take som deep breaths. It IS scary...but there are very good treatments. i would suggest you look into and disc with your rheumatologist starting a BIOLOGICS, often given together with methotrexate. Tell us a bit about your symptoms.

Biologics risks are terrifying to me. I want aggressive but relatively safe treatment. I'm already pissed about probably having to get a flu shot this year as I am apparently opening myself up to infections, right?

Biologics aren't dangerous, contrary to what you have read. They list side effects that many experienced who had cancer, and needed huge quantities of the drug to get rid of the cancer. We take minute doses compared to that, so less issues.

For me, the disease is so much more dangerous than any drug I have ever taken. I have been on many biologics over the years. Some didn't work, some failed, some had side effects I could not tolerate, but deformities, being bed ridden, and the thought of the disease attacking my heart, lungs etc, is much more scary for me.

I'm sorry you are just coming new to this disease. I never worry about blood test numbers. I was sero-negative to start, so zero everything. But I was severely disabled, and that is what counts. Are you in tremendous and debilitating pain? Are you more or less incapacitated? Are you in pain, but you can still push through it? Is the pain annoying, but you can still do most things?

Those are the questions that need to be answered to decide treatment. I have a sister with MS, and she rarely has symptoms. At one point, they did her RF, and she was 4 times higher than me, but asymptomatic for RA, and still is. They do not know why, but since it doesn't bother her, why worry? As for me, not so much. The last year and a half, I have had terrible trouble getting control of the disease, and I've been watching my hands and feet visibly deformed. To say nothing of all the shoes I can no longer fit.

Anyway, welcome to the group. I hope I have not scared you. Let us know how you respond to treatment, if you feel down, or just want to talk generally. We still have a few people left over from the old DS. Never mind, not going to open that can of worms again.

My Rf number is 285. I was just diagnosed a year ago and nothing is helping. I know of no one else with a number that high. Soft hugs,
Deb

Old DS?

Seaschell; omg. Are you in terrible pain?

Thank you Marlene. Hands and feet so far pain but not deformed.

I know exactly how you feel I was just diagnosed aug 23. My CCP was 160 and RA factor was 36. I start Methotrexate on Oct 3. I have to have a procedure on Sept 19 so have to wait 2weeks to start it. It is all overwhelming since it just came on all of a sudden. Just my fingers on left hand swelling and pain is not to bad yet. Just scary not knowing what to expect or what will happen.

Hello, and welcome to the board. I don't know how much the numbers matter about the outcome of the disease being aggressive or mild. I do know that ra is totally unpredictable. My ccp was 250 and my rf was 51 if I remember correctly. The first year was the hardest for me by far. Things have gotten much better after treatment and hopefully the same will happen for you. Just be patient, it takes your body a while to get adjusted to its new normal and a lot of these meds we take are slow to get started. Good luck and feel free to lean on the board for support and expierence.

Thanks all. Sounds like browns fan and I are starting this journey together. I hope my doc understands/believes me when I say how much things have deteriorated since I saw him 2 and a half weeks ago. If not, I will be looking for another doc asap.

The last time they checked RF and anti-CCP my numbers were 591 and 205. That was when I was diagnosed a year and a half ago, and that I "…had probably had RA for years" before my first major flare– although I have no significant radiological damage.

Like PW39's reply, my symptoms have been under control (thanks to MTX and a biologic) for almost a year and they don't do these tests anymore. Despite my apparently high numbers, there are sero-negative people with normal test results but with worse symptoms than I had. I was told that these tests are basically just useful in making a diagnosis and are otherwise not meaningful in indicating response to treatment. I have heard that some people think that higher numbers MAY mean more severe symptoms but I can't say if that is true or not.

seaschell, someone surpassed me (sorry you did), my ra # was 283. You'll be okay SusieG, you have to go through the trial and error of meds to see what works for you, what you can tolerate and the correct dosages. I have a feeling the process wouldn't be as long were it not for insurance company demands on things to do it cheaper first to see if it works.

This is the part of the CCP I don't really understand. My CCP doesn't give an actual final number it just shows >250. With all the numbers I've seen on this post & the old post that were way below 200 you'd think I'd be completely bed ridden but although the number is severe, my symptoms are mild at worst? After 2 1/2 years on MTX ending @ 2.5mg I've gone into remission. I'm considering taking the CCP test again to see where that number lies now. Does it change or once severe always severe?

Thank you all so much. I see my doc next Tuesday to discuss meds, but he confirmed that he would probably start me on metho after discussing all options and risks. In the meantime, called in a script for meloxicam which I started today.

hope the nsaid meloxicam works as a pretty good bridge for you. get a good book at the library on RA also that will go over all of the early dmards or disease modifying anti rheumatic drugs many of which you will most probably cycle through in an early diagnosis before biologics are brought up. methotrexate is multi decades old for ra treatment. you are in huge company :). knowledge will feel like power to you so you can ask questions back. just take it one week at a time. ra is chronic. the rheumatologist will see how you respond first to the dmard and you could respond wonderfully. the worse part of being a newbie is horror stories :). i've been on most of the nsaids. i find them helpful as an added tool. did he give you pred also to see if your symptoms disappeared?

welcome
glad you are here

depot