Heart failure and temporal Arthritis patient

Hi

My names is Jim age 72 From Belfast

Diagnosed with heart failure in May 2017 and earlier this year was diagnosed with Giant Cell Arthritis

Anyone with similar illnesses is welcome

[MichaelJH Heart Star]

Hello and welcome to the forum! Although I know something about heart failure I know nothing about Giant Cell Arthritis. It's a bit late now but hopefully someone with knowledge will be along tomorrow.

[Celtic]

Hi Jim, in case you are not already aware, there is a very active forum on HealthUnlocked called Polymyalgia Rheumatica and Giant Cell Arteritis (PMR and GCA). They are long term linked autoimmune inflammatory illnesses, with some patients having either one or the other whilst others can experience both. I have had both. In the case of Giant Cell Arteritis, some patients have heart involvement. You will find a wealth of information on the aforementioned forum and a National Organisation, PMRGCAuk, with a list of support groups/meet-up groups around the U.K. Hope that helps.

[Hidden in reply to Celtic]

Thank you Celtic

It’s been a long 2 years since I first got I’ll in May 2017

I had a torid time at first when I lived in the Irish Republic and I decided to come back to Belfast where my family still live

I had a lot of stress moving back which didn’t my heart conditions

I’m beginning to suspect my main illness could be the inflammation of my arteries as my consultant confirmed that is what I have

My arms and shoulders are weak and lifting even small bags of groceries can make me ill with pains in my arms

I suspect GCA has been caused by the strenuous work I was involved in before I retired !

[Rose54 in reply to Hidden]

Hi

I have PMR since 2015 on Steroids since then

Sounds as if pain in your shoulders may be PMR

and yes it is possible for the Heart to be involved if their is inflammation in that area

As others say join PMR /GCA group as excellent source of info

[Hatchjd]

I worked as a nurse in ophthalmology for a while and saw several cases of temporal arteritis, also known as giant cell arteritis. It is an inflammatory condition of the arteries on the temple which causes swelling and narrowing, restricting blood flow. It can affect the scalp , neck and arms and cause blindness if not treated quickly and appropriately, usually with steroids. They would test for this in people with sudden unexplained decrease of vision. I am not aware of any connection of this to heart failure.

[Hidden in reply to Hatchjd]

It can affect any artery, not just the temporal artery. The problem has been that patients haven’t been screened for aortic and other involvement so it’s difficult to know the incidence.

[Hidden in reply to Hatchjd]

To Hatch

As a nurse you have been trained and know the medical names and terms relating to these illnesses

I have not

and I can only comprehend my illness by my own experience and what my doctors tell me

But as I am the custodian of my own body I can feel and “look” into my body and at this moment I feel the hurts inside me

I feel my neck and the now dull pain

of my neck hernia,

I feel the soreness between my shoulder blades where I hurt myself lifting the lintel in 1991,

severe injury never goes away and rarely heals especially to bone

I feel at the moment my shoulders ache with dull pain, when in the past in my work I strained my hands, my arms and shoulders while inserting copper wire into electric motor stators

I went to my doctor at the time about the pain I was enduring in two places in my chest behind my brests

He told me it was caused by the nature of my work

Just to add how I felt and experienced when I had the first pain over my left eye

I did not suffer the danger of damage to my eyes probably because I had my eyes operated on for cataracts

I am at the moment enduring little bloody scabs forming on my scalp which come and go, they go after washing my hair but soon re-emerge

[Hidden in reply to Hidden]

You probably didn’t suffer damage to your eyes because the blood vessels that supply your eyes weren’t affected, it’s got nothing to do with cataracts.

The most important thing to understand about GCA and other types of Vasculitis is it’s the inflammation in the blood vessel wall that does the damage. Blood supplies oxygen and nutrients to tissues, inflammation interferes with that. That’s why if the very small blood vessels are affected the kidneys or lungs can fail. In GCA it’s the large blood vessels, over time the inflammation can cause them to narrow or balloon, it’s the inflammation in the blood vessels and the tissues they supply that causes the pain and other symptoms. We can develop “ collateral “ circulation, if the large blood vessels to the arms are blocked off then over time we can develop an alternative blood supply. Many people with GCA find their arms etc ache when doing things, that’s because the muscles are working but don’t have a good enough supply of blood to cope ( very simplistic explanation! ).

[Hidden in reply to Hidden]

Hi Tynemouth

That’s very detailed and technical

I am just a patient with no medical knowledge st all and I don’t even know what an aorta is, i would have to Google that

When you said you had Bechets Desease I thought you were just another patient

Without being rude, can I ask, are you a member of the medical profession

[Hidden in reply to Hidden]

You aren’t being rude! I was a nurse but was forced to take medical retirement 3 years ago because of my disease. I had no knowledge of Vasculitis, it took me 4 yrs to get diagnosed and treated properly so I did a lot of reading and tried to learn as much as I could in that time.

The aorta is the main blood vessel in the body, it supplies blood to the heart and then takes it away from the heart to supply the body. Think of it as a motorway with all the other blood vessels as A roads, trunk roads and very minor, narrow roads supplying it. GCA can affect the aorta causing the blood vessel walls to ballon and weaken ( called an aneurysm ) or to become stiff and blocked ( called a stricture ).

What l have learned from my experiences as a patient is that we need to learn everything we can about our diseases, how they affect us and the best treatments. We can’t assume that Dr’s and other medical professionals know the best way to treat us, especially when you have a rare disease like GCA.

[Hidden]

I was diagnosed first with heart failure in May 2017 and between then and Dec 2018 I suffered from considerable periods of cold sweats often at night and day with my tee shirts were soaked in sweat

It was only when I was diagnosed in early 2019 with Temporal Arthritis were these symptoms linked to TArthritis or GCA

I was first diagnosed with heart failure and an irregular heart beat in 2017 but my HF nurse told me in early 2019 my irregular heart rhythm had improved from accute/severe to moderate

But since I was diagnosed with GCA

has my sweats begun to ease up after going on steroids

[Kristin1812 Heart Star]

My husband has Giant Cell Arteritis.

V different to Arthritis!

My understanding, from listening to various medics and reading the excellent Health Unlocked forum (mentioned above by Celtic) .........is ......what links a group of illnesses together is a compromised immune system. When that happens infections and other autoimmune problems are more likely to develop. If Giant cells develop, their growth is not stopped by a compromised immune system. The risk is of sudden blindness as the blood flow to the eye (apparently, always only one eye) is reduced or stopped.

Steroids work a treat, but are given initially at high doses and appear v difficult to reduce later. Most of the above forum seems to be about how to get off them.

As others have said. I’m not aware of any particular link with heart disease. Be interested to hear of any data.

[Hidden in reply to Kristin1812]

It’s not so much a compromised immune system as an overactive one. The immune system perceives the lining of the blood vessels to be the enemy and “ attacks “ it causing inflammation. It’s the inflammation that causes the symptoms and damage. We don’t yet know why this happens, infection may play a part as can stress and genetic susceptibility. The cause is probably multi factorial.

Prednisolone and other medications used to treat suppresses the immune system and stops it attacking the blood vessels.

[Kristin1812 Heart Star in reply to Hidden]

Thanks Tynemouth, for this. It makes much more sense. Only one further query........surely steroids have a part in reducing inflammation, as well?

[Hidden in reply to Kristin1812]

Yes, absolutely they are a potent anti inflammatory. 😀

The newer Biologic medications have revolutionised the treatment of auto immune disease as they work directly on parts of the immune system and target B cells, tumour necrosing factor, interleukin etc.

[Kimkat]

My Dad was diagnosed with temporal arteritis in late 70’s, I remember he had problems with heavy sweating and blocked vision, he went to his gp and was admitted to hospital immediately and was told that if he had left it any longer he would have lost his sight in his left eye. The interesting thing here is that he eventually ended up with a thoracic and an aortic aneurysm, which unfortunately took him from us 11 years later but reading the above comments, there seems to be a link between the two and compromised immunity. I myself have suffered with thyroid problems, I’ve had two partial thyroidectomies and last year had radio active ablation, I also had to have a pacemaker fitted for 1&2 heart block, which makes me wonder if it’s all linked.

[Hidden in reply to Kimkat]

Sorry to hear about your Dad, fortunately the treatment of thoracic aortic aneurysms has improved and now there is a minimally invasive operation called TEVAR to repair them. They still don’t routinely screen people with GCA for thoracic aortic aneurysms, most people don’t realise that they have one as they don’t cause symptoms.

Thyroid problems can be auto immune in nature, it’s well known that all auto immune diseases can potentially affect the heart ( diabetes, Rheumatoid Arthritis etc ). The heart doesn’t like inflammation, there have been a few drug trials in the past few years looking at whether immunosuppressant medications can help heart disease.

[Kimkat in reply to Hidden]

Thanks for your reply, the abdominal aneurysm was the one that actually gave my Dad the most problems and in the end, it was too late to operate by the time they realised what it was unfortunately.

[Hidden]

Hi Grasshopper,

I have Behcets Disease which is another of the Vasculitis variants ( Giant cell arteritis/ temporal arteritis is another Vasculitis type ). Vasculitis literally means inflammation of the lining of the blood vessels and can affect any size of vessel, Giant Cell Arthritis affects the large vessels.

Traditionally Dr’s were concerned with the temporal arteries and the very real threat of blindness but Giant cell arteritis can affect any large blood vessel or artery, including the aorta.

Have you had your aorta scanned? My form of Vasculitis has caused an aortic aneurysm as well as affecting the very small blood vessels in my heart causing angina. It’s not unusual for Giant Cell Arteritis to cause problems with the heart including heart failure and angina or heart attack. Have your Consultants made the connection between the 2 conditions?

[Hidden in reply to Hidden]

Good morning everyone and thank you all for your contributions

To Tynemouth

Yours an interesting post as you know a lot about the medical side of arterial inflammation and the variations that do occur

I’m in a learning state at the moment and every patients input can only help us to grasp all of the parameters in a complex illness which I suspect is greatly influenced by our work and lifestyle

during our working years

Thanks to Rose Kimkat Kristin and Hatch

Each had their story to tell and maybe our points made here can help the professionals to advance their knowledge of these complex illnesses

I would just like to add that I suffered two spinal injuries in my time, one in 1982 when as a result of strenuous physical work grinding metal for hours, two days later I had spinal pain from my left side of my head to my left heel

This lasted one day and half when I lay on the floor in my apartment unable to move

I then got to my feet slowly and drove to the City Hispital in Belfast

To cut a long story short, I suffered an injury to my neck a hernia called a prolapse disc

I was in hospital again in 1991 after lifting a heavy concrete lintel which caused me to develop pheumonia

but caused by a torn muscle across my back and I suspect it could have affected my heart

I think you understand the point I am making, old injuries suffered during the years when we are strong and healthy come back when we are older with inflammation around the damaged parts of our bodies

Well that’s a debating point at least!

[Hidden in reply to Hidden]

I think that we all want answers and to try and understand what has happened to us. Giant Cell Arteritis ( GCA ) and the other Vasculitis types are all rare, complex diseases, there are no simple explanations.

Lots of people have back pain, injuries and indeed injuries to other parts of the body yet GCA is rare. It’s something more than the injury, what makes a person’s immune system react in this way when another person’s doesn’t? It’s got to be a mix of things, genetics, the micro biome, life experiences, gender, ethnicity, geographical location, occupation etc all have a part to play.

GCA is a “ systemic “ disease, it can affect more than 1 blood vessel or organ although it most commonly affects the temporal artery, aorta and other large vessels around these. It’s a systemic immune response, not a localised one to areas of old injury etc.

If you have never had a CT or MRI scan looking at your aorta I would ask for one as problems with the aorta don’t always show on Chest X rays or echocardiograms.

[Hidden]

How is this relevant to the conversation and where is the evidence base that the ICS-NHS Diabetes Prevention Programme stops people developing auto immune disease?

[Hidden]

“ potentially be better “

That’s the issue here, as someone who lives with a complex, rare disease with multi morbidity I am fed up with people “ suggesting “ non evidence based solutions. Why don’t you give up gluten/ carbs/ take turmeric/ buy a Crystal etc etc, if only it were that easy.

You know nothing about me and my lifestyle either pre or post ill health. There is a genetic component to my disease, it has been absolutely down to chance. Nothing that I have done in a lifetime of exercising, watching my diet, having exemplary BP, cholesterol and blood sugars has been my fault. You may say that reducing insulin production reduces inflammation but provide no evidence that this is the mechanism at play in any of the Vasculitis variants.

Have you got nothing better to do than troll people on here when it doesn’t appear that you have any of these diseases yourself?

[Hidden in reply to Hidden]

Tynemouth

After reading your replies to “still concerned” I feel you are taking too much authority onto yourself

As far as I have read tonight on Google

Quote: “there is no well established trigger or risk factor”

it is still not proven that GCA is either caused by genetics or some sort of immune system deficiency

It is still not proven by the medical professionals

but interestingly they have noticed a link to a shingles virus

And interestingly I received the shingles vaccine in November 2018 after which I became ill at Xmas with headaches and was diagnosed in late Jan 2019 with GCA

You cannot force people to believe your theories until they are proven beyond doubt in medical trials which take several years!

[Hidden in reply to Hidden]

I am taking no authority here.

All the Vasculitis variants ( there are over 18 different types ) are auto immune/ auto inflammatory diseases which is different from immune system deficiency. That is a proven fact.

Research shows that there are multiple genetics involved whereas 80% of rare diseases are usually mono genetic ( only involving 1 gene ). What they don’t know is what genes are relevant for each person. Behcets is associated with HLA B51 but recent research has shown that ERAP 1 may play a factor too.

As for the shingles vaccine you have to bear in mind that association isn’t causation. The best example of this I can think of is the MMR vaccine and autism where no link has ever been proved. The shingles vaccine is given to people in their 70’s which is also the peak age for developing GCA. Why doesn’t everyone who gets the shingles vaccine not develop GCA? There has to other factors involved surely?

The bottom line is I have no theories, I was supplying an overview of the issues that people who study Vasculitis think are relevant. What I do know is that knowledge of our disease is power, especially understanding the research. Still Concerned has posted no research that Vasculitis is caused by insulin resistance. To put it into context many of the Vasculitis variants were fatal until prednisolone was developed. Every year people die of Vasculitis, go into kidney failure, heart failure etc etc.