There have been some very good discussions about different approaches to meds- AP vs biologics, Pain meds vs NSAIDs, etc. I know several people who used AP's road and did well and others who did not do so well. Some folks have had RA for years and still work, while others have had RA for a much shorter time and are totally disabled.
Is it a function of how aggressive a form of RA we have that determines our fate? Or is it the drug combo we use? Is it a positive outlook?
Sometimes I feel that with all pills we take, all the diets we use, all the exercise we try, that in the end it only changes our destination by a few degrees.
I'm not trying to be negative, its just that there are times that I feel we are not wholly in control - kind of like stearing a boat as it goes over the waterfall.
That's a nice turn of phrase, Justoday, and not so long ago was exactly how I felt. Since then I now believe in miracles, the power of positive thinking and the power of prayer. If we add courage, persistence, optimism and agressivness to the mix, I believe we stand a good chance of gaining some control. Regular visits to this board can be very uplifting for the help and understanding that's here. There's likely to be a combination of therapies that will work to some degree for you, it's just a matter of finding it, no matter how long it takes. When the pain diminishes or is subdued altogether, steering that boat will become a possibility. Good luck to you - Des.
I think that the problem is that we need someone that is looking over a broad range of patients and getting feedback as to what is working/not working.
I wish that they would to a national survey of people with autoimmune disease. In there I would like to see questions on:
Have you had monoclueious (Epsein-Barr)? - had it.
Have you had hyphori bacteria? - had it.
Have you possible been exposed to Lyme disease? No, but it's a big problem here.
Have you had a traumatic physical or emotional incident shortly before you started having symptoms? Oh, yeah, baby!
Have you been in a traffic accident recently before getting symptoms?
Did you have a major infection before getting symptoms?
How active were you before getting sick?
How active were since getting sick?
What medications have worked for you?
What ones haven't?
What adverse reactions have you had?
How soon into your disease were you treated with such and such medication and what was the result?
How many doctors did you have to see before you got your diagnosis?
Do you have more than one autoimmune disease? - Oh, you betcha.
Do you have family members with autoimmune diseases?
Something like that. I wish we had a national conference between the Rheumatologists and the patients. And, I'd like them to start some huge database of information on our symptoms, progression and response to medication. I think that would be an eye-opening experiment.
These Rheumys seem to be all over the board with how they treat patients. The only national orgarnizaton we have is the Arthritis Foundation. It's not substantial enough.
Maybe we could send this to the conference?
I would also like to see the doctors focus on our whole bodies instead of just one particular aspect. I obviously have something else going on in addition to or maybe even besides ra. When your rd comes in doing the happy dance and says how proud she is that she has your disease under control and you are sitting there with velcro shoes on because your fett are to swollen for anything else and sausage hands, something is just WRONG!!
I agree. I see about 5 different specialists and it just gets confusing. My PCP is supposed to be the ring leader and he's a dufus. Well, he's not, but his NP is.
Michele, your rheumy just sucks. I'm sure you've said, but I forgot. What does your PCP say about all this? Also, the swelling in your feet, could it possibly be because you need a dieuretic? I was having a terrible problem with that. It caused my feet to swell, go red and hurt to touch them to the floor. The Cardiologist is the one to put me on the diueritic and Potassium (you have to have Potassium). Everyone else overlooked this very simple solution. I was retaining water, a side effect of the medications. It even made my chest hurt.
You can try a simple experiment with getting and OTC diueritic, but be sure you also get the Potassium and see if it helps at all.
But I really think getting other doctors is crucial for you. You have every right to be mad.
Deana- There was a national study of autoimmune diseases, I believe it was called MADGC. My family was set up to be part of this study because my grandmother had Lupus, my sister and I have RA, and my sister's son has juvenile diabetes (nice set of genes?), but they have since lost funding. Imagine that.
Michele- I agree 100%. There was an article I read several years ago that noted that RDs should focus on the symptoms more than the blood work. The article noted that their studies of symptoms were more corelated to prognosis than all the blood test. When I first got dx'd with RA, it was because the RD made note of the swelling in my toes, and then put me on prednisone while we waited for the blood tests to come back. The tests showed high RF and anti-CCP, but the sed rate was normal. The RD said that was good because it showed no signs of swelling? I noted the discrepancy to what he actually wrote in his notes and what the blood work showed, and he just politely smiled and went on. Funny world.
Maybe we should come up with our own form and take it into the doctor with each visit and make sure that they give us a copy each time they leave. I also have a problem with not knowing what they are actually writing in my chart.
Figures a study like that would lose funding. I think Hillhoney's post is good. I might try to do that if I can work in one more thing.
DEANNA WROTE: I also have a problem with not knowing what they are actually writing in my chart." And, I'd like them to start some huge database of information on our symptoms, progression and response to medication"
Deanna..there is a huge database like this. Its run By Dr Frederiick Wolfe and the National Data Bank on Rheumatic Diseases. They have been in existance for over 20 years. Anyone with RA,PA.SLE, Fibro can sign up to do surveys. You do the surveys on-line twice a year..they take 30-60 minutes. Hundreds of researchers from around the world utilize the data collected by the NDB. And Dr Wolfe and the NDB also produce dozens of papers annually.
http://www.arthritis-research.org/
Cool. Thanks buckeye. I'm going to find the time to do this one and the one that Hillhoney posted.Thanks Buckeye
I knew that. I even filled out a questionaire for them. Could not for the life of me remember enough to even google for it.
Thanks again!
My biggest problem with a lot of the alternatives is they lower your immune system. That is a scary thought.
A co-worker of my husband's son has Crohn's Disease. He is in his early twenties as has battled it for many years. He was on a lot of medication the suppressed his immune system. Well, he caught a nasty bug. Mayo Clinic gave him less than 1% chance to make it. He did by some miracle and is home now after months in the hospital. He is still recovering.
I read all I could on AP and felt it was worth the fight. I'm glad I did it. This theory has been around for a long time. I don't know what it is with these rheumys but my AP doctor who is a GP just shakes his head at the whole thing. Minocin what he puts his patients on. The last time I was at my rheumy, I was the only one in the waiting room without a walker, wheelchair or cane. It scared the crap out of me!!
Becky
I was reading your post and you may want to go over to
Arthritis Foundation website. They are offering something like you all have been mentioning. I hope this will help you with having better communication with your doctors.
Let's Talk RA Communication Kit
http://www.arthritis.org/afstore/singleproduct.asp?idCat=&am p;idSubCat=&idproduct=3797