I am confused about disease severity can someone help me because I have read lots of posts and i still can't figure it out. I know you can have mild, moderate or severe disease but does this mean that it is mild to start with then because the disease progresses it gets moderate and then when you've had the disease a while it gets severe because I read a link about it it it looked like the Mild moderate severe were actual stages in the disease. Do you know what I mean, it drives me nuts trying to figure out - if you have mild disease does it mean you might stay mild or does it mean you are in the early stages which are mild and once you've had it a while it will get moderate and so on? Sorry to waffle on but I would love to know! thanks guys.
Flint, it isn't a foregone conclusion that your RA will get worse. That's the problem, there seems to be no way of knowing. I was shown a chart which divides into 5% severely affected, 75% moderately affected and 20% with little affect. I think fewer people are severely affected these days due to prompt diagnosis and immediate, aggresive treatment to stop the progression.
Flint, the explanations I've seen out there are very confusing. There are four stages of RA which are based on function of symptoms. This is where progression comes in. Then there are discussions about the severity from original diagnosis. Thus, you get confusion. I'm still searching for an adequate explanation.
But I think even in the course of one patient's illness that a doctor would classify them differently at various points. For instance, I started out very severe with heavy med doses at the very beginning. Then I had a couple of years when the meds worked and I regained so much of what I had lost. At that point, I think my doctor would have said I was moderate to mild. Then, it came back with a vengence and that's where I am now. I don't even have to ask whether or not I am severe. But I do have high hopes that my body will start responding once again to treatments. I think others have experienced this as well.
It seems to be true that if you are treated aggressively in the early stages of the disease you have the highest chances of getting your body into remission. Then, it becomes an art to keep yourself there. There are some people who have an initial flare up of RA and they recover never ever having bad symptoms again. Others bounce up and down. Some of us are holding on by our fingernails, digging in to stop the slide down the dangerous cavern of progression.
The trick is finding what your own body reacts best to. I find that eating right and any kind of exercise I can manage makes tremendous differences in how I feel no matter what meds I am on. The worst thing is not being treated adequately because that's when permanent damage occurs. And, little things can have big impacts. For instance, when they realized I had developed sleep apnea and later high blood pressure and they treated those, I improved substantially.
But now I'm struggling with the addition of neuropathy and losing the meds that supported me for so long. That is discouraging. But we just don't give up. Technically, I might be in remission from RA right now. In many ways, I feel better being off the MTX and the biologics. Other days, I would just beg for them again. But it is giving me the opportunity to learn new methods of dealing with this disease. If or when I can go back on the RA meds, I will have a better understanding of where I'm at and what I need to have optimum treatment.
Hope is the best dish you can serve yourself. I know that when I got my cane, it was a depressing moment. As I was being measured for my knee braces, sitting in the room I could look out across the display floor and see the cane, the walker and the wheelchair. It some ways, it seemed doomly prophetic. And, I suppose it is since I have now experienced all these aids to mobility.
But now that I am here, I have to say I love my walker. It is such a strange thing to embrace. But it helps me get out, to move, to still live. And soon, I may be able to assign it a spot in my closet and not even think of it any more. But right now, it means freedom for me.
We cannot help wanting to know what our individual prognosis is. The unknown is so scary. But the doctors can't really predict our pronosis either. The best we can do is work the achieve the highest results possible for us. For some, that is complete or nearly complete recovery. For others, it is stopping progression and learning to live in spite of the limitations. Reach for your highest possibilities. Stretch beyond the limits of your hopes. And dream, always dream it can be better than it is today.
When you hear the terms mild, moderate, or severe there are actually several definitions behind it. Most of the time in a general sense the rheumatolgist is referring to disease activity. The number of joints involved, how many diagnositc criterea are present, how much inflammation/damage is present, severity of bloodwork, pin levels, response to medication, how far its progressed and speed of progression. Do you do that little check list at every appt..you know the one that asks your pain and fatigue levels, how difficult it is to perform daily activities. That page adds up to a HAQ score which also leads the dr in a direction.
In the true clinical sense there is a very specific criterea set for disease progression. In addition there is another table that accounts for functional status. Disease progression does not always coorelate to functional status.
Here is an interesting link.
http://www.hopkins-arthritis.org/edu/acr/acr.html#class_rheu m