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Rank: Newbie
Groups: Registered
Joined: 1/1/2013 Posts: 9
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Hiya,
Do you know where I can find out more about heart complications with RA? I know there is increased risk but I am not sure what of. My mum died from a dissecting aneurysm of the aorta when she was 49 and the autopsy was inconclusive in establishing whether this was from a hereditary cause or from trauma at some point during her life. As I had not been diagnosed with any autoimmune diseases at that point I did not look further into this.
She was never diagnosed with RA but did have osteoarthritis due to physical disabilities, however, she did seem to go through bad patches with her arthritis (very similar to mine) and, looking back, may have suffered with a mild form of crohn's so I wouldn't necessarily rule it out. Apart from my RA, I am in a low risk group so am generally not taken seriously when trying to find out more info from doctors as the doctors who may have the expertise don't know me well enough and assume I am a bit panicky and a hypochondriac, particularly as mum was never diagnosed with these illnesses. Mum's medical history also gives a lot of other risk factors for heart issues but the autopsy seemed to indicate it was not caused by any of these.
I would like more info about how RA can affect the heart so I know whether I need to push some sort of proper CV monitoring but am struggling to find much. Any ideas where I could look/who I should speak to?
Thanks
Sarah
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Sarah - I don't have any personal experience, but my first look would be through the NRAS info pages. We have people on here with heart issues but t's been very quiet since Xmas, so they are probably away or something. Hope you get some useful insights - you say that your Mum had lots of other risk factors, I guess those can have a big impact. My own Dad died at 47 of a heart attack, and when I reached that age I got very worried, but he too had lots of risk factors (smoking, fatty foods, no exercise!!) - now I don't let it bother me, I stay as healthy as I can and just let nature take its course and hope for the best. There was a thread on here a while ago about annual heart checks - does anybody remember the details? Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Sarah
I do know from other members of this forum and one lady who is no longer a member that RA can affect organs as well as bones. I believe it can affect your heart, lungs, eyes and the list goes on. I am sure that it has been talked about on previous posts so you may be able to search and find some information.
Can I suggest that you speak to the NRAS helpline as they will be able to give you further information and maybe put you in touch with someone who can talk to you on a one to one basis.
I think I read somewhere that there is an initiative possibly being started where all RA patients must be given a thorough yearly "MOT". At the moment my GP thinks it is the Rheumy's team responsibility and vice versa. I think the emphasis is being put more on the patient to shout up and say what care they need rather than waiting for the medical team to get around to it.
Hope someone can help you with further information.
Take care
Jackie xx
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Rank: Newbie
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Joined: 1/1/2013 Posts: 9
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Hiya, thanks for your responses - I have searched under heart on here but not found the answers I'm looking for yet.
On other sources (I've looked at so many I can't remember where but it could be the main NRAS site) I have found that we should have annual heart checks but this seems to be bp, cholesterol bloods etc. High blood pressure is hereditary in my family so that is monitored anyway although mine tends to border on low rather than high.
I have tried asking GP and they were willing to do tests but had no idea of what tests to do so picked some random bloods and send me for an ecg and told me to find out what I needed and let them know. Unfortunately nurse doing ECG also had no idea what tests could be necessary but didn't think an ECG would help and so far I am failing miserably at finding out what I need.
I will give NRAS a call when I get a chance to see if they have any more information or they can point me in the right direction.
I do understand why doctors can't know everything about everything but it is so frustrating!
Sarah x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Hi Sarah At my last appointment in Nov last year my rheummy nurse told me that I should get my cholesterol checked. I asked my GP and she was happy to send me for a blood test. It turns out I have high cholesterol so she put me on a low dose of statins. However, I do accept that I was eating a high fat diet so am taking steps to rectify that- hard worK  as I love cheese, chocolate, cakes, biscuits and pastries! I have high blood pressure but that is being monitored. To add to the mix, my ankles get swollen. I've got a history of heart disease in both my mum and dad- dad had 2 heart attacks and a quadruple bypass .I also suffer from stress so in all honesty, it might be that none of my problems are due to RA at the moment but maybe the combination of it all might mean that I am more at risk. These things seem to have started in the last 5 yrs since I was diagnosed with RA but I can't be sure that there is a link- it could be that there is an underlying problem and it would have happened anyway! Next week I'm going to have an echocardiogram as a slight heart murmur was picked up. As I understand, that tests the flow of blood through the heart and is more useful than the usual ECG. I don't know if patients can request one- I was referred by a hospital doctor.It might be worth asking your GP. I've also been referred to a cardiologist so i will ask them about RA. Unfortunately it's not until March so I can't pass on any info to you at the moment! I hope you can get some answers soon. Maria
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Sarah
Forgot to mention- apart from already having high blood pressure- all this came about because I went to A&E ( told to by GP practice nurse) with palpitations, breathlessness, chest and jaw pain. It was treated as a suspected heart attack. They did all the tests there and decided it was a panic attack triggered by stress. The doctor there found the heart murmur and he made the decision to refer me to cardiology. Not that I'm recommending you do the same!!!
Maria
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Sarah
Welcome to the forum!!!!
Last year there was something on the NRAS homepage about how we are at greater risk of having heart problems, strokes, lung disease and various other things. I have recently started anti tnf's and last Friday I had my first assessment. i asked the nurse about this and asked why we are not given a yearly check for all of this. She said that patients years ago would be more likely to get these problems, but now they treat RA differently the risk as gone. She told me that years ago drugs such as DMARD's were only given when bone damaged had occurred. If a patient was having a bad time with a flare they would be admitted to hospital and put on bed rest until it calmed down. Things now are so different, especially now that anti tnf's are being used. She also said that we are monitored so much that if anything was wrong they would pick it up and deal with it straight away. She also said that it was men who were more likely to develop problems than women.
But after she said all of this she did say that one of the consultants (not mine), is doing a trial with some of his patients and they are being monitored for other issues that RA can bring apart from damage to bones. Depending on what the results are it may then be offered to all RA patients at the hospital. The consultant is a Professor at Nottingham University and does alot of research.
I have been told by one of my GP's that if they think I have anything wrong with me related to my RA they will get me fast tracked to see a consultant at the hospital.
Hope it's helped.
Paula x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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I get an annual check at my GP practice, as RA is what he terms a "chronic illness," and it is his policy to do a "MOT" once a year, plus a drug review on all his "chronic" patients. He does it for people over 60 too. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Kathleen, I really must wear my glasses more I thought you'd said you had your animals checked at the GP! Lol The heart thing- there are troubles with colesterol and heart troubles, alongside other organ troubles aren't unknown There's amyloidosis of kidneys etc The other problems has been that ra patients tend to be less fit Take steroids and other heavy meds Causing heart troubles as a side effect Hope you are doing ok today how to be a velvet bulldoser
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Rank: Newbie
Groups: Registered
Joined: 1/1/2013 Posts: 9
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Thanks everyone - managed to find out that mum's problem is very unlikely to be linked to RA which is great.
Sarah
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