First of all, I agree absolutely with Jenni. I also feel that it is esssential to be armed with ALL the facts about RA - however unpalitable they may be.

Well, here goes. RA can be and sometimes is life threatening and can be terminal - whether this upsets or not, it's a fact. I have two very dear friends who will never be sufficiently recovered from RA to lead what we term normal lives. I'm sure Jenni will not mind me saying that in her case, RA is a very definite threat to her life. Many of us also know our lovely Gwenda who spends a life of absolute pain, dosed up to the eyes on morphine and unable to tolerate any RA drugs. She has been unable to move without assistance for 18 years - so how bad does it have to get before people say "OK - it doesn't get any worse than this"

Two very eminent professors of rheumatology, both of whom I have had the pleasure of hearing at conferences, have likened RA to "cancer of the joints". One described it thus. Think of a circle. At the top you have RA - ie the body produces too much tumour necrosing factor which causes the joints to be eaten away and eaten away until, as in my case, there is nothing left. At the bottom of the circle is cancer, where the body does not produce enough TNF which causes the tumour to keep on growing. Different sides of the same coin. This is why we take anti TNF drugs to slow the process down.

If you doubt what I am saying, do some research on the internet and see for yourselves.

I'm sorry, but I get very annoyed when people with no medical qualifications rubbish what has been said by Consultants and professors of rheumatology.

I'm ranting again, Julia xxxxxxxxx

We love you just the way you are Jean, don't ever change !

Julia xx

I agree with you Jewelrhi. There is no comparison whatsoever. As Shakespeare said "A rose by any other name would smell as sweet" Does it really matter what it is called? It won't hurt any less.

It helps enormously, Clare. Thanks for putting it so well.

Hi everyone.

I have already started to call it rheumatoid disease. What a difference it makes. When people asked before and I used to say rheumatoid arthritis they would say something like "oh dear! that's painful." Now when people ask I say "I have rheumatoid disease" and they say "oooh! What's that?" Which gives me a chance to explain what it really is. A lady asked me the other day and when I said I had rheumatoid disease she asked if that was arthritis and I said that arthritis is only one of the symptoms. She wanted to know what the other symptoms were. So, not only does it explain what RD is. It raises awareness. Try it everyone and see what response you get. You will be amazed.

Jean/Jenni

Thank you for your posts. It is a shame that we could not all watch the conference that Jean attended when the Consultants discussed RA being the other side of the coin to cancer. Maybe then phrases like "medically inaccurate" could be disproved. I would also like to point out that RA does not just attack joints. It can also
damage heart tissue, muscles, eyes, central nervous system, and blood vessels.

Quote taken from the web:-

"On average, life expectancy is somewhat shorter for people with rheumatoid arthritis than for the general population. This does not mean that everyone with rheumatoid arthritis has a shortened life span. Rheumatoid arthritis itself is not a fatal disease. However, it can be associated with many complications and treatment-related side effects that can contribute to premature death. Although rheumatoid arthritis most often affects the joints, it is a disease of the entire body. It can affect many organs and body systems besides the joints. Therefore, rheumatoid arthritis is sometimes referred to as a systemic disease".

Jackie
xx

Hi

Thank you for your input Clare, it's both interesting and helpful to hear the NRAS view on this. Clearly the change of name is not going to happen, for the reasons you explain, but as you say a lot can be done by us, as members, to raise awareness of the reality of this disease.

Although using the word 'cancer' is highly emotive and medically incorrect, RA, an autoimmune disease, can be equally serious for some. For those diagnosed since the introduction of anti-tnf drugs about 10 years ago prognosis in majority of cases will be very good; many can now expect to go into clinical remission with the right type of treatment. However, for those of us diagnosed donkeys years ago when the only available treatments were those that controlled the symptoms, anti-inflammatories, steroids and pain killers, and had no effect whatsoever on the progress of the disease, it can be a very different story.

So when people suggest RA should not be 'likened' to 'cancer', in terms of its seriousness, please consider those of us who are living with badly damaged joints that can only be corrected by surgical procedures (I currently need 5 and am not fit enough for any!), heart, lung and eye problems and all manner of other stuff that comes with long term RA as Jenni mentions. Very fortunately most will not reach this stage ... but, some of us already have.

Lyn x

Hi

i am a little late in joining in this conversation so sorry about that I am like a lot of you I am 55 and when i say i have RA some will say my Granny had that or if they know nothing about it and are real friends they will ask you to explain what it is ? I have been around it for years my dad had it and I saw it get worse and worse on him till the Drs said it took his life but as my rummy Nurse said that was 14yrs ago and we have a lot of new meds now and she did say this had not happen in this last ten years so we are moving forward witht he drugs Thank goodness.
i also agree with everyone it is not a cancer RA is bad but not as bad as watching someone with Cancer.
all i can say now is sorry for going on but i feel better now I have said this.

thanks for listening

Love to all
Audrey.