I wanted to walk away yesterday after my first post. I worry the same people will respond in a hurtful way today, but I will make myself ignore them and not even read thier replies whenver I see their names. I do have some questions and I hope some of you folks further along can help me. I waited too long to go to the doctor and I beat myself up for that now (part of why earlier I said I do feel stupid). My husband was ill for 18 months and he was my priority. I neglected caring for myself and ignored the pain I was having in my knees, ankles, elbows hands and hips. I finally went to the doctor a week after my husband died to get something to help me sleep. I mentioned my pain and trouble walking and she did some blood testa nd believes i have rheumatoid arthritis. i was referred to a rheumatoligst and my appointment is next week. I don't know what happens next. I see that many of you are on different drugs. I guess I thought there was one drug to treat this but there seem to be so many. How do you know what to take? now that I am aware, i see many drugs listed in imagazines and on television for rheum.arth. it seems overwhlemling. thanks you for listening.sorry for typos but my hands are very swolen today. millie
Wait a minute. You came in brand new and started blasting people because you felt they (we) were not living their lives in a valuable, worthwhile way. Some were offended by that and as far as I know, you didn't offer an apology. And now you're blasting them again. That's just rude.
I'm sorry for all that you've gone through, I can only guess at how difficult it's been. And now to add RA to it, well, my heart goes out to you.
But some obviously thought you began posting here with hurtful words. They probably won't ignore you from here on, they will probably give you the benefit of the doubt. Maybe you'll do the same.
A good place to start is www.arthritis.org .
Alan
I am sorry to hear about your problems and your husband. I do hope when you see the doctor he can help you. I am new at this too and I haven't been put on any of the drugs most are using. So I am sorry I can't be of any help with that. Wishing you luck in becoming pain free.I don't know what happened earlier but I hope we all can start fresh.
I feel so badly for what you've been through. Don't beat yourself up about not going for an earlier diagnosis. Women especially are known to be so busy taking care of others that they ignore their own needs. That may be what happened to you. The best advice I can offer, being sort of new at this myself, is read all you can about your disease, post lots of questions here for some very good, informed advice from the veterans (they really know their stuff) and cry on our collective ciber shoulders when you need to. Your doctor will most likely be the one to decide which meds you should be on, but that doesn't mean you just blindly go along. Read up on all the main RA drugs so you will have some idea of what questions to ask at the next visit if he starts prescribing. If I were you, I'd at least give the doctor's advice careful thought and try what he suggests, since he's been through this with many patients before and most likely knows what's best for your situation. I think I'd only be concerned if he wanted to start the really heavy duty drugs right off, without starting down the lower rung of the meds ladder first. Others here will be able to advise you further. Good luck and take care of yourself now. It's your turn.
Hi Millie -
Every time I see your name I wonder where the other Milly went. Anybody know if Milly is OK?
There are basically 2 schools of thought in the autoimmune wars - the MD's that believe that your body started 'attacking itself' and the people the believe we are fighting an intracellular infection that hides in the white blood cells; the very cells your body uses to defend you from bacteria and viruses. I'm in that camp.
We treat ourselves with low doses of antibiotics (Antibiotic Protocol). If you want more information about that lurk at www.roadback.org. And get the book The New Arthritis Breaktrhough by Henry Scammell available at Amazon, your local bookstore can order it for you, or some libraries have it.
There is also a ton of research out there that says our diseases can come on after or during an emotional event. Mind over matter is very important in keeping a positive outcome and lessening the path of these diseases.
There is also a lot of research on vitamins and minerals. While I'm not in the 'diet camp' I do believe there is waaaaay to much ancedotal evidence that diet can severly change the course of this disease.
I'd start reading, and reading, and reading! The Internet is loaded with 'miracle cures' - so be wary - but there is hard science out there that will eventually make sense to you. You just have to start. :-)
But it is your body - if you decide on a med - if your doctor is unwilling to help you the way you have chosen to try at first - dump him! Find another! Because it comes down to it's your body and it's your life.
Hugs,
Pip
P.S. If you come across interesting research - there are science types on this board. Me and my peeps in the AP camp; Jasmine and others in the other. If you post it, you'll get opinions. :-)
Hi Millie. OK, I just reread the thread that caused some angry posts to be directed at you. While it doesn't change anything I said in my post above, I think you need to forgive the fact that some people were a little put off by the strong tone of your very first post here. It's usually not a good idea to start a relationship by criticizing others. However, with everything you've recently been through, I think it's understandable that you might be feeling angry and vocalize some of that. It sounded to me like you were sorry for what you said. No matter. I'm glad you're back and I hope we can help you come to grips with this lastest difficult challenge in your life. There really are many people here who will wish you well and want to help.Newbie,
I'm glad you have an appt w/ your Rheumie next week. I'm sure they will take some blood, do a thorough exam and maybe schedule a baseline xray or MRI. There are so many meds that one can possibly be on. Your doctor will consider your health history, the progression of your disease and many other things. I hope you get some relief soon. I am looking to change meds too because I can no longer afford Enbrel. I was doing really well on it too. Sometimes it takes a while to get the right med, so don't get discouraged if you have to switch.
Good luck!
Phats
Phats -
Can you conact GS? She has info on where to apply for money to get some of the meds?
Pip
I know GS has more sites for help w/ meds then I do but here are some till someone gets ahold of her.
Ok I thought I had more but I guess I dont. Google medication assistance programs and you should come up with a bunch
Newbie11linccn, you are wrong about me. I did return to my initial post and ask for forgiveness. i don't remember your name as being hurtful earlier, can't remember you at all to be hones tand i don't feel lke going back to read the earlier thread. howver, you are hurtful now and i am happy to those who emailed me in support and gave me other forums to go to where there are not people like you and lev and that other girl (anna? i forgot). in my initial post i wrote that those who are engaging in these petty posts could be using their time more valuabley. i was not judgemntal and numerous people agreed i was not both on the forum and in the 9 emials of support i got. obviously i hit a nerve with you (wonder why) and you got worked up. I don't care to be honest. I find hte few people who are so ugly and hostil at this site to make it not worht my while anymore (you are a big part of that, though i know it doesn't matter to you, just thought i'd tell you). I don't care to read any responses to this because so many of you are so hurtful. i have found another forum to participate in and there are no posts wtih the meanness that the few of you ugly people inspire. moderated sites are a GOOD thing and now i see why. The ones of you so vocal about not wanted moderated sites are the ones who are so ugly (for the most part). of the 9 emails I got, 7 of the women have found other forums where they are happy, they just check in here (but don't post) periodically to look for newbies like myself that were made to feel unwelcome or uncomfortable. to those who DID welcome me and took the time to write to me, I do thank you and I'm sorry I can't overlook the mean people. It's not worth it to me to have to worry about every post I write if one of the ugly people will respond. thank you and good bye. and if you want to post something mean (like don't let the door hit you on the way out), don't bother. i'm not reading and I don't care about you or what you have to say.
one last thing before I go. when you get up from your computer chair and walk away from the site next time, ask yourself if you feel better for comieng here or if you have a sense of uneasiness in you. that is what i did. i realized i fetl worse for beign here because of the mean ones and the constant talking about htem. i actualloy felt BETTER before i found this site. so ask yourselfs that each time you walk away. if you leave feelign inspired and good becaues you helped another, that is great. if you don't, there is a problem
milly
Newbie - I only read your post so I apologize if I am repeating what has already been said. Your rd will do blood tests and see if you test positive for RA. If you have a good rd (rheumatologist) they will not only use your blood tests as criteria for determining if you have RA.
If you are diagnosed with RA, they usually start out with plaquenil or methatrexate (mtx), or sulfas (can't remember the name of that drug). They wait and see if those help you and others that I probably cannot recall. Arava is one they use if you cannot tolerate mtx. If you still are not improving then they start talking to you about biologics. They seem very scary when you read the literature on them but they have helped many of us.
I am sure some one else will or has given you advice but this is my experience.
Welcome to the board. Please try to ignore all the bickering. Try a new screen name so we can get to know you better. Many people start out calling themselves newbie. I hope you get comfortable here. There is a lot of nastiness and meanness that did not used to be on this board but there is a lot of that going on in the world right now. Just rise above it and go back through back posts for good information. Also, be deligent about keeping your questions on the first page. Eventually they will get answered.
AGAIN, WELCOME
Sadly, I just read your post before this. I hope you change your mind. I tried hard to answer your question and make you feel welcome
like the others have said, base line blood work and xrays. i would listen to what your dr has to say about what he/she thinks is best for your treatment, and then do some research on the options.
good luck with things and i hope you find relief soon.
I commend you for having the cajones to be honest with this group and the courage to come back and post questions after getting a beat down!
You might want to make a list of everything that has been bothering you to take to your first appointment with your rheumatologist. Write down things like how long you feel stiff in the mornings, the joints that are bothering you, things you used to be able to do without second thought that have now become difficult (i.e. buttoning shirts, brushing your teeth, opening jars, etc.)
As for the drugs - there are lots of them and it can definitely seem overwhelming at first. I think prednisone and methotrexate (MTX) are a couple of that it seems like almost everyone gets on first. I'm currently on MTX and Enbrel, which seems to be working for me. I still have some flares, but not near as bad as what I had before starting the meds. Do some research on the drugs. The internet has a lot of information available as do the people here. I think as a group everyone has been on everything at one point. Also, research the AP stuff - a lot of people on here are doing really well on AP and they can probably provide you with a lot of valueable information. Just make sure you look at all the options available to you. You'll need to take the route that works for you, whatever that may be.
I hope you continue posting! Try to ignore the negative and focus on the positive. There are a lot of people on here that are only looking to help you out. I was only diagnosed this past April so I'm fairly new to the disease and still learning my way, but I'll provide whatever info I can.
Hope you're having a superfantastic and comfortable day!
take care
Alexander - Of course pred. I lived on it until I was diagnosed. I just got off it by choice. I am doing all I can to try to keep a healthy body as can be as I never give up on getting better. We are making one room just into a yoga/meditation room. I cannot wait until we are doneMillie:
My condolences. I'm also a fairly recent widow.
How do you decide? It's sort of a crap-shoot, Millie. The doc will prescribe one thing, if that doesn't work in a reasonable time, you will try another, and another. Sometimes it takes a couple of drugs to try to get the disease under control.
I urge you to go to the arthritis foundation website and especially look at this link: http://www.arthritis.org/lets-talk-ra-landing.php