• anjuli anjuli
    May 24, 2009
    How long did it take you to get a diagnosis for RA?
    anjuli anjuli
    May 24, 2009

    How long did it take you to get a diagnosis for RA? Back in the 90s, I experienced 3 bad bouts of Iritis. After many tests, it was found that I have the genetic marker for RA and was told I would need to monitor for it. Three years ago, I had a rampant infection for an improperly diagnosed situation running through my system for six months. After that infection, I began experiencing joint pains all through my body. I tested for RA and was told I didn't have it. Now have have no cartilage in the arch joints of both feet, the joints of both thumbs are deteriorating, another finger is triggering, and at various times, my wrist and elbows will become swollen and sore. I've been experiencing extreme fatigue, anemia and flu-like symtpoms for about a year now. I'm going to be tested again for RA...but I have to tell you, I'm getting very depressed and feeling hopeless of ever getting my doctors to connect all the dots and help me with this.

     

    How long did it take you to get a diagnosis?

    READ MORE

FROM OUR EXPERTS

This question has not been answered by one of our experts yet.


FROM OUR COMMUNITY

  • Kelly Young May 24, 2009
    Kelly Young
    May 24, 2009

    Hi anjuli,

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

     

    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 Cool

    READ MORE
    • anjuli
      May 25, 2009
      anjuli
      May 25, 2009

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

       

      anjuli

      READ MORE
    • Becks
      May 28, 2009
      Becks
      May 28, 2009

      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

      READ MORE
  • rondalst June 01, 2009
    rondalst
    May 24, 2009

    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.

    READ MORE
    • anjuli
      June 02, 2009
      anjuli
      June 02, 2009

      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.

      READ MORE
  • KMolly May 28, 2009
    KMolly
    May 24, 2009

    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

    READ MORE
  • kristy May 28, 2009
    kristy
    May 24, 2009

    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.

    READ MORE
    • anjuli
      June 02, 2009
      anjuli
      June 02, 2009

      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.

      READ MORE
  • Daina June 02, 2009
    Daina
    May 24, 2009

    I was around 8 when they finally used the term juvinile rheumatoid arthritis. My mother started taking me to the doctor when I was about 4. I have NEVER tested positive for any ra factor.......It can take a really long time, alot of painful tests, but without that diagnosis, so many drugs would be unavailable....

    Good luck and I hope you feel better soon!!

    READ MORE
    • anjuli
      June 02, 2009
      anjuli
      June 02, 2009

      Thank you so very much. I am so sorry you've had to deal with this so very young but your strong spirit shines through even this medium and I can see it.

      READ MORE
    • Daina
      June 02, 2009
      Daina
      June 02, 2009

      Thanks. I'm grateful to be able to help in any way possible. also, I obviously meant drugs WOULD NOT be available without the actual diagnosis.... I really hope everything goes well for you!

      Daina

      READ MORE
    • anjuli
      June 02, 2009
      anjuli
      June 02, 2009

      Yes...I understood what you were saying. Thank you, love.

      READ MORE
  • Nan
    Nan
    May 30, 2009
    Nan
    Nan
    May 24, 2009

    I have always tested negative for RA but am going through that back door treatment. I started on mobic, ha ha no help at all. then plaquenil, some help. Then arava was added and I am feeling better but still have bad days. They are just fewer now. I have been going through all of this for about 3 years. My gp, 2 rheumies and ortho docs. I have a portfolio of x rays and numerous tests. I have had a rough go of it and all I hear is Its the beginnings of something and connective tissue disorders and about the degeneration in my joints and I am 42 now there shouldn't be all this degeneration. Blah,blah, blah and I hear that I shouldn't be worried about an absolute diagnosis but that I should be thankful that i feel better. I am thankful but would like to be armed with knowledge about my condition so I can better fight it and understand it.

    READ MORE
    • anjuli
      June 02, 2009
      anjuli
      June 02, 2009

      I understand your frustration. Yes, with  knowledge of what we're dealing with, we can then make informed decisions in our care. Otherwise, it feels like stumbling around in the dark.

      READ MORE
  • Cindy May 28, 2009
    Cindy
    May 24, 2009

    I am one of those people who tests negative, but I am thankful that I was correctly diagnosed after about one year of monitoring me.  There was no question that my symptoms pointed to RA, but they also questionedc whether I might have Lupus.  I have a history on my mother's side of both.  She has a brother with RA and a sister with Lupus.  After the year of monitoring me they ruled out Lupus and diagnosed me with RA.  I have been through several meds in the past eight years.  I do tolerate methotrexate well so I have been on it through the trials with all the other combo of meds.   I now take nine per week along with 15 mg of prednisone per day and I have had four infusions of orencia.  Enbrel and Humira did not work for me so I am crossing my fingers that the Orencia will start to shine through within the next couple of months.  I want off the prednisone!  Tired of the bruising, burning and weight gain.  I am considered permanently disabled at this point which is a whole different thing to adjust to. 

    READ MORE
    • anjuli
      June 02, 2009
      anjuli
      June 02, 2009

      Now one year of monitoring seems reasonable to me. That's why I feel the skill of the doctors is truly key here. I'm glad you seemed to have found good ones. I hope I will too.

       

      I'm not sure I could adjust to being labled totally disabled either.

      READ MORE
  • Angela May 28, 2009
    Angela
    May 24, 2009

    I wish there was a test that would tell you if you have RA or not. It took me a couple of years to find out what was wrong with me. I still don't know alot. I DO know how I feel and how I am affected by whatever is wrong with me. I do have RA and also Hep C. So my doc says the hep c intensifies the RA(like it needs intensifying right?). So I don't know what is the RA and what is the Hep C. All I know is I haven't been able to get the answers I need to know about whats going on with my body and what to do to stop it. I can't get a straight answer at the doctors office.  So I wish you luck and hope they can find out and begin treating it. I also hope the treatment helps right away. I had to try so many different kinds before I found some relief from the pain and now that one isn't even helping anymore so back to step one. It could be worse though I guess. GOOD LUCK TO YOU.

    READ MORE
    • kristy
      May 28, 2009
      kristy
      May 28, 2009

      Hepatitis means inflammation of the liver. it can be cases by many things, including viruses,alcohol,drugs and certain genetic conditions. it can be acute,lasting less then six months,or chronic. chroinc hepatitis can lead to long term liver damage resulting in cirrhosis. Hepatitis C is a virus that attacks and invades liver cells. as a result of being infected by the vius, the liver cells may be injuryed and die. The samaged areas are replaced by scar tissue(fibrosis. Cirrhosis is a result of extensive scarring of the liver.

       

      most people have no symptoms and not aware they are infected. it is the leading cause of cirrhosis and liver cancer. it is acquired by blood to blood contact.

      screening involes a blood test which evalutes for antibobies to Hepatitis C. if the screaning test is positive for antiboby,indicating you may have been exposed to the vius in the past, a viral load(HCV_RNA) test will be performed to determine if virus is still present in the blood stream(VIREMIA).

      READ MORE
    • anjuli
      June 02, 2009
      anjuli
      June 02, 2009

      Thank you Angela and I wish only the best for you too!

      READ MORE
    • Fran
      July 11, 2009
      Fran
      July 11, 2009

      My RA doctor told me that the RA and hep C is considered a rare disease so how to go about treating it is an unknown because there is no research. Therefore basically it is untreatable "unless," you can get rid of the hep C. Back to square one as it is NOT recommended to do the treatments for hepatitis C if you have RA because it can make it so much worse. I think we are pretty much in between a rock and hard shell.

      Good luck to ALL those with the unfortunate symptoms/diagnosis of RA. I wish you all peace and less pain.

      Fran

      READ MORE
  • Angela53510 May 27, 2009
    Angela53510
    May 24, 2009

    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.

    READ MORE
    • Rosella
      May 28, 2009
      Rosella
      May 28, 2009

      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

      READ MORE
    • Angela53510
      May 28, 2009
      Angela53510
      May 28, 2009
      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 READ MORE
    • anjuli
      June 02, 2009
      anjuli
      June 02, 2009

      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.

      READ MORE
  • Julie Robbins May 25, 2009
    Julie Robbins
    May 24, 2009

    Hi, I have been living with this thing for about four years now and still do not have a definite diagnosis of RA. My rheumatologist just kind of hums and haws around giving me a definite diagnosis. I have been told I have seronegative RA and also "inflammatory arthritis" which the only difference between the two is a negative RA factor. Maybe you another opinion? Hope this helps.

    READ MORE
    • anjuli
      May 25, 2009
      anjuli
      May 25, 2009

      Hi Julie,

       

      Goodness...I am beginning to wonder if it's really that hard to diagnose RA of if there just aren't many good diagnosticians out there. Where's Dr. House when you need him?

       

      Thanks for your input. I'm sorry to hear of your difficulties but I guess we all just have to hang in there.

      READ MORE
  • andrew May 25, 2009
    andrew
    May 24, 2009

    Sorry that you've been through the ringer. I hope and pray that you find relief soon.

     

    My story sounds very much like yours. Iritis in both eyes five years ago...no other symptoms. I was told about autoimmune disorders at the time but quickly forgot about it. Then achilles tendon tears in both legs requiring surgery. No mention of RA. Then joint pain set in along with fatigue. After five years, and multiple visits to docs, I was finally diagnosed. This story is all too common with RA. The good news is that a diagnosis can lead to treatment and relief!

    READ MORE
    • anjuli
      May 25, 2009
      anjuli
      May 25, 2009

      Oh wow...five years...okay...I'll try to stay centered and keep going until I get some kind of diagnosis. Thanks for your support. I do soooooo appreciate it!

       

      anjuli

      READ MORE
  • rn-ms-1983 March 20, 2012
    rn-ms-1983
    May 24, 2009
    I am a nurse and a RA patient and I totally understand your frustration. I had symptoms for 10 years before I got my diagnosis and as nurse I had access to numerous physicians and medical opinions. I was told I did not have RA but I had Fibromyalgia and migratory arthritis even though my symptoms were overwhelming that I had RA. As a healthcare professional I was naive to think that there was always test to confirm a diagnosis. The truth is that the physician has to treat the patient with the aid not absolution of lab and radiology results. Another important fact to know is that every patient with RA or other autoimmune disease do not have lab test to back up the diagnosis. The patient may have a "positive" lab result with an acute flare up but then have a normal result months later convincing most professionals that the positive was from an inflammatory state that has passed. The truth as most Rheumatologist and Researchers now know is that if a patient has the "tell tell" symptoms and ailments of the RA patient then the diagnosis of RA should be made despite the lab results. Furthermore, this is confirmed once the patient is started on RA medications since the patient most often gets some relief. The key to an accurate diagnosis an treatment is to find a Rheumatologist that is current on the most current medical research and treatment of RA. These professionals know not to just use lab studies to make a diagnosis and are also up to date on the current therapies with the most success. I made the mistake of trusting on non-expert opinions and not seeking out a good rheumatologist for years and thus I suffered. Take my advise and ask around and find a good rheumatologist in your area. Keep searching until you find one that "hears" you. Good luck and God Bless! I hope this helps. READ MORE
You should know Answers to your question are meant to provide general health information but should not replace medical advice you receive from a doctor. No answers should be viewed as a diagnosis or recommended treatment for a condition. Content posted by community members does not necessarily reflect the views of Remedy Health Media, which also reserves the right to remove material deemed inappropriate.