mscrowbar, I just wanted to try to answer your concerns about
deformity a little bit - and the effect the different drugs you may be prescribed might have.
The anti-inflammatory drugs (i.e. Ibruprofen/Advil etc) will reduce the amount of damage caused as long as they're taken, by suppressing the inflammation caused by the disease, but to what extent depends on the individual. The disease modifying drugs like methotrexate and leflunomide (and many more) work to reduce the activity of the disease by changing the processes that control the disease in our bodies. The newest class of drugs, biologics, aren't really drugs at all, but synthetic proteins called TNF-blockers, that work like antibodies to 'mop up' the 'TNF which causes cartilage damage in the joints. The TNF-blockers generally have the best effect in most people, but they carry with them a certain amount of risk which generally means they're not a first line approach to treating RA.
You have fibromyalgia, which *will* make your arthritis feel much worse than it is. I can distinctly feel RA and Fibro pains, and I can differentiate between them - but the amount of pain I feel in my joints does not reflect the amount of inflammation or damage that is being caused. This is likely to be because fibromyalgia effectively amplifies our Central Nervous System messages which control our pain sensing (this is why we have an increased responsiveness to painful stimuli, but higher pain tolerances...). It is a really unlucky combination to have, unfortunately it's also not a particularly rare combination. I've had RA for a few years now and Fibro for about
18 months. The latest doctor I saw has decided he thinks there's some undiagnosed third issue in my spine, but he hasn't convinced me of this just yet :)
When you say the disease spills over from the joints - really, RA isn't a disease of the joint, it's a disease of the immune system that _mainly_ effects joints (by releasing chemicals that stimulate our cells to attack our joints) - however increased fatigue and tiredness, cognitive dysfunction and other side effects can manifest as well. Autoimmune disorders are described as being on a spectrum, from Multiple Sclerosis effecting the nervous system at one end, and SLE (Lupus) at the other, but there is blurring between diseases close to each other on this 'spectrum'. One of the MOST annoying things about
having RA, is when people find out and ask "Where? ... My X has arthritis in her Y, so I know what it's like". My answer tends to be "everywhere".
I don't know about
the rashes, I get a sort of plaque psoriasis on some joints if I miss a couple of Enbrel injections. (Drs can't decide if I have Psoriatic Arthritis or RA with Psoriasis, but the latter seems more likely to me.)
In summary, I don't think it's something that should cause undue worrying (but hey, we don't get a choice in what worries us, do we?) - make sure you're happy with your Rheumatologist, that you're listened to, and have access to appropriate medications (this is a unique challenge in England), and deformity can be kept to an absolute minimum. Of course, it's an individual thing, so the extent that one person or another is affected may largely be down to chance. The best way to beat it is knowledge and understanding. Learn as much as you can about
the disease, how it works, how people live with it, what the different treatment options are, and their drawbacks.
Post Edited (JayBespoke) : 11/10/2011 10:08:05 AM (GMT-7)