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    Old 09-22-2015, 12:47 AM   #1
    P3ps1max
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    Question ????Lupus

    HI just wondering if anyone could help decipher my blood results, i was diagnosed with palindromic rheumatoid along with a un-diagnosed connective tissue disease around two years ago after testing for lupus with a negative result do not know what was tested i was just told by rheumi it was negative, still have a lot of problems with rashes joint pain and swelling and such so got referred to immunologist, letter does not say much just that full blood count satisfactory, crp and esr elevated, double stranded dna strong positive, mild proteinuria, anti tgg, bence jones c3 c4 and ena all normal not sure if this is anything or nothing, tried ringing for explanation awaiting a call back(that was 3 days ago) any help would be greatly appreciated........

     
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    Old 09-22-2015, 06:50 AM   #2
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    Re: ????Lupus

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    Originally Posted by P3ps1max View Post
    HI just wondering if anyone could help decipher my blood results, i was diagnosed with palindromic rheumatoid along with a un-diagnosed connective tissue disease around two years ago after testing for lupus with a negative result do not know what was tested i was just told by rheumi it was negative, still have a lot of problems with rashes joint pain and swelling and such so got referred to immunologist, letter does not say much just that full blood count satisfactory, crp and esr elevated, double stranded dna strong positive, mild proteinuria, anti tgg, bence jones c3 c4 and ena all normal not sure if this is anything or nothing, tried ringing for explanation awaiting a call back(that was 3 days ago) any help would be greatly appreciated........
    I would say that the results are most consistent with lupus since dsDNA antibodies were strong positive. The protein in urine goes along with that, as well as the elevated CRP
    and sed rate.
    The rest was apparently normal, which is good. It seems with time your illness is declaring itself more specifically.

     
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    Old 09-22-2015, 10:19 AM   #3
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    Smile Re: ????Lupus

    thank you so much for your reply, i thought that dsdna was mentioned last year but could not quite remember, so thankyou for helping me to understand a bit more clearly, the secretary from immunologist rang today to let me know consultant would be ringing me in the morning to discuss results so hopefully will all be a even clearer tomorrow, once again thankyou for your quick reply

     
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    Old 09-24-2015, 10:00 AM   #4
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    Re: ????Lupus

    hi again just a quick update, immunologist rang wednesday morning and did explain that given my symptoms the blood results and a strong positive dsdna, in her opinion this was all pointing toward lupus, however as i was referred by rheumi she said it was up to the rheumi to diagnose and she had sent her an urgent fax, as i did not have an appointment until January she advised i ring rheumi and get a telephone appointment to discuss what she had told me, i did just that but could not get to speak to her, a nurse did ring me to tell me she had looked at my notes and told me not to worry everything was fine and to continue with my medication (hydroxychroraquine and sulphasalazine), and she would see me at next appointment, whilst i feel so glad she has told me not to worry, i am a little disappointed that nothing was explained to me especially as the immunologist seemed quite concerned, but for now i guess i will just have to put it to the back of my mind until my next appointment........

     
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    Old 09-24-2015, 05:22 PM   #5
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    Re: ????Lupus

    I personally would not accept this message from the nurse, as nurses are not trained in diagnosis, and everything is fine, is not accurate. I would insist on speaking to the Dr. and getting your appointment moved up. It amazes me how everyone wants to "pass the buck" when it comes to diagnosis. I think the immunologist is right, and the rheum sent you to her for a consult, so the buck should stop with her! Certainly consultation between the two is fine, but in all fairness to you, someone has to make a stand with a diagnosis, so you get treated appropriately. I would want my appointment with rheum moved up, a nephrology consult (kidney specialist), and I would be assertive at getting that and not back down. You go girl!

     
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    Old 09-29-2015, 01:07 AM   #6
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    Re: ????Lupus

    Hi thanks once again for a quick reply, i spent the last few days trying to speak to anyone involved in my healthcare to give me a further explanation, you are so right no one wants to say anything, the rheumi nurse eventually rang back and assured me that it was in fact my rheumatologist that she had spoken to and that she was happy for meds to stay the same and not to worry...... i then asked further questions regarding dsdna and proteinuria and was told that everybody can have this at some time or other and again not to worry???? Still not very happy so i have requested that my appointment be brought forward she said she would see what she can do...... really fed up of being given the run around, i do so wish someone could have taken five minutes to explain correctly but it seems no one is prepared too, thanks once again for your help i will not sit and wait until January and will change rheumi if i have to!

     
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    Old 09-29-2015, 07:54 AM   #7
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    Re: ????Lupus

    It is frustrating indeed, and I hope you get better info when you see the rheumi. In addition, I would ask for a copy of your test results, so you know how high your dsDNA is, as there is a wide range, like 10-500, that it could be. The higher it is, the more significant. Good luck with a sooner appointment. You can always seek a second opinion as well.

     
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    Old 09-29-2015, 10:49 AM   #8
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    Re: ????Lupus

    hi im not sure of the ranges, in my letter off immunologist it does say strong positive dsdna at 179, whatever that means, that is the only number given the rest just says raised esr, raised crp, and raised proteinuria i did push for answers regarding the proteinuria as was not sure what it meant and i have done 3 more water samples myself at different times of the day on different days and all showed plus proteinuria and blood, no explanation given again just told i might have a uti and to put a water sample in at gp to which i have today....... thanks once again for all of your replies i most certainly will ask for a copy of results, if i do get any further info i will post back....

     
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    Old 11-18-2015, 10:00 AM   #9
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    Red face Re: ????Lupus

    Hi again just an update after being told not to worry and to stay on current meds i eventually had my appointment with rheumi today, more confused as she said she did not know about letter from immunologist so i showed her mine she left room came back and booked me in for all sorts of tests, she confirmed that my dsdna was certainly a strong positive aand indicative of lupus...... so she has stopped sulphasalazine, increased hydroxychloraquin and has given me a new medication to start called methotrexate, has anyone out there been given this? As up to now all i have is a booklet and its scaring the life out of me just reading it, any advice would be most welcome many thanks

     
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    Old 11-19-2015, 07:41 AM   #10
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    Re: ????Lupus

    Methotrexate is a tried and true treatment for lupus with a long history of safety and effectiveness. I have been on it 20+ years and get along with it just fine. Most people do, so I would not be afraid to try it. It seems you at least now have a diagnosis! That is a big step in getting the help you need and feeling better. I would see if there is a local support group that might be helpful in helping you adjust to the idea and learn more, get emotional support, etc. Having friends who understand is so important to coping with this illness.

     
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    Old 11-19-2015, 11:16 AM   #11
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    Smile Re: ????Lupus

    thank you so much once again for your reply and thank you for explaining that medication i have stopped reading about it as it was really worrying me, i suppose really what i should have asked is would any rheumi put someone on this without being pretty sure as she was very thorough in sending me for urine analysis, lots more bloods chest xray, scan, and also a lung function test to which i am awaiting an appointment, the reason i ask this is although she confirmed the dsdna is a strong positive for lupus she did not 100% confirm it other than saying that was a strong positive that she wanted to change my medication and do all the above tests, and because of that i just have a little niggle regarding taking this medication without being sure, on a plus side from what i have found out it seems they do not just give it out willy nilly so i take that as a positive, again thank you for your kind words and i will definitely join some form of lupus site so that i can try and understand a little more about it because at the moment i just have what i can read on leaflets and not real stories....... thankyou

     
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    Old 11-19-2015, 02:04 PM   #12
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    Re: ????Lupus

    You are correct in that a rheumi would not prescribe MTX without a compelling reason to do so. Even if the rheum didn't say outright, "I think you have lupus", I think she is treating you as such based on the anti-dsDNA results, your history of protein/blood in urine, and other symptoms and labs. I would move forward with that in mind, and learn all you can, connect with people in the lupus community, get familiar with the online resources for your area, nation and the US, and go to the library and check out books. Some of the information may seem scary at first, so keep in mind not everyone has every symptom, and there is a wide range of mild to severe manifestations, and most people fall into the mild-moderate category. Also, look at newer books, as older books will have a more negative prognosis, since treatment and understanding of the disease have improved significantly. There are many things you can do for yourself to help your health improve and treatment be successful. Try to be your own advocate, and ask for what you need. Don't minimize what you are experiencing-be honest and forthcoming about your needs, which will get you the best help. This is not a death sentence! Many of us (about 1 in 150 people) live well in spite of lupus, with treatment and lifestyle adjustments, you can do it too. You need a good Dr, a support system, understanding of the illness, and some leniency on yourself to take care of yourself in terms of rest, reduced expectations when you need it, and time to adjust to this. I think it took me a long time to adjust. I fought it tooth and nail for years, and ran myself ragged, made myself more sick, and finally caved in when I was on the verge of collapse. Not the best way to deal with it, speaking from experience. Hopefully, your friends and family will accept this, as you will, and be supportive, loving, and understanding, which we all deserve. Hugs to you!

     
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