Please can someone/anybody define severe RA? thankyou

[Hidden]

Hi Fiona, I can only speak for myself here and that is I've always been told my RA is chronic/severe/aggressive anyone of those.Why? well my Rheumatologist as never been able to get proper control of it, I've never had a remission and all the drugs I have tried either don't work or stop working after a while. Not being able to get proper control of the disease is when the joint damage starts, I've had Triple Arthrodesis (fusion of the three main joints) on both feet after just 3 years of a proper diagnosis, I also had bone grafts where they took bone from my shins and put into my feet this was done to replace the missing bone that had been destroyed by the RA as bone as the ability to regenerate itself. I also had a smaller op done earlier this year on one foot and another to come on the other, my feet are now held in position with a combination of pins and screws. A procedure that worked well for me not totally free from pain but I can get around better.

Have had small op on both knees, had synovectomy operation on both wrists plus work on tendons.had a three operations on my elbow including a Total Elbow replacement.

Have lost count after 60+ joint injections including fluid removal from the joints, had endless intravenous infusions of prednisolone.

What I'm trying to explain is the problems my Rheumatologist as encountered in treating my RA and the damage the severity of it as done to my joints. Nowadays treatments are different and the approach to treating RA as changed over the years, Rheumatologists and scientists through research have discovered different approaches and as we know many new drugs are available quite different to many years ago, I say many years I'm only talking the early 90's.

I remember having pain so bad that I felt my life was not worth living as there seemed no end to it, I couldn't even bond with my own son, in the end he was the one to live for I had to be strong and strong is what I have had to be.

This is only a small part to describe how severe my RA was my Rheumatologist is very good to me and even now looking at the next drug I will be trying.

Don't get me wrong I get scared too, I've had an anaphlactic shock to one treatment and that was a very frightening time.

Hope this explains a bit about what severe RA is.

Take care

mand xx

[Hidden]

My understanding is that 'severe' is aggressive, progressive (chomping it's way round the body) and resistant to being easily suppressed / medicated. Internal organs and fibrous tissues are also involved and things like eyesight affected.

Most of the DMARDS etc state whether they are for mild, moderate or severe conditions. Have only met one person who's RA responded immediately to the first DMARD (mtx) and is symptom and now medication free but have met quite a few folks who's RA is well controlled on their meds.

It seems to be a bit of a lottery as to what version you get and what reactions you have to meds etc - but ultimately we're all different and unique and have different and unique disease patterns so there is no such thing as 'normal' with this disease's path.

Cece x

[Tricia-P]

Hi Fiona,

I think that severe RA has to be when you have got to the stage like Mand and jennifer Lyn as well have had to have joints replaced fused or just removed. On the other hand RA is described as a chronic disease as it has no cure there are drugs that can keep it at bay but that is not given as they sometimes fail or the body gets used to them and they just don't provide the benefit any longer.

if I were to say that my severest RA period was when I first became ill, I could not understand what was happening to myself that overbearing feeling of fatigue and pain; I clearly remember thinking that I wanted to die but I didn't and now it's not so bad. I also think that what one persons severe is another persons chronic or even just bad. Thought provoking.

Best wishes

Tricia P x