Hi anjuli,

yeah RA diagnosis is tricky sometimes. Boy, you have been through it. Sorry to hear all that.

There are some blood tests which help, but RA diagnosis is done by a dr.'s opinion as much as any test. There are xrays and most of all , there's your sypmtoms. One woman I know said her dr. treated her to see whether RA medicine worked and that's how she was diagnosed. Pretty back door, huh?

The genetic marker is not definitive, either. You will need to keep seeing a rheumatologist or get second opinions until you get answers. Be encouraged not to give up trying. If you do have RA (or anything else) you need to get treatment for it. So you have no choice... What would you tell a friend, right?

It took me awhile, too. Some of my story is on my blog. You can find it at www.rawarrior.blogspot.com  if you like. Hope you get clear answers soon, Kelly

anjuli

5/25/09 7:14am

Thanks for the support, Kelly. I do appreciate it. And I will read your blog.

 

anjuli

Becks

5/28/09 12:05pm

We feel your pain. Keep reading about it and learning about the disease. The latest issue of Arthritis Today has some great articles in it.  Also see the CBS special on a possible new treatment for an off-label med that sounds very promising.  Sometimes if they can halt the progression of the disease when it's still in the early stages & they call it mild inflammatory poly arthritis then you will never fully develop rheumatoid. My primary care physician told me you can have false negatives when they test the RF, but not false positives.  I've been doctoring for poly arth 4 years and still don't have an RA diagnosis.  They often times figure it out by how your symptoms respond to the multitude of various meds available.  Sometimes I think they don't want to put a diagnosis of RA because of how it could affect your future health insurance eligibility (pre-existing conditions).  But look at this clip and stay informed.  Take articles to your doctor.  Sometimes we find out about treatments before they do.  "Those who suffer much, know much" .  Good Luck!  http://wcbstv.com/topstories/lo.dose.naltrexone.2.732830.html

I was in complete and total agony for over a year - numerous specialists "couldn't" figure it out, because I was sed negative. I could not dress myself, walk up one stair, and ended up with severe damage in both my feet, as well as hands and minor damage in 75 joints.  I just had my first corrective surgery for my feet. 

I finally found an very, very old rheumie, who diagnosed me just by looking at me, although it was several years before I found the right combination of meds and went into remission. (Of course the disease continues, but much slower and without the pain!).  I later read somewhere it can take up to four years to show up sed positive.  During that time, you suffer horribly, as well as destroying your joints.  So be aggressive if you have red, swollen joints, that are hot and hurt so badly you can't move.  Iritis is just one form of the disease - my cousin lost an eye to that form, so make them take you seriously. I just read about a man who had a whole family of severe RA patients - mother, grandmother, sister, etc.  He had no sypmtoms except very bad hoarseness - turned out he had a nodule in his throat.  Although he had no other symptoms, they treated it seriously.  Be glad you don't have full blown RA, stay away from triggers like abuse, and get some meds so that you don't lose your eyes.

Rosella

5/28/09 3:49pm

What is your "right combination of meds" that ended your pain? I cannot walk right now due to unbearable pain in my right leg, near my knee.

I was diagnosed with RA about 5 years ago. I'm on Enbrel injections but it only seems to help my hands to not swell up or get stiff.

Sincerely,

Rosella

rosekoeller@yahoo.com

Angela53510

5/28/09 8:33pm

I take methotrexate 25mg weekly injectable. Having just been recently on and off both my meds for surgery, I know know exactly what they do. Methx helps me have energy. I am not exhausted by noon. It attacks the over-activity of the auto-immune system, I presume. I take daily injections of Kineret. It is my magic bullet that stops the flares, about 98-100%. It is very expensive, but my provincial medical plan pays almost all of it - about $18,000 a year. Yikes! The other thing I do is I eat very carefully - mostly vegetarian with a little fish or white meat chicken breast occasionally - lots of fiber, no white sugar, flour. (My husband called it a hippie diet when he first met me, and made me go off of it. Then I got sick, and he "allowed" me to go back on it, which meant cooking two meals to meet the needs of hubbie and kids. Now he is pre-diabetic, and guess what? We are eating only one meal - my tried and true hippie diet of natural foods, nothing processed, low carb, low sugar, fat etc. I guess I won that issue! (My theory is we should eat the food that God made, as close to natural form as possible - not the food than people make in factories, to make money.) I also take loads of vitamins and minerals. I think the food we eat is grown on depleted soils with too many pesticides. Even if you get organic food, the chemicals are so locked up in the ecological cycles.(Like DDT in the Arctic, and it has been banned for at least 40 years!) I also grow an organic garden in summer, with lots of flowers - beauty is important! I don't take any herbs. I worry about interactions. I know the zinc keeps me from getting colds, and the Omega Oils are also anti-inflammatory. It is also necessary to exercise. If you are having an active flare in a joint - then DON'T. Most of the damage I have is because I "pushed" through the pain when I was having bad flares. Joint protection is essential. So if your knee hurts you - do weights and upper body stuff. If one knee doesn't hurt do leg lifts with ankle weights, but leave the bad one alone. Walking doesn't work at all for me, since my feet are so bad, and my knees don't track properly. But I ride a bike year round. I have a trainer and I ride inside in the winter (long and cold where I live) and outside in the beautiful sun, wind and sometimes cold on good days the rest of the year. I also depend totally on God. I have really conquered my depression and fear realizing that God is in control, and whatever happens, He is working things out for my good. Ultimately, He is the healer too - He guides and directs us, and sometimes He uses the doctors, and tells us to live sensibly. Get enough sleep, don't be extreme, don't drink or smoke - not because it is so sinful, but because it is so hard on your body! I also lost a lot of weight, by careful dieting, which the exercise helped, of course. My life is not perfect, it never will be on this earth, but I certainly feel good, and I am able to be very active in my church and community. I also play flute, which really makes me feel good, and I sing, when my voice isn't in rough shape like right now, because of my recent surgery. Whatever happens, I am confident that God will see me through - even if I never talk again. (I have been on Kineret for 4 years now. I understand that some of these biologics stop working after 5 years. So if I have a year left, I will try something else. I understand there is something called rifluximab, which has been very effective. You can google it for more info. I tried Enbrel and it gave me very bad headaches. I have liver issues from too many years of Tylenol and Reactine, so Kineret clears through the kidneys,(most of the TNF's clear through the liver) and other than site inflammation the first year, no side effects!) So that is a long prescription, and self discipline has been a long learning experience. I kept track of everything for a few years - exercise, flute playing, prayer and Bible devotions etc. until it became a habit. It was kind of confining, but now I feel the good results, and I love to exercise, it always makes me feel better, and I feel productive and worthwhile

anjuli

6/ 2/09 6:49am

Angela, thank you for sharing your story with me. The thing is...I think this is spreading to many joints throughout my body as yours did. But I am hopeful that I will soon be seeing a immunologist who is supposedly the tops in her field here. I am praying that she will be able to connect all the dots.

i just found out i have RA after ten years of suffering in my left knee. i have had 4 scope to have it removed. but after the last scope in april 2009, i was told it did not take and had to have a total knee replacement, but i still have my knee cap. after surgery aug 2009 i got too infections in my knee. had to go every day and have a iv with antibotics in it for 2 and a half months. blood work every monday to see if the med was high enough in blood stream. and now i have a lot of swelling in my leg, and husband cant see why when i have no bones in that area. i have to remind him i still have my knee cap, even thou i have metal and pastic in my left knee. and yes the drs can find out if you have RA thru blood work if they order the right ones, just look at what i went threw for ten years and just 2 weeks ago i find out the case of pain and swelling.

anjuli

6/ 2/09 7:09am

Ten years? I'm so sorry. And that just sounds crazy to me that person would have to go through all that to finally be diagnosed.

I didn't feel well last summer...tired all the time. During the fall I hurt all over. December I finally got into a specialist. It was not seen in blood work but found in hand x-rays. My hands have been hurting for at least 8 years. Im 46 years old. Molly

anjuli

6/ 2/09 7:29am

Thank you Molly. I hope your hands are now finally feeling better.

From reading the posts, it seems I have been somewhat fortunate with not having to go on for years before getting a diagnosis.  I started having severe, unrelenting pain in both wrists in July 2008, which was a major inconvenience since I used my hands and arms a lot at work.  I dealt with it for a couple of months, with no respite, and finally in early September 2008 went to see my regular doctor who ordered extensive blood work and wrist xrays.  Once she had the results, apparently I had tested positive for Lupus, she sent me to a Rheumatologist for follow up.  The Rhuematologist ordered even more extensive bloodwork to rule out Lupus, and that is when I was diagnosed with RA.  In November 2008 I was put on Celebrex, and the following January 2009, on Plaquenil.  The pain had made essential everyday tasks almost intolerable, and since I have been on the drugs long enough to be effective, the pain has become somewhat more manageable, although my left wrist is still quite painful, and other joints are beginning to feel like the RA is spreading.  For now I am getting along pretty well.  I am 53, married, and presently unemployed due to a plant closing--I worked until I was released in February of 2009.

anjuli

6/ 2/09 7:33am

Your story gives me more hope...and again points to the key being the skill and caring of the doctors. I am glad you found good ones.