Hi Everyone,
I go see the rheumy next week. So far, I've just been on prednisone. I had
the whole body cortisone shot, which gave me a lot of movement back,
but didn't help my toes. Then I had injections in my toes & ankle (week &
a half ago) and a scrip for prednisone from my regular doctor - this is all
in the last month - it has allowed me to walk, but doesn't do a lot for the
pain. But we haven't started "treatment" yet. What can I expect? Is she
going to start me on plaquenil? Is that where I want to start? Will I have to
stay on the prednisone, as well? Is anyone on statins (I've read that they
show some promise in trials). Is there anything I DON'T want? It's March,
and they haven't actually done anything for me since this started in
October, and I'm more than ready, even though it's scary. Are there any
things I should ask? Thanks for any advice!
Lee
Lee~
This is a fairly good discussion on predisone and the opinions of it here amoung our memebers. http://arthritisinsight.com/forum/forum_posts.asp?TID=2492&a mp;PN=3
Although a great place to start you definately need to have your doctor working in a different direction long term.
I don't have much time this morning....but read though this topic and do some poking around on the site. RA can progress very rapidly if left untreated. Research different DMARDS and go well informed to your next appointment.
Show early on that you are taking an active role in your treatment. You'll gain early respect from your RD and it will go a long way in forming a positive relationship with a doctor that's likely to be in your life for a very long time to come.
Best of luck to you. I'll look for you more often in the future to see if I might can be more helpful.
Lovie
I would say you will likely be started on a DMARD and the doseage slowly increased. Don't be afraid, it may take a little trial and error to find the right combo of drugs that will work for you. Don't get frustrated, this will take time as well. Most Rheumys will go with standardized treatments that have a proven track record. I'm sure your doctor will go over all the benefits and risks to the drug of their choice. Let them do their work, this is why they are the docs. Although some people have side-effects with certain drugs that does not mean that everyone does, so its a wait and see thing. If you have problems, then something else will be tried.Lee~Try not to focus on the negatives. RA is a serious illness....but it's also a managable one in many, many cases. You'll eventaully learn to focus on the positives and not so much on the negatives. That's really hard to go in the beginning when it's all so new to you and things seem to be so uncertain for you.
Yes; the majority of us will be on medications for the rest of our lifes. I've been at this for quite sometime now....and only once did I try to go without the meds. That was a mistake I learned early on. Even when you begin to feel better; it's likely only as a result of proper medication. Without it you'll quickly turn into a statue. (Just my personal experience)
I managed for many years of weaker DMARDS like sulfersalizine, plaquinel and various antiinflamatories. I rarely if ever had any side affects from the meds. Slowly but surely we've increased as the disease has progressed. Fast forward a good 12 years and I'm on stronger medications like MTX, Humira and various pain killers and muscle relaxers. I suspect these meds are beginning to affect my stomach. Hair loss? None noticable for me. Weight gain? Off and on through the years mainly due to predisone.
Although we can all sit here and tell you our experience it might only do more harm than good. I think often the stuff we are reading causes far more worry than nessesary. Every person is different. Their bodies are different. They'll react a different way to every medication and even to the disease it's self.
There are various degrees of severity as well. It's a progressive illness so the future is rather uncertain for us all no matter how mild a care you may have in the beginning.
For me I've found that a positive attitude and a very strong faith gets me through even my roughest days. Try not to focus so much on the future and try to make the best of the day you are given.
Some think that's hog wash but for me it's helped me live a happy life despite my difficulties. Granted it took me years to come to this realization but it's made all the difference in the way I manage life with a chronic illness.
Try not to get into a patter early on where you sit around all day and think about how bad you feel. Even when you do feel bad make every effort to get moving and have something else in your day besides RA. It's very, very easy to let RA rule your life if you let it. Decide early on that you are going to be in control...not the other way around.
It does get easier as things go along. Easier mentally....not always physically.
I am brand new to all of this myself, but what I think of is my quality of life. I am prepared to deal with medications, but I see how well my mom lives now with her medications after ten years.
There are many many people who get up, take their meds, have a small struggle with morning stiffness and by the time they are on their way to work, feel just fine.
I had a 4 year period that felt like I had gotten over RA.
I'm like that for the most part. I get up everyday (cept weekends
Just because you have RA does not mean you are going to be disabled in 20 years. Yes; there maybe weeks or months where your knees will bother you and you'll get quite aggrevated at the stairs. Yes; there will be times when one thing or another will annoy you to no end...but if you are determined to make a good life for yourself despite your limitations you can do it.
There will come a day when you are at the doctors office....or maybe even at the mall and you'll look over to see someone who has some sort of horrible handicap. You'll say to yourself "This really isn't all that bad". Things could be a whole lot worse.
We all get down. Even those that don't suffer with a chronic illness get down in the dumps and worry about a situation until they drive themselves mad and soon become depressed. We have every reason to get depressed. Let yourself be sad at times....but try to remind yourself of the good things.
Thanks again everyone. I hope next week we actually start doingHello and Welcome!
I know it is difficult to sort out all of the info. Let me first suggest that you go through the posts from the last few weeks and read up on some of the threads about doctor visits. We have just recently touched on this very topic. Also I would like to recommend a very good book from the popular series "for dummies"--"Arthritis for dummies". I picked my copy up in a drug store but I am sure Barnes and Noble has it or can get it for you. It is wonderful.
There are factors which go into the doctors choice of meds based on your medical history, allergies, rate of progression of the disease, and other medications that you are currently taking and ones that you have had in the past with no therapuetic results. Also what works for one may not for another and what makes one person sick as a dog may have no adverse effect on another person. When you read up on the side effects of the drugs you may be offered it will scare the hell out of you. The truth is that the side effects of all drugs are pretty scarey. We just dont think about the more common ones. You do need to know the side effects of the drugs that you take. Just dont let it intimidate you (much). I was really scared when I first started on MTX...in fact I only took half the dose. Then I started with my regular dose the next week. I am not saying that this is what you should or should not do...just that I am a nurse, I give people all kinds of meds all of the time, and I still get stressed over some of the things that RA has brought with it. I had a meltdown the day before I even started MTX. Its okay, its normal, and we all pretty much go through it...but it is like jumping off of the high diving board for the first time. You just have to close your eyes and go for it. Most of the time you go in with a little splash and then you come out and say with a smile "That wasnt so bad, I could even do that again!" Every once in a while though, you do a belly-buster instead. And you cry a little bit. But in the end your still okay.
Hang in there...we are here for ya!
This is a very scary disease. I still don't know if I'm seronegative or seropositive, the test results still haven't come in. My RD says that the seronegative is better to have than seropositive. Is that true. One site I looked on said that some RD's think you can have as much joint damage from seronegative as with the positive. Does anyone know?? I still think like some of you that this is going to go away. I hope everymorning that I will just jump out of bed and away I go. I have only been dealing with this since Dec 05. I can't believe that this is going to be a life long thing. My husband keeps asking if I feel any better and I finally asked him if he wanted me to lie and say yes because I really thinks he feels everything will be back to normal once the meds kick in. I tried to tell him that I don't think things will ever be "normal" again to the degree they were. Am I wrong?
From what I've seen, Jayaz, this IS normal now. It's just another part ofI'm not real sure on the seronegative thing...but I do think it's likely you'll have a milder case....but that term mild is loosely used.
12 years ago I was dx'ed before the blood work even came back from the lab. She was a firm believer in aggressive treatment. Turned out I was "seronegative" but that didn't have much merit with her. She thought it needed to be treated the same either way and we never even mentioned blood work again.
I assume alls been fine all along. Years later I see a different RD because she moved. (Loved her!! Dr. Summers; she moved to Florida) just recently my SEDS rate was increased. My RD sends me a note every time I have a blood test. Pretty much just says positive or negative. Normal....increased; that kind of stuff. This past time it said SEDS rate increased. I call my nurse and she said it was like 35. I asked her what was normal because I didn't even know. She said anything over 20 was considered high. I've since talked to several folks who have far higher than that.
My point is; I really believe that aggressive DMARD treatment early on has bought me a lot of time. Yes; it's progressed....but I think the folks I've heard of that are RF Positive seem to progress quicker than I have. I can't speak for all with negative results....cause I'm not sure that would be true.
I have had symptoms for at least 6 years but none so severe as in the past 6 weeks. When I couldnt walk was when I finally went to a Rhuematologist. I always pretty much new that I had RA, but my logic was that I would never take "chemo drugs" as long as the pain wasnt slowing me down. I should have sought help sooner because I my xray did show some joint damage (very mild) and I am serum negative. I did have tests done years ago in the doctors office and I was refered to a RD at that time b/c tests were negative. But I put it off and ended up not going. It does make a difference when you start treatment right away.I'm off the prednisone again, so I can't walk, again, and all my knucklesFiona, know just where you're comin from. I'm not a young chick by any means, (58), and this disease "knocked me out 2 yrs ago. My bigest problem was that I have severe osteo arthritis, and am also seronegative, so wasn't referrred to a rd for 2 years. I also couldn't do anything. Had to work, so simply didn't do anything else. the fatigue, anemia,pain was horrible. but when I was finally seen by a rd, was dix'd without xrays, blood tests, or anything esle. Hopefully, you'll have an rd like mine. very aggressive, Plaquenil, 2 wks later, 10mgs, mtx (upped to 20, 4 wks later) and then on to remicade. You WILL be better! I honestly just wanted to die, from the pain I had, and the pain I was causing the ones who love me. But I'm very much like my old self. I still have stiffness, and pain (actually today is very bad) but for the most part I have my life back. Don't give up, and don't be so afraid of the warnings on the drugs. Give them a chance.
(((((((mary))))))
IT is an physical therapy nature and safe external use.Look Mr. haishi bu whatever, when you can learn how to speak our language and type English CORRECTLY and then form grammatical sentences correctly then write . And then when you can sell your idea to the Rheumatologists in the US with your cure, and they tell us it is ok, then fine, but trying to sell it here is a really bad idea! While you are at it, just walk on in to the Food and Drug Administration and have them take a look at your wonderful cure and you will not only be a millionare in American dollars, but you will get on the news here in America, you may even make it to the talk shows. BUT until that time, myself and the others here would greatly appreciate it....which means that we would be ever so thankful, if you would not ADVERTISE your cure here.
IF it was a cure, American scientists as well as other renounded scientists around the world (A scientist is a person that studies science, not a fake advertiser( meaning artificial... herbal cures). would have recommended it for Rheumatologists to prescribe to their patients.
We have a serious bone and tissue/immune disorder disease here, we do not need your lies and your sneaky ways. If you were for real, you would have introduced yourself, told us what state you live in...........so where do you live? Tell us that!
We need to turn this person in to the government and to the FDA...whatya say fellow AI group?
Mr.......YOU GO BYE BYE NOW OK?
First off you moron...."""""".i guranente you that. because i have thousands of clinic test result. """"""""""""""
you cannot spell...and there is no such thing as
THOUSAND CLINIC RESULT. Do not...I repeat, do not MOCK our clinical research and medical community. We as patients take great offense when you mess with our Dr.'s ok???????? Stay away you quack( which means a fake or false medical person)
GO AWAY SELL YOUR PRODUCT TO ANOTHER PART OF THE WORLD....we are smarter than to try your cure.
Sorry fellow Arthritis Insighters, this guy is clogging up our site....next option would be to ignore, report and ignore once again. Can he be blocked from the site?
YOU owe the peole at AI an apology! Now when you have the disease, and do the suffering, then get approved by the FDA and my rheumatologist you will be more respected.
sure make posts but dont do it on someone elses post that is looking for advise when theres no real proof that what your doing is real. We saw your first post thats all you need to do, if anyone was interested we would have replyed to you on that one. Quit bothering us. We will listen once the FDA or any other dr says this is a good thing. And also we cant get onto you website to even see what the heck you are talking about....
i will check the web. and you can wait the fda or whatever. and i said post someone to prove is not as dirty trick as you say.