heart problems

the first thing I asked my rummy doctor was will this affect my heart as I has heart problems as a child they said no it does not affect the heart

I also said would I end up in a wheel chair they said most people do how has this effected you all?

[cathie]

I wonder where you are?! My mother had RA from the 1950s until her death in 2002. She only needed a wheelchair at the very end of her life. She didn't take a lot of exercise and could have been stronger I think. She avoided putting on too much weight, which I think helped. I think people who take up swimming do really well, I wish I felt well enough to do that.

[Beaches2]

Hi

I'm a bit surprised your rheumy said that at your first appt. mine said the opposite! He saw my face drop when he said he thought it may be rheumatoid, and said "don't worry, it's not like it used to be and you won't end up in a wheelchair with deformed joints"

I know some people use them for periods following surgery etc but as far as I'm aware many manage to stay reasonably mobile with modern treatments etc.

A colleague of mine has had the disease over 30 years, has had lots of surgery during that time for damaged joints as treatment in the early days was not so good, but, she is still mobile and has a busy,active life.

Best wishes to you x

[earthwitch]

My mum is 83 and has had RA since she was 13 or 14, and didn't have the benefit of a lot of the meds that are available today, and yet she can still walk around the house. In the last couple of years she has reluctantly started using a wheelchair very occasionally if she is going out and its going to be a long walk, and she does use a walker now, but given that she has had this disease very severely for 70 years thats not doing too bad. Unless you have something else going on with you other than the RA that might also contribute to limiting your mobility, then I would think it was more likely than not that you wouldn't need a wheelchair, and your doctor was being unnecessarily negative.

[francherry]

Hello, I was told that if my RA was uncontrolled it was not good for my heart health & it was better for my heart to take the RA medication to get the disease under control. Although I found the idea of being on such powerful medications scary the alternative (uncontrolled RA/RD) was worse. Having been on Enbrel since the end of January it has dampened down inflammation in my hands and the erosions have stabilised (I have erosive RA). I have learnt that it affects everyone differently and that one person's experience of a particular drug (and of RA itself) is different to another's. My rheumatologist has always been positive that they will get me on a treatment plan that's effective and once the disease is fully under control I really hope to be as active as I was previously. The prognosis should not be bleak nowadays with modern treatments and new drugs being developed all the time. The main way RA/RD affects me is extreme fatigue and painful joints. I'm doing a mixture of 1) medication 2) gentle exercise 3) healthy diet with regular treats 4) talking therapy 5) mindfulness meditation 6) resting and pacing to manage it, but everyone's different. All the best x

[wishbone]

I'm surprised your rheumy said that.

Eight years ago I had a mild heart attack approx 2 years after I was diagnosed with RA, which left me with a slightly damaged heart. An angiogram could detect no obvious reason for my heart attack. I'd been told that RA inflamation could cause heart problems, so I asked the cardiologist if that was the reason. He said no because my RA was inactive at the time, which to me means it can in some cases if not properly controlled.

[jazie]

I have had RA since I was 26 years old (14 years)

For the last ten years I have used a wheelchair outside, but can walk short distances with a stick indoors.

My RA started in my ankles and knees. Now it is in a lot of other joints as well.

But when I read articles or speak to others with RA, the majority of people don't use a wheelchair.

I believe my wheelchair gives me the chance to do things I wouldn't otherwise be able to do.

I am able to take my dog for a walk and go for days out with my children and lead a more 'normal' life

[mohikan22]

No wanting to hijack the thread... But just caught how rapid and progressive your ra I'd jazie. .is this similar for all ra sufferers? ??? Are we time limited for what we can do??

[nomoreheels in reply to mohikan22]

Morning mohikan22. Maybe this will answer your query about time limitations

cks.nice.org.uk/rheumatoid-...

It explains procedures for GPs with patients with suspected RD & how important it is for quick referral.

Hope this helps.

[jazie in reply to mohikan22]

Every one is different. From what I have read there are many people who have improved greatly after finding the right medication for them.I don't know how long I had RA for before being diagnosed.

My condition does vary like most peoples.

[oldtimer]

There seems likely that uncontrolled inflammation can increase the risk of cardiovascular disease. By the same reasoning, if you can control your RA, you should lower this risk.

When I first started with RA over 30 years ago, it was assumed that I would be in a wheelchair soon. About 15 years ago I met the consultant that first saw me and he was very surprised that I wasn't! And although I am temporarily using a wheelchair, I should be out of it and mobile after my leg plaster is removed in four weeks time.

I have always been treated aggressively and exercised hard after the initial flare has subsided. Keep as active as you can!

[cathie]

Remember we're all different

[Hidden]

Hi lucindajune,

As Cathie says you are all different and so how one person's RA affects them may not be the same for another person.

Typically RA affects the joints but it can sometimes affect other parts of the body such as lungs, eyes and heart .

I have copied in a section of our article "What is RA" for you here:

More than the joints can be affected in RA:

Other parts of the body can include: (but these areas are not affected in everyone with RA):

Eyes - dryness, inflammation

Lungs - fluid, fibrosis, nodules (rare)

Skin - nodules, ulcers

Heart - fluid, nodules, ischaemic heart disease

Blood - anaemia, low counts

Your blood vessels and RA

Rheumatoid arthritis is itself a risk factor for heart attacks and strokes. It is therefore important that you consult your general practitioner and your rheumatologist to prevent these complications from taking place. This is done by controlling the activity of RA, treating risk factors such as diabetes, high blood pressure and high cholesterol. If you are a smoker, you must make a very determined effort to STOP. For information on how to quit smoking, please visit the following NHS website: nhs.uk/smokefree

the full article can be found here :

nras.org.uk/what-is-ra--wha...

It may be worth having a chat to your GP about this lucindajune,

Best wishes

Sally

[trianon]

I've had severe RA since I was 2 - 55 years! I've had hips/knees replaced plus other surgery. My joints are very deformed (not so many drugs around when I was younger) - I only use a wheelchair when I go out, so no you won';t necessarily end up wheelchair bound.

[Tinwoman2]

I was diagnosed at 2 also. Then again at 16. My Dr said that I'd be in a wheelchair before I turned 20, but I'm not.

Now I walk (with a friend) between 2-3 miles 3 times a week. I still mow too. I have some bad days too but I keep on trying to stay mobile.

Christine

[Beaches2]

Hiya

No it's very hard not to look on the internet and worry yourself sick and we have all seen the pics! Always an elderly lady with deformed hands.A lot of the info is out of date now anyway thank goodness!....best info I think is probably on the NRAS site here!

I also think once we have the diagnosis we also tend to think the worst and pick up on the "bad" stories,there are lots of people quietly managing this condition and getting on with their lives.

Let's hope that before too long we will be among them x