Hereditary: Hi folks Would anyone know if PMR or... - PMRGCAuk

PMRGCAuk

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Hereditary

notnice profile image
27 Replies

Hi folks

Would anyone know if PMR or GCA is hereditary. I have GCA and my daughter, who has a low thyroid feels very listless and everything is an effort for her, keeps getting pain in all her muscles at different times but it is all the time, could a low thyroid do this?

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notnice profile image
notnice
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27 Replies
piglette profile image
piglette

I read somewhere that they reckon twenty five per cent is genetic and seventy five per cent is environmental regarding auto immune diseases. My mother had ME which is another auto immune disease, and my niece is coeliac.

notnice profile image
notnice in reply to piglette

Oh thanks for that, I will have a word with her about it.

Annodomini profile image
Annodomini in reply to piglette

My dad had PMR in his 70s. Mine arrived when I was 70.

notnice profile image
notnice in reply to Annodomini

This is the same as Parijm with their mum, so it could be genetic. Thank you.

Parijm profile image
Parijm

My mum had PMR, can't recall at what age - in her 70's or 80's. Mine arrived last year when I was 61 yrs.

notnice profile image
notnice in reply to Parijm

Oh so it is possible it could be genetic thank you

PMRpro profile image
PMRproAmbassador

There is a higher rate of PMR and GCA in populations which have Scandinavian forebears - but there is no evidence that it is hereditary in the strict sense of the word. There are probably many other factors involved and the incidence is higher the further north you go in Europe which if course matches the Scandinavia gene pool.

It also depends to some extent how old your daughter is. PMR can be identified in under 50s - but getting a doctor to accept that idea is often very difficult. There are many other causes of what we call PMR - since it isn't the disease itself, it is the symptoms of an underlying disease process. PMR should be the diagnosis after all the others have been ruled out or discounted by tests.

If your daughter is hypothyroid then that on its own can cause the symptoms you describe. So can very low vit D levels. Has she had a virus over the winter? Post viral fatigue can do the same.

She DOES need to ask the GP for a battery of tests to start with. But if she's the age my daughters are - I wouldn't start by asking if it could be PMR!

notnice profile image
notnice

Thank you for that she is 41, yes she does seem too young to be having PMR, thank you again.

30048 profile image
30048

I have been told by two doctors that it is not.

notnice profile image
notnice in reply to 30048

Ok thanks I will keep that information in mind.

Tski profile image
Tski

I have been told that it is hereditary by 2 doctors.

Tski profile image
Tski

I forgot to say both my parents had it in their 70's then I got it at age 57. I've had it for a year and a half now , longer then both of them combined.

notnice profile image
notnice in reply to Tski

Hi Tski, are you talking about PMR, I have GCA diagnosed in Feb this year, I know the two are connected and luckly I Do not have PMR yet. If it is genetical and I have GCA could my daughter get PMR? Hope you can help.

PMRpro profile image
PMRproAmbassador in reply to notnice

It isn't genetically inherited in the sense that something like cystic fibrosis or muscular dystrophy is inherited - there each parent caries a specific gene which may or may not be handed down. When a child inherits that gene from both parents they develop the disease. It is unlikely that there is a specific gene in the case of PMR or GCA - since many people develop it but their children don't ever do so. It is just that people with a certain gene pool are more likely to do so but it is very general.

It is also more likely that someone with PMR may go on to develop GCA than the other way round - but that is because PMR is one of the symptoms of GCA so someone who has GCA may show up the symptoms of PMR first.

notnice profile image
notnice in reply to PMRpro

Hi PMRpro thank you very much for that, it is very informative and interesting. So could it be possible that me having GCA I may not get the symptoms of PMR?

PMRpro profile image
PMRproAmbassador in reply to notnice

I know a few people who have had GCA but have never developed the pain and stiffness of PMR - and are heartily grateful!! One had something like PMR pain about 3 years into GCA and it turned out she had a very low vit D level. That is something that can also cause PMR-type symptoms - she persuaded her doctor to do a vit D test and it was scraping the bottom of the barrel! A few weeks of high dose vit D sorted it out - she said she KNEW it wasn't PMR although her GP was sure it was. All she ever had was the headache from hell at first.

notnice profile image
notnice in reply to PMRpro

That is reassuring as I was concerned about getting PMR symptoms. I will have to remember about the vit D. Thank you very much for your more than helpful answers the are so reassuring.

PMRpro profile image
PMRproAmbassador in reply to notnice

It doesn't mean you definitely won't get PMR symptoms as you reduce the dose of course - it may be your GCA was caught so fast that there wasn't time for it to show up! But it isn't inevitable.

Tski profile image
Tski in reply to notnice

I'm sorry, I miss interpreted your question. Honestly, I do not know.

notnice profile image
notnice in reply to Tski

Ok no worries, I am sorry I find it hard to explain myself.

PMRsux profile image
PMRsux

I've always read & been told mostly the same as ^^ info, that they're not hereditary per se, but that they do have a 'tendency' to run in families. So that, if you have 1 or > immed.-fam. mm.'s w/either 1 (as they ^ your chances moreso than aunts/uncles/cousins do), you do have an ^'ed risk of developing them, compared to someone w/no family involvement.......But I also wanted to mention that I am 52, & that I was dx'ed w/PMR in '02: 1 month > I turned 39!! My drs. all said I, 'in no way fit the PMR-profile', even down to being sero-negative for a very long time/yrs.; but that I nonetheless was a 'poster-child' for severe atypical-PMR, b/c I had a textbook-case. I did receive much initial skepticism from rheumys- simply due to, ' You're not even 50! So you CAN'T have PMR; it HAS to be RA, or something eIse..." !?! WRONG!! (I have had to be on varying amts. of pred. ever since :/ ... I've done many slooow wean.-trials, but the lowest dose I've ever tolerated has been 5mgs.)...I've met women online that were (correctly, by 2-3 drs.), dx'ed at 28!, 31, 35, etc. There *are* a few square-peg-zebras among us!! So, if the symptoms are there, don't allow drs. to dismiss, or not consider the possibility of dx, simply based on young/er age of presentation!! :)

notnice profile image
notnice in reply to PMRsux

Thanks for that.

PMRpro profile image
PMRproAmbassador in reply to PMRsux

Oh absolutely - I jump up and down at the "it can't be PMR as you are under 50" because it is twaddle! But getting a doctor to accept it is hopeless. Start with getting them to rule out the other options and you might get somewhere.

One lady in her 40s recently presented to her optician with absolutely textbook GCA and that was his immediate response "I know what it is... oh no, you're too young!" There is a newspaper report of a 37 year old man in South Wales who died of stroke a couple of years ago. At PM the pathologist found undiagnosed GCA which was the cause of the stroke. Sorry - you can't argue with pathologists, they know it all!

There is a form of GCA that appears in teenagers and then there is a version that is diagnosed in 30s and 40s. There is no way it can simply just disappear for 10 years and then re-emerge is there?

I believe that a LOT of fibromyalgia patients don't have fibro - they have PMR. Or the diagnosis is depression, your age, psychosomatic.

PMRsux profile image
PMRsux in reply to PMRpro

No, I've never heard of the 'disappearing' ? form of GCA either!! But perhaps lying dormant/latent, after treatment, for many yrs., until it becomes 'active' again?? Maybe following a triggering-event ?? (like a virus, severe stress, illness, trauma etc.), much like PMR is sometimes triggered?? I don't know, just guessing.... & I agree, I think there are quite a few cases of undx'ed PMR, brushed off as 'just fibro'; & w/out even considering that you CAN have both!! I have had it for 20 yrs.; 7 yrs. before the PMR developed (literally in 12 hrs., which was the main reason mine was 'caught' quickly by my fam. dr.)...But b/c there is so much symptom overlap between the 2, it's 'easy' to miss w/careless drs. (ESP. when a doc is quick to brush someone off w/the 'it's just fibro'-dx & get them out the door)...Well, that *and* the fact that it's almost UNheard of here, among everybody- the medical-community included!! (Which also helps explain why it's SO 'rare' in the US...)!

PMRpro profile image
PMRproAmbassador in reply to PMRsux

I meant more in the sense of how can you say a teenager can have it, a 32 year old can have Takayasu's which is similar and so can a 42 year old - but a 43 year old can't have GCA. There isn't that much difference.

Never ceases to amaze me how PMR/GCA is so "rare" in the US when the biggest studies were done there in Olmsted County, Minnesota. You have massive communities with Scandinavian genes...

Yes - when I finally got down to internet research and identified what I had there was such an overlap between the two I did wonder if it was fibro for a while. I was fairly sure it was PMR - the first dose of 15mg pred proved it! It took 6 hours to go from hardly able to manage one step to walking downstairs and back up normally, not like a toddler, one step at a time!

Dianeka profile image
Dianeka

I have PMR and suspect that it is hereditary since my uncle also had PMR. I have hypothyroidism as well and wonder if there's a connection between PMR, low thyroid and heredity??

Dianeka profile image
Dianeka

Maybe she's low in vitamin B12. If she is vegetarian or not eating enough animal products she might not be getting enough vit B-12. Just a thought.(B12 is only found in animal products. Could she be diabetic?

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