyalgia

Reddev profile image
Reddev

I’ve had PMR and GCA for fours years. I had Alopecia in my thirties. My husband was in the army and he was an explosive expert. But one went off and killed him. My babies were 6 months and four years old. I think the shock and stress were contributing factors. I also have hypothyroidism.

artfingers profile image
artfingers

Hashimotos, Fibromyalgia, lichen sclerosis, PMR.

Skysey profile image
Skysey

I have PBC, GCA and my rheumatologist is wondering if I have PMR.

gaqke10 profile image
gaqke10

I developed Graves' Disease in 1969, Hashimoto's in 1996, PMR in 2018, and tooth resorption in 2020 (not sure if it has an official name, but my dentist says it's an autoimmune disease because the body's own cells attack the teeth.) It looks like I'm in good company, though.

LemonZest11 profile image
LemonZest11

Blimey, we are a long suffering lot! I was diagnosed with PMR late 2018, the following year GCA/LVV. Everything seems under control with Actemra at the moment. Recently had a helpful conversation with PMRPro re how to taper the last micro dose of pred. 🤞 for you and all of us!

Spanky2019 profile image
Spanky2019

Diagnosed with GCA May 2019(I think that's when). Multiple IA and other diagnoses PMR, Sjogrens dx with positive Ana, osteoporosis - hip T score -3.9, optic neuritis with gca, multiple gastric problems, bradycardia, skin cancer, severe ddd, multiple cervical & lumbar vertebral foraminal stenosis causing cervical radiculopathy (severe arm pain), miniscus tears both knees, occipital neuralgia (pain up back of head & neck & behind eye). Lots of dx but think many overlap with same symptoms & may not be correct dx. Been off pred 5 months, continuing Actemra I think about 3 years.

My saving grace is great medical care & this forum when I was sickest. Whether AI or other DX eventually you manage it all the best you can and live your life.

KASHMIRI1 profile image
KASHMIRI1

I have GCA, Lichen Schleriosis , alopecia and an under active thyroid

GreyOwl profile image
GreyOwl

Yep, apart from PMR I have a couple of other autoimmune diseases.

Katietee profile image
Katietee

Like a number of others here, I too have had an underactive thyroid for over 30 years and PMR for almost 9 years.

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