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    Old 11-20-2013, 08:30 PM   #1
    teacupsnjeans
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    Could this be RA?

    Im not sure if anyone can help but I have a long wait for the specialist and thought I would ask. I have pain in both of my hands, all of the joints in my fingers and thumbs, a fever (lowgrade) that starts every afternoon and lasts until late in the evening. The fever runs about 99.0 to 99.6. My normal base temp is 97.5. I have sever fatigue as well. I sleep all night and still have to nap everyday and cannot seem to get moving because of the fatigue. In 2004 I had a positive ANA 1:640 speckled pattern and RF 1:180. The doctor said possible connective tissue disease. Over the years I have had POS ANA 1:80 4 different times. Recently I had bloodwork with a negative ANA and a RF of 7. I have had these symptoms for over 2 months now and cannot get in to see a rheumatologist for another month. The only other bloodwork that was abnormal was a WBC at 12100 and neutrophils at 8373. My grandmother had RA. Could this be rheumatoid arthritis or something else?

     
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    Old 11-20-2013, 09:26 PM   #2
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    Re: Could this be RA?

    The + ANA on several occasions and an RF factor + on 2004 is significant, and further teting needs to be done at this point to determine what connective tissue disease you do have. It is possible to have lupus and RA combined. Fever, fatigue, joint pains are common symptoms to both. It is not unusual to have antibody levels fluctuate or drop to lower levels after 10 years from when they were first +. Your rheum should do you a favor and get you diagnosed. Ten years is a long time to go with these symptoms and abnormal blood test results without having been diagnosed and more importantly treated for what you have.

     
    Old 11-20-2013, 09:35 PM   #3
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    Re: Could this be RA?

    Quote:
    Originally Posted by ladybud View Post
    The + ANA on several occasions and an RF factor + on 2004 is significant, and further teting needs to be done at this point to determine what connective tissue disease you do have. It is possible to have lupus and RA combined. Fever, fatigue, joint pains are common symptoms to both. It is not unusual to have antibody levels fluctuate or drop to lower levels after 10 years from when they were first +. Your rheum should do you a favor and get you diagnosed. Ten years is a long time to go with these symptoms and abnormal blood test results without having been diagnosed and more importantly treated for what you have.
    Thanks so much for your reply! I agree..this has been a miserable 10 years with no treatment. This most recent round of symptoms has been the worst yet and I am getting frustrated. They say it isn't lupus because I don't have rashes, but I have read that you can still have it without the rashes, for some reason they disagree on that one. Then they tell me my hands are not deformed so it must not be RA. I am hoping this DR will do something. I am terrified of what could happen if they don't!

     
    Old 11-21-2013, 08:04 AM   #4
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    Re: Could this be RA?

    You do NOT have to have a rash to have lupus. There are many symptoms, 11 of which are considered the most important, and you need any 4 of them or more. These are listed in the criteria on the sticky notes at the top of the lupus board here. I would review those and perhaps take the list with checkmarks for your symptoms to your Dr. Are you seeing a rheumatologist? If not, you need to. Some Drs will consider treating patients even if they are unwilling to make a diagnosis. You can ask for a "presumptive" diagnosis so you can get treated. The other thing that may clarify this is xrays or MRI of your worst joint(S). If it shows erosions (eaten away areas) of your joints from inflammation, it is RA. You can have RA without obvious deformity. By the time deformity occurs, you have joint destruction going on. Don't want to wait for that to occur! I would gather all your records and comb thru them looking for low WBC, low lymphocytes and anemia on CBC, high sed rate or CRP (inflammation), and all your previous RA and ANA results. If you have not had anti Smith or anti dsDNA or anti CCP antibodies run, I would request those. The first 2 are very specific to lupus, the 3rd to RA. A diagnosis should not be this elusive! Look also for any protein or blood in urine in past. Good luck! If you get nowhere with this approach, see a new rheum!

     
    Old 11-21-2013, 12:13 PM   #5
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    Re: Could this be RA?

    Quote:
    Originally Posted by ladybud View Post
    You do NOT have to have a rash to have lupus. There are many symptoms, 11 of which are considered the most important, and you need any 4 of them or more. These are listed in the criteria on the sticky notes at the top of the lupus board here. I would review those and perhaps take the list with checkmarks for your symptoms to your Dr. Are you seeing a rheumatologist? If not, you need to. Some Drs will consider treating patients even if they are unwilling to make a diagnosis. You can ask for a "presumptive" diagnosis so you can get treated. The other thing that may clarify this is xrays or MRI of your worst joint(S). If it shows erosions (eaten away areas) of your joints from inflammation, it is RA. You can have RA without obvious deformity. By the time deformity occurs, you have joint destruction going on. Don't want to wait for that to occur! I would gather all your records and comb thru them looking for low WBC, low lymphocytes and anemia on CBC, high sed rate or CRP (inflammation), and all your previous RA and ANA results. If you have not had anti Smith or anti dsDNA or anti CCP antibodies run, I would request those. The first 2 are very specific to lupus, the 3rd to RA. A diagnosis should not be this elusive! Look also for any protein or blood in urine in past. Good luck! If you get nowhere with this approach, see a new rheum!
    Thank you so much!!! I am going to go through all of my bloodwork with affine tooth comb! I have had such horrible luck with the doctors but I believe it is because of the military doctors. I see a different one every time I go in so there is no consistency. We transferred every 2 years also so it didn't help things. Now we are retired and maybe I can get somewhere. I do have an apt with a rheum on Dec 11 and I really appreciate all of this info so that I can be fully prepared. Would a high WBC be lupus or RA related? My most recent WBC was high. You have no idea how much I appreciate your help. You are an angel!!! I just want to be prepared when I go see the rheum. I did just have the anti Smith, anti dsDNA, anti CCP done and they were negative.

     
    Old 11-21-2013, 12:24 PM   #6
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    Re: Could this be RA?

    Not everyone with lupus has a + dsDNA or anti-Smith antibody. A + ANA plus sufficient symptoms is all that is needed for a diagnosis. Good luck with your upcoming appointment. Please let us know how it goes. Yes some people with lupus or RA can have a high WBC instead of low.

    Last edited by ladybud; 11-21-2013 at 12:26 PM. Reason: added

     
    Old 11-21-2013, 04:31 PM   #7
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    Re: Could this be RA?

    ladybud,

    These are all of my abnormal test results:

    Test Date Result Reference

    Absolute Neutrophils 10/24/2013 8373 1500 - 7800
    ANA 1/21/2004 1:640 speckled
    ANA 5/6/2004 1:160 speckled
    ANA 10/21/2004 1:80 nuclear
    ANA 1/4/2010 1:80 Speckled
    ANA 10/24/2013 Neg
    Basophils 8/22/2007 2.3
    CRP 12/30/2009 .20 .20-.90
    HCT 10/1/2012 46 32.6 - 43.4
    Hematocrit 1/21/2004 45.6 34.0 - 44.0
    Hemoglobin 1/21/2004 15.8 11.5 - 15.0
    HGB 10/1/2012 15.9 11.0-14.9
    Lymph 8/22/2007 48.3 20 - 45
    Lymph 4/10/2009 48.1 20.0 - 45.0
    Lymph 4/10/2009 48.1 20.0 - 45.0
    MCV 12/30/2009 89.7 91.0 - 99.0
    Nuclear AB Panel 12/13/2005 1:80
    RBC 10/1/2012 5 3.57 - 4.97
    RDW 4/10/2009 10.8 11.5 - 14.5
    RDW 4/10/2009 10.8 11.5 0 14.5
    RF 5/6/2004 1:140
    RF 8/22/2007 1:60
    Rheumatoid Factor (add-on) 10/24/2013 7 <14
    WBC 10/24/2013 12.1 3.8 - 10.8

    I did some research and the speckled pattern is indicative of Lupus? I also have the positive RF so I think you may be right...it could be both. What do you think?

    Last edited by teacupsnjeans; 11-21-2013 at 04:33 PM. Reason: was not finished

     
    Old 11-22-2013, 07:54 AM   #8
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    Re: Could this be RA?

    I certainly think you could have both. A couple of tests that may help-anti-RNP is an antibody elevated in mixed connective tissue disease at high levels, low levels in lupus can occur too. Complement levels, C3 and C4 can be low in lupus. It would help to have anti-dsDNA and anti Smith repeated when you are in a flare since those can fluctuate and you've only had them checked once. Sometimes it is hard to catch the antibodies in a + state. The only thing a bit unusual, but not unheard of, is the high WBC and high HCT, as those are more often low in lupus. But inflammation can raise the WBCs. Did you, by any chance, have any infection on 10-24-13 when your CBC was done? Any chance you have sleep apnea that could be raising your HCT from low oxygen levels at night? Sleep apnea is common in lupus and contributes to the daytime fatigue. I would get your oxygen saturation measured when you go to the Dr. with the little fingertip thing, as chronic hypoxia will raise HCT as a compensatory mechanism to increase oxygen delivery to the tissues. Many people with lupus and RA have pulmonary issues that are subtle and go unnoticed.

     
    Old 11-22-2013, 04:43 PM   #9
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    Re: Could this be RA?

    I will definitely bring up those tests when I see the rheum on the 11th. Thank you so much! I did have my pcm run the wbc again and he called today and they are back down to 7.1 so I must have had some kind of infection going on. I do have a referral for a sleep study and am in the process of getting that set up. My husband says I snore very weirdly at night and I choke and sometimes I stop breathing..so sleep apnea may be what is going on. Also, the doctor gave me and inhaler because he said I now have asthma...which I have never had in the past...could that be what is raising the HCT?

    I found a great app for keeping up with symptoms too and I can print a report from it to take to the dr when I go so hopefully that will help as well.

     
    Old 11-23-2013, 08:46 AM   #10
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    Re: Could this be RA?

    I would bet sleep apnea is raising your HCT. Your husband's description is very classic for apnea. Each time you stop breathing, your oxygen level in blood goes down, which stimulates your body to make more RBCs, hence the high HCT. Apnea can occur many times per hr of sleep, and has dangerous effects on your health. It should be a priority in getting checked out and treated.

     
    Old 11-23-2013, 12:58 PM   #11
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    Re: Could this be RA?

    Ladybud,

    I will get that sleep test done asap!!! Also, I just came across some more tests : RF of 12 on 1/7/2011 and also AntiDNA of 34, RNP of 16, Smith Anti of 18, Anti SSA of 14 and AntiSSB of 10 from 2004. I know they aren't high numbers but something actually did show back then as where now they just come up negative with no number. DO you think these will help with diagnosis?

     
    Old 11-23-2013, 01:28 PM   #12
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    Re: Could this be RA?

    I think those additional labs will be VERY helpful. The SSA and SSB would be considered negative, I believe, since they are under 20. However, the anti-Smith and anti-RNP and dsDNA antibodies are all positive and dsDNA and Smith antibodies are very specific to lupus. RNP can be positive in lupus, as well as other autoimmune disorders. Smith and RNP should be under 1.0 so they are significantly elevated. Most labs use under 10 on DNA as negative, so that is positive, mildly so, as those can reach 300-400 in lupus with kidney involvement. So these are extremely useful and I would make sure when you see the rheum next you have a copy of these with you and for your medical record. I would always keep a copy of labs yourself for just this purpose. I think this will get you diagnosed and on your way to treatment!

     
    Old 11-23-2013, 01:41 PM   #13
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    Re: Could this be RA?

    YEAH!!! I am finally feeling positive about the visit! Thank you so much for helping me. I had no clue what to bring in to her when I went. This also shows me how important it is to have the copies because my PCM told me all of those tests were negative and I always thought that maybe he wasn't right but I just let it slide. I have been ill for so long and I believe partially because I didn't step up and stand up for myself. I think it is time I step up and ask questions!!!! Thank you so much!!! I will let you know what she says after I see her on the 11th. I hope you and your family have a great thanksgiving!!!

     
    Old 11-23-2013, 02:08 PM   #14
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    Re: Could this be RA?

    I can't believe your Dr. told you all your results were negative when they clearly were not. I don't understand why tests are ordered and then abnormal results ignored or not revealed to the patient. This happens a lot, however, which is why it is so important to ask for lab results on paper for yourself so you can verify what is being told to you. I hope your visit goes well and a nice Thanksgiving to you and family as well.

     
    Old 12-04-2013, 08:01 AM   #15
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    Re: Could this be RA?

    Please excuse my anger but I am frustrated beyond anything I have ever felt. I got into the Rheum early and she blew me off. She said its fibromyalgia and nothing more. I asked her about the positive test results and she said those can show up with fibro. I asked her about the fevers because fever is not associated with fibro and she told me to see a infectious disease doctor about those. I told her I don't have infection and they have checked for that. She said she is sticking with fibro...I told her you have all of the positive results right in front of you and you think that there is nothing other than fibro. I have test results and symptoms that are not fibro related and she said fibro attacks the joints too. She is horrible and made me feel ridiculous. She told me why don't you just go to the Mayo CLinic then and I told her I have been there and they said they think it is connective tissue disease and said I should be watched closely and I showed her their recommendation and she proceeded to say :well they didn't put you on medication so they obviously don't think you have it" I told her that they didn't start meds because I went to florida to the mayo clinic and they are not the ones that would treat me...she is....and she rolled her damn eyes at me. Then when I tried to show her my chart that showed my fevers she said that is just my word that I have them. I told her to call my doctor...he has proof because I had it in his office and she rolled her eyes again. She said your bloodwork is normal this time. I told her that as a rheum she should know that the bloodwork for these things can fluctuate and I even told her what ladybud said about it not being abnormal for the bloodwork to do this over the years....she laughed at me...

    I am so sick of being sick. I am so sick of being tired. I am so sick of doctors treating me like I am some sort of fool. AllI can do is cry right now...I am so discouraged. This has been going on for years...no one is going to figure out what is wrong with me because no one cares. I know my body. I know what is happening because I can feel it. All the documentation I have done was for nothing because she wouldn't even look at it. If it was fibro wouldn't the fibro medicines work...because none of them have ever worked...ever.

    when something goes horribly wrong..then maybe someone will listen...

    Last edited by Administrator; 01-28-2014 at 12:27 PM.

     
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