GCA / PMR : I was diagnosed with GCA in August 201... - PMRGCAuk

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GCA / PMR

Phed
Phed

I was diagnosed with GCA in August 2019, speaking to my brother the other day he had just been put on Steroids as they think he might have PMR is it something that is hereditary by any chance? I know of no one in our family that has suffered with it or could it just be coincidence.

42 Replies
oldestnewest

It could be coincidence, but autoimmune issues do have a genetic component. For example, I have a family of five first cousins, children of my mother's sister, all of whom have something - not PMR but other autoimmune or inflammatory diseases - EXCEPT for the adopted son who does not!

DorsetLady
DorsetLadyPMRGCAuk volunteer

Causes.

The cause of GCA is uncertain but it is believed to be an autoimmune disease in which the body's own immune system attacks the blood vessels, including the temporal arteries, which supply blood to the head and the brain.

Genetic and environmental factors (such as infections) are thought to play important roles.

Or just bad luck!

Phed
Phed in reply to DorsetLady

I guess I feel mine is just bad luck, it’s just a shame very little is know about GCA I even had a paramedic ask me if it was a virus so I guess he had never heard of it, he was soon shot down in flames as the training doctor sitting in on the consultation took over my case .

Hi there,

It could be that someone else in your family had GCA/PMR way back but it wasn't diagnosed. I was about 2 years into PMR and as I sat one day it struck me that my paternal grandmother walked exactly as I was forced to. I think she did have it as the last time I saw her when I was a child, my grandfather had to help her get out of her chair and she had the same walk. PMR was never mentioned and unfortunately she died a year later of a massive stroke.

Another possible link is for those of Scandinavian extraction to be more prone to GCA/PMR. After doing my family tree I found my grandmother's people came from York (or Jorvik) the capital of Viking England.

Whatever the cause, GCA/PMR is a real party pooper in people's life but this website and all the experts can help you through. There is light at the end of the tunnel - as they say 'Keep taking the tablets' andI wish you and your brother all the best.

Phed
Phed in reply to BirmLiz

Thank you for your reply and wishing myself and my brother all the best. I have been doing my family tree an I did wonder if any of the family originated from one of the Scandinavian Countries but unfortunately I seem to have hit a brick wall on that one. I agree it’s a real party pooper at the moment I only have the GCA and that in itself was horrendous so I can only hope my brother doesn’t get that as well as, hopefully the steroids will keep the PMR at bay for me, I’m gradually reducing the steroids and the Rheumatologist thinks I’m doing brilliantly so it’s fingers crossed I keep that way, I do find this sight very informative especially when I was first diagnosed as probably like most people it’s a condition that they hadn’t heard of, I guess the worse part is not knowing why it chose me and also people assuming it’s Arthritis and not Atreritis.

PMRpro
PMRproAmbassador in reply to Phed

Don't get into a spiral of being so desperate to know WHY that you ignore today and getting on with living with it. Worrying about what might have caused it will get you nowhere - no-one knows the how never mind the why some get it and some don't. There is no single cause, it is a build-up of many factors that impact on the immune system and eventually one thing is the straw that breaks the camel's back and the immune system throws up its proverbial hands and goes into a tail spin. At least in PMR and GCA it does calm down and for the majority of patients the autoimmune disorder burns out and goes into remission or at least gets to a really low activity so you can manage on a really low dose of pred. That isn't the case for most autoimmune disease.

Phed
Phed in reply to PMRpro

I guess I’m just curious as why GCA picked me, just bad luck I guess, once I got over the shock of what could happen (my fault for looking it up on the internet) I accepted it, it does bother me that it can affect the eyes but I don’t let it worry me as at the end of the day it’s something I have no control over. I have got down to 7mg so at least I’m heading in the right direction

PMRpro
PMRproAmbassador in reply to Phed

The answer to "Why me?" is "Why not me?" The same as for all other unpleasant illnesses. If we knew why - things would be very different.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to BirmLiz

You might like to read this - a slightly tongue in cheek take on Vikings et al- healthunlocked.com/pmrgcauk...

BirmLiz
BirmLiz in reply to DorsetLady

Thanks for that Dorset Lady! I fit the bill except that I was brunette with a red tinge (now salt and pepper). I considered having my 60th birthday party at an urban axe throwing centre in Birmingham but my wrists wouldn't take it! It would be good to have some answers as to whether our warrior blood has made us more susceptible to GCA/PMR even if it doesn't lead to a cure.

Take care and stay safe.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to BirmLiz

Well documented that Scandinavian heritage is certainly a contributor! But why? Your guess is as good as mine, or anybody else’s.

PMRpro
PMRproAmbassador

It isn't hereditary in the true sense of the word:

"It is a disease or disorder that is inherited genetically. Hereditary Diseases are passed on from one generation to another through defective genes. These diseases are transmitted in the same family. The chromosomes in the humans are responsible for passing the traits from the parent to the offspring."

What does happen is that a genetic background makes you more susceptible to things going wrong and PMR/GCA developing. In that sense it is likely to "run" in families as you all have similar genetic backgrounds - but on top of that you need other triggers which not everyone in the family might experience.

Thank you so much for all your replies.

I have a cousin and one Aunt who had PMR. I have GCA. all Icelanders.

Phed
Phed in reply to alvertta

Gosh how long have you had GCA? I know my mum’s side was raised in Norfolk but can’t seem to find out where my dad’s side originated from as I can only get back to 1810 and he hasn’t listed his place of birth, it would just be nice to know if he came from Scandinavia as I have read that it’s more common in those countries than here.

alvertta
alvertta in reply to Phed

I was diagnosed in October 2018. Definitely an Icelander connection. My Aunt (fathers sister) and cousin had PMR for relatively short periods of time.

Phed
Phed in reply to alvertta

Are you still on steroids for GCA or have you come off them now?

alvertta
alvertta in reply to Phed

Still on. I was down to 9 on July 6, 2020. Then my right eye started to go. Lost 1/3 of my eye sight. Permanent. So back to 50. Now at 39. Start actemra in one week.

That is supposed to be the way to get off prednisone. We shall see.

jarn
jarn in reply to alvertta

I lost the vision in one eye rather immediately but there was a very late diagnosis of GCA which led to this. Also started at 100mg of Pred and after 3mos, the effects were horrendous on my body (lack of strong muscles, thin skin which would tear when bumped, thinning of hair etc etc) Not a drug for sissies. However, Rheumy put me on Tocilizamub (Actemra) in February and by May, moon face gone but hair still breaking off/thinning. So finally last week, had hair scalped! Now shortest cut ever but apparently lots of new growth just waiting to appear! Rheumy & GP both happy with results of the lab tests since doing Actemra but had to stop Pred first, then immediately started injecting weekly. Guess it could be a long haul. Like you, am 78, always into sports etc so this was a huge shock as never on any drugs before. So be it. Likely a good thing to have enjoyed good health until now. Finally able to walk with better balance (maybe it was the haircut :-)). Good luck with your journey.

PMRpro
PMRproAmbassador in reply to jarn

Why did they not use the Actemra while you were still on pred? That is how it was trialled and approved for use.

jarn
jarn in reply to PMRpro

I was down to 2.5mg Pred and Rheumy said to stop & just go with the Tocilizumab. Apparently it is working although I did ask if I should stay with a low dose Pred. haven't so far. Interesting that Rheumy didn't think that Pred was reason for hair loss but think I rely on other GCA sufferers for that info. Yes, am sure age plays a part but genetically my skin has been strong. Anyway, was glad to be able to start walking again and hoping to increase to 45mins each morning. Wobbles getting less and less, but keep my "stick" handy when facing inclines etc. I did appreciate your input re: TCZ and how it only deals with one of the causes. Your advice greatly appreciated. Tx

alvertta
alvertta in reply to jarn

Wow. 100 mg. That is huge!! Most I was on was 60 at the beginning. Glad you have had success. I kayaked all summer. 23 times. And swam. So trying to keep moving. Knees are not good so not a great walker. But my arms work well. Lol

jarn
jarn in reply to alvertta

Well, 100mg only for the first week when they were hoping to save my sight; then reduced to 60mg and downwards

Phed
Phed in reply to jarn

Thank you for your reply, poor you losing the sight in one eye, I do feel lucky that mine was diagnosed quickly having said that I did see 7 doctors in 3 weeks with them diagnosing anything from tooth infection to ear infection, they all seemed to miss the point of the 24 hour headaches and unable to touch my head, luckily the youngest doctor I saw knew straight away what it was and put me on Steroids, they have played havoc with my weight and moonface which I will say is beginning to improve now but the hair is another matter, it feels and looks like straw, I was only saying to my Granddaughter tonight that I need to go and buy a wig which she though was very funny, good luck with your journey as well,

jarn
jarn in reply to Phed

HAha. Yes, the hair gets weird thus the reason that I had hairdresser chop it all off and start all over again! Have never had short hair, so this is scary but hope it works.

Phed
Phed in reply to jarn

I thought my hair would improve as I lowered the steroids (currently on 7mg) but if anything it seems to be worse😥

jarn
jarn in reply to Phed

No such luck; maybe not as much falling out etc but will keep breaking off as I found out. Was tired of looking at the spindly sprouts. Keep it trimmed if you can.

Phed
Phed in reply to jarn

I go every 6 weeks to have my hair trimmed, I was warned about the weight gain by the doctor but I guess he didn’t want to upset me by telling me all the other possible side effects from Steroids. I guess the weight gain was from waking up at 4am and just having to get up for the cup of tea and biscuits otherwise I couldn’t get back to sleep, luckily I have got over that now thank goodness.

Phed
Phed in reply to alvertta

Poor you losing some of your sight in your eye, I did have a few seconds loss in my eye before I was diagnosed, I’m on 7mg of steroids at the moment and just keeping my fingers crossed I can keep reducing my steroids without GCA raising it’s ugly head again.

alvertta
alvertta in reply to Phed

I was there at 9. Then bam. Overnight lost 1/3 of right eye. Brown smudge was the first symptom. Nothing else. Anyway this GCA is tricky.

alvertta
alvertta in reply to Phed

I did the DNA on ancestry. Many relatives on there. Lol.

Phed
Phed in reply to alvertta

I did wonder about doing a DNA to find out where the family originated from , but so many people seemed to think it was a waste of time but in your case it was well worth doing.

alvertta
alvertta in reply to Phed

You would be surprised. Relatives coming out of the woodwork. Lol.

All I can tell you is that my younger brother developed GCA about 5 years ago and since then my sister and I have been diagnosed with GCA and PMR. No signs of it in the older generation. I wouldn't have said our diet/lifestyles were all that similar except that all three of us had been active and sporty prior to diagnosis.

Phed
Phed in reply to Pippah45

Like you my brother and I have no knowledge of GCA/PMR in the older generation and unfortunately when I was diagnosed last year there was no older generation to ask.

Pippah45
Pippah45 in reply to Phed

No older generation for us to ask either but I am sure they weren't diagnosed with either. My older brother has also died and his symptoms were more consistent with Hypothyroidism than any of the things his French doctors treated him for. I was diagnosed with Auto-Immune Thyroiditis (aka Hashimotos) about 10 years ago so before PMR/GCA. I suspect my sister may also have thyroid issues but has not been tested.

My mother had pmr and gca . Her mother probably had it as well but was undiagnosed

I was told by a professor that it is genetic. I fear for my daughter.

It’s interesting to know you were told it’s genetic when so many people seem to think it’s not,I can’t blame you fearing for your daughter I only have GCA and although I only suffered for a short time compared to some people on this sight I wouldn’t wish it on any one.

alvertta
alvertta in reply to Phed

Definitely family connections. I have warned all my Icelandic cousins. If you get flashes in eyes etc run to emerg.

Pippah45
Pippah45 in reply to Phed

My brother was told by his Rheumy that it isn't genetic so he believes that - I don't believe in coincidences on that scale nor do I believe in the medics entirely.

PMRpro
PMRproAmbassador in reply to Pippah45

As I said in my comment - in the strict definition of genetic hereditary disease, it isn't. But there are genetic predispositions - and members of the same family have the same ones.

That’s good you have warned them, The other half wanted to take me up to the hospital when the pain was so bad I couldn’t live my head off the pillow, I know this sounds daft but I was to scared to go incase it was a brain tumour, ( my dad passed away with a brain tumour) if I had been warned about it and how serious it is I would have listen to the other half and gone up the hospital.

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