Announcement

Collapse
No announcement yet.

Can anyone help me with question on Rheumatoid Factor?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Can anyone help me with question on Rheumatoid Factor?

    Can anyone tell me what the rheumatoid factor has to do with Lupus? My doctor said mine was pretty elevated and I have swollen lymph nodes all over, a bad rash on my face and chest, swollen belly (look pregnant), interstitial cystitis, purple spots on different areas of me, my hands and feet (or even arms and legs at times) go completely numb for no reason, have a prickly/tingling feeling in them at times, feel like cold water is running down my arms or legs at times, have some lumps now on top of my head that are oozing some kind of clear fluid (like a knot you might get if you hit your head real hard on something except that I have not had any kind of bump to my head and there are a few knots there), real dizzy at times, vomitting, and sometimes have a ringing in my ears. My toes often look purple and I am extremely tired all the time--I mean severely tired for no reason at all. I can sleep all night and still need to lay down after being up for an hour in the morning! I ache all over real bad in my bones too. My doctor is trying to determine if I have lupus or not but I am wondering if any of you who do have it could help me at all? It is taking so long for this to be diagnosed. He did bloodwork and said I had too high a rheumatoid factor. He did x-rays of all my joints and is seeing arthritic condition in there (I forget what word he used). He said my back is scoliosis. The ultrasounds of all my lymph nodes showed a lot of swollen nodes all around my neck and behind my ears area as well as linginal and groin area and they said there are some in my abdomen where there shouldn't be lymph nodes at all?! He said it definitely looks like an autoimmune situation but wants to determine exactly what it is (which I am so grateful that he is trying to finally get a true diagnosis on the condition as I have been in extremely severe pain for a long time now), The pelvic pain that is the worst pain is from the interstitial cystitis and I am being treated for that--so although it could take a few months to get relief from that, they said I eventually will. But the other symptoms outside of the bladder symptoms (frequency, etc) that I am having they said are not from the IC and something else is going on. Anyways, he is going to send me to a rheumatologist and supposed to call me this afternoon with the appointment but warned me it could be a few months before I could get in!!!! (which by then I bet a lot of these symptoms will be gone because the last episode I had, by the time I got to the specialist that time they had gone and I felt stupid seeing the doctor and told him I was fine at that point!) But I did not know that I had an episodic condition at that point and just assumed whatever it was had gone away and that I didn't need to see the doctor anymore! But it keeps coming back worse and worse and I just can't deal with it too much longer. I need to know what is wrong so I can figure out what I can do about it. By the way, the only thing that has given me any true relief from the symptoms within just a few hours has been corticosteroids (as long as they were at a high enough dose). I don't know why and the doctors don't either. Any thoughts anyone? I would be so grateful!!!!

    "What doesn't kill us makes us stronger!"
    Nicki

    Elmiron 100 mg / 3 times per day
    Meloxicam 7.5 / 1 time per day

    Diagnosed IC Feb 2011, working diagnosis for AI waiting true diagnosis and relief!

  • #2
    This must be so frustrating for you. Your dr. sounds like he is being thorough. Maybe ask your dr. to tell the rhuematologist to see you asap?

    Comment


    • #3
      Thank you Karen!

      My family doctor is being thorough and I am soo grateful for this (after so little concern from other doctors) but I am hoping I can see the rheumatologist soon!!! This has been going on for way too long and frankly I am so frustrated I am about ready to give up. I am in so much pain and that is something my doctor is not addressing at all and I don't want to ask because I am afraid he will stop looking into the issues I am having if I start complaining about pain. He already seemed a little wierd about me asking for a note for my college to give me a little extra time on assignments since I have weekly treatments and all.... I don't know why it would be a problem. With all I have going on and he is fully aware of--what is the problem with a note to my school to allow me extra time for my assignments if they are willing to do that for me? Every 8 weeks I go through an entire text plus journal articles (around 6 - 10 per week) plus papers and discussions (it is online school) and I just don't have the stamina right now for everything each time. I am getting really discouraged as each thing is just one slap in the face after another. I really am at the end of my rope right now.

      "What doesn't kill us makes us stronger!"
      Nicki

      Elmiron 100 mg / 3 times per day
      Meloxicam 7.5 / 1 time per day

      Diagnosed IC Feb 2011, working diagnosis for AI waiting true diagnosis and relief!

      Comment


      • #4
        Hi Nicki
        Steroids are a common long term treatment to help lupus, sjogren's, rheumatoid arthritis. Often a rheumatologist will start with those and also start on plaquenil, a DMARD (disease modifying anti rheumatic drug) that helps tamp down these autoimmune conditions but does not compromise the immune system.

        An elevated rheumatoid factor is present in approx 70-80% of sjogrens, lupus and rheumatoid arthritis patients. It is an autoantibody that shows your body is attacking its own tissue. Hope you can get in with a rheumatologist quickly because months is ridiculous!

        The only reason I know this is because I "might" have sjogrens. The rheumatologist thinks so but I am sero negative meaning my blood doesn't have the autoantibodies that your tests are showing. I am not convinced I have it at this point but did some research on it.

        You sound like you're really suffering, hope you get help soon.
        Last edited by cmclien; 04-07-2011, 02:05 PM.
        Cindi


        Gelnique for frequency/urgency - works great
        Macrobid after sex
        Prilosec, continuous birth control pills
        synthroid .088mg, mucinex-d, restasis

        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

        IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

        Comment


        • #5
          P.S. I was put on plaquenil, a very common autoimmune treatment and my bladder felt MUCH better so am hoping for you that if you're put on it, it will take care of your bladder at the same time!!!!
          I developed hives to the plaquenil, seems to be my common reaction to many meds so had to quit taking it.
          Cindi


          Gelnique for frequency/urgency - works great
          Macrobid after sex
          Prilosec, continuous birth control pills
          synthroid .088mg, mucinex-d, restasis

          Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

          Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

          IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
          AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
          AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
          Great treatment flowchart on page 19 of the pdf

          Comment


          • #6
            Thank you Cindi!!!!

            I have had another fairly sleepless night in a lot of pain and came and checked my computer to see that you had posted these very caring messages to me!!! Thank you. I can't describe what a comfort you have been to me right now. I just cannot understand why doctors that have the power to relieve suffering don't choose to. I have no pain medicine and am in just unreal pain right now and when I asked my IC doctor about it the other day she acted wierd about it and then sent a nurse out to tell me that she would give me a referral if I needed it but she couldn't give me any pain medicine. So I have been afraid to ask ever since because they acted like I had done something wrong. I have been crying most of the night because I just can hardly deal with this much more. I just don't understand why this is happening and what I need to do anymore. I feel I have tried everything to do what the doctors want me to and to do what I should but I feel like each one sends me to the next one and no one wants to take responsibility for what is happening. I wonder if life is even worth it when one has to feel this bad day after day with no hope of relief. And what gets me is that we are in a country that has all the technological capabiliities of relieving such suffering and it is a conscious choice of these doctors not to. Thank you so much for your notes. I just cannot tell you how much it meant to me tonight--I am really at the end of my rope with all of this and your words made such a difference to me in this moment. Nicki

            "What doesn't kill us makes us stronger!"
            Nicki

            Elmiron 100 mg / 3 times per day
            Meloxicam 7.5 / 1 time per day

            Diagnosed IC Feb 2011, working diagnosis for AI waiting true diagnosis and relief!

            Comment


            • #7
              Nicki
              Sorry you are so unhappy and in so much agony with all of this. Just try and remember you are getting closer to getting a true diagnosis and getting on with treatment for whatever autoimmune syndrome you have. There are additional blood tests that separate out the syndromes from each other.

              Did you hear back from the doctor with your appointment? Why don't you ask your doctor if he can request a sooner appointment since you are in so much pain? They can request "emergency" appointments and get you squeezed in. Also, since your blood work is already showing something ask him if he'll begin some kind of treatment for whats going on while you wait for the appointment? If he starts you on a steroid to reduce the inflammation it will make it easier to wait if you're in less pain. I am not a doctor but surely he could start some type of treatment like that. Heck when you get poison ivy or a spider bite they put you on a 6 day prednisone pack so am not sure why he couldn't treat you with a daily dose of something to help you out. I would talk to him again or have your husband go with you to discuss some type of treatment or pain reliever while you wait for your rheumatologist appt.
              Hang in there Nicki, you're getting closer.
              Cindi


              Gelnique for frequency/urgency - works great
              Macrobid after sex
              Prilosec, continuous birth control pills
              synthroid .088mg, mucinex-d, restasis

              Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

              Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

              IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
              AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
              AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
              Great treatment flowchart on page 19 of the pdf

              Comment


              • #8
                Thank you Cindi!!

                I will try doing that. The doctor office said they could not get through to the rheumatologist yet and they left a message for them. So they are waiting back now just to even talk to them and try to schedule an appointment! I will ask my doctor what you suggested. Maybe he can try plaqueril or is that just when you get diagnosed? He seemed leary of putting me on steroids even though I told him it was the only thing that helped last year... But everything that seems to help he seems to not want to do--no pain meds, no steroids, etc... and I am stuck waiting what seems an eternity now on this other doctor (they were supposed to schedule this referral over a week and a half ago and still no appointment date even set!) I will see if my husband can help me talk to the doctor and set up another appointment with him (the family doctor that it). Thank you Cindi!!! You are a real comfort to me!!!

                "What doesn't kill us makes us stronger!"
                Nicki

                Elmiron 100 mg / 3 times per day
                Meloxicam 7.5 / 1 time per day

                Diagnosed IC Feb 2011, working diagnosis for AI waiting true diagnosis and relief!

                Comment

                Working...
                X