Hello, Im new to
the message board here, and i really need some advice. Im hoping
someone can help me out. To make my story short, Ive had rheumatoid
arthritis symptoms for about 5 years. I finally went to a Rheumy 2
weeks ago, she diagnosed me with RA . I had labs and hand exams done,
all normal. so i went back yesterday and she started feeling my back,
it hurt, she thinks i have spondylitis to i guess. so she starts
talking about enbril and methotrexate. shes crazy and i didnt even get
the chance to ask her questions. I think she figures that cuz im a
nurse i should just know everything. She said call me in a week and
tell me what u wanna do. I feel so pressured to start something. She
was kinda pushing the enbril because that will help with AS and
methotrexate will not. i did my research and the sideaffects of both
seem overwhelming. I just wanna say screw it and not take anything. Id
like to hear other peoples experiences on the drugs and your knowledge
about these diagnoses. I know i have to take something to prevent this
thing from getting worse. But im deathly afraid of new drugs and
sideaffects. Id so much appreciate some advice.
Hi there and welcome. I was the same as you with Meds and side effects ( really scared) I eventually tried a multitude of drugs and unfortunetly I didnt get good results but theres a lot of people on here who do get great relief from their medications. Side effects are common but the ones you read about are the most serious and rarely happen. My arthritis has gotton worse because of not taking anything for years, its all trial and error to see what will suit you but doing nothing will only advance the disease. I have eventually settled on humira so we'll just have to wait and see. Good luck with whatever you decide. Oh yes I have a friend on enbril and she said it is her magic medication. lol
JoJo, (I'm also a nurse, btw, and feel just as "in the dark" as you do about some of this stuff. It's different when it's your own body: it's harder to be objective, I think.)
It sounds like your Rheumy isn't sure you have AS, but wants to treat for it anyway? I don't know enough about AS, so maybe it's not simple to dx. Maybe this is just the protocol for treatment: give it a whack of Enbril, and see if it responds.
Maybe a second opinion?
Maybe, just like RA i think, cuz my labs and xrays are fine, it could be the same with the AS i have the pain but the xrays make check out ok (havent gotten the results yet). I questioned the doc and she got defensive and said well i can only go by my expertise and yer symptom pattern. Im glad she is aggressive with this, but angery that she thinks she doesnthave to explain this to me because im a nurse.
JoJo,
It sucks that she isn't answering your questions. Maybe if you write them down and hand her the list? I was in a similiar drug to take or not to take situation a month ago. The RA diagnosis hit me like a Mack truck, and since my numbers were very high, I was advised to go after this agressively. I chose to trust my DR. and go for it, the risks down the road far outweighed the possible side effects. They can give you antianausea drugs to help with the stomach stuff and they will moniter your kidney/liver function closely. Read up on AS and RA, educate yourself and then you have to make a decision. It really is up to you!
best of luck &n bsp; &n bsp; &n bsp; &n bsp; &n bsp; &n bsp;
The best way to treat RA is aggressively, before permanent damage occurs to your joints. Enbrel has been my miracle. I know the "potential" side effects are serious, but as someone has already said, they are not common. I've been on enbrel for 6 months and the only side effects I've noted are minor headaches, which excedrin takes care of, and dry eyes, which I have drops for. Otherwise, my disease progression is supressed, so I know that I'm not losing any valuable joint tissue at this time. If I can't stay on enbrel forever, then at least I've significantly delayed the deterioration that would surely come without treatment.
I would recommend that you try enbrel as well. It doesn't take long to know if it will help you. I literally felt total relief within the first week. I stay away from obviously ill people, and am diligent about washing my hands, to avoid any kind of infection that might cause me to have to go off of enbrel. So far, it's been great, and I feel like I did before my first symptoms, over 9 years ago.
Best of luck to you...and don't let your doc assume you know as much as he/she does. This forum is a GREAT tool for finding answers, suggestions, solutions, and upbeat people who refuse to lay down for their disease. It's very uplifting to read the stories of people who share your same frustrations and chronic pain.
I'm glad you're here. Keep us posted on your progress!
I also have neg labs but diagnosed with RA and maybe PA and Spondylitis. I was also hit like a mack truck but waited a year to start a DMARD and after 3 months will have to add Enbrel. The MTX only helped some. It is hard to decide with neg labs and x-rays but it is too late when the x-rays become positive with damage so I also suggest starting the meds and you will know in 3 or 4 months for sure.
The MTX is how my doc diagnosed the RA as it would not help even some if we were dealing with another type disease.
Do you have swelling or redness? I do which helped with a dx. Many people have neg labs at first and sometimes they never turn positive.
Take care,