diagnosed too easy...hmmm

i feel i was diagnosed too easy with lupus...

I am hypothyroid since 1998..

been 3 years menopaused..that threw thyroid further crazy...

then leg/knee/hip/groin pain lasting 6 months

then it left there..went to my collarbone now 3 months & calve pain when trying to go for walkies.

xrays revealed chondrocalcinosis (Pseudogout) orthopedic surgeon felt maybe rhumetoid arthritis..sent me to rhumetologist

my Gp was very dumb to not jump on things, but last sent me for autoimmune tests at my request.

my CRP is elevated out of range 7.8 (so inflamation)

my thyroid been bouncing around,at times was over medicated, but now its going slow..been balancing act.

my ANA test 1:320 homogenous and fine speckled

and my cholesterol is just slightly out of range..thyroid could do that bouncing around.

All other testing they have done is negative...I had hearing loss temporary last year then my inflamation was 11.8 CRP..so dosed me with prednisone then yuk!

i have rhumetoid arthritis on my Dads side(my Gran)..

Rhumey just said you have lupus..

I asked how he came to that? He said what else would it be...

SO tried to put me on prednisone again..i cant use it,it makes me high...so im gonna take non-steroid anti inflams

oh and placquinel 200mg 2 times a day...

i feel this was too easy diagnoses....

17 Replies

  • Well if it is rheumatoid arthritis wouldn't the treatment be similar - Plaquenil? If you treat with anti-inflamatories but not prednisone then in a couple of months you will either feel better or you will be worse. To bad about the prednisone making you high, it is not good for you but it does get things settled down fast while the Plaquenil is kicking in. I wouldn't take the quick diagnoses to seriously since it will probably change the next time you are in. I started over 2 years ago with a "probably Lupus" and have gone through 2 "no it is not Lupus" and now back to "yes, it is Lupus". So as long as you are being treated for either/or and you start feeling better then you are on the right track. The Plaquenil does take a while to work so be patient and I hope it all goes away for you.

  • Thank you so much...

    and good thinking:)

  • A diagnosis of lupus is made based on symptoms, history, a variety of tests and process of elimination. There is no definitive test. Lupus can affect any part of the body, including the thyroid. A lot of your symptoms do sound like lupus.

    The thing to do is make an appointment to have a sit down conversation with the rheumatologist. Ask what led him/her to come to this diagnosis. You have a right to do this.

    Get a copy of The Lupus Book by Daniel Wallace MD. Read it.

    Ask for copies of your lab work at each visit and keep them in a notebook. This will become important as you begin this journey.

  • Ive got all my lab tests, because Doctors here seem to not pass things on....I made sure he got the results, cause I delivered them:)

    I did ask him point blank..."What thing or test made you decide it was lupus"? He just replied,"What else would it be"? Seems my lupus is so far mild to medium joint and muscle stuff...

    I will check that book out and thanks, but I have not stopped reading since he said"Lupus"....:)

  • You're showing many lupus traits, why do you think it was too easy? Were you expecting a different diagnosis? You probably did loads of research by now but the more you read the more you'll see that the diagnosis isn't based on blood tests only, many things are taken into account before a diagnosis like lupus is applied - indeed, many on this forum had the reverse experience and had to wait years to be diagnosed and for treatment to start precisely because of lack of a definitive test.

    Still, I agree that the doctor should have explained "why not anything else" to give you the confidence that he took everything into account when he diagnosed.

    In relation to the Prednisone - you may ask your doctor for Prednisolone which is a derivative of Prednisone that is easier to metabolise and has less side effects. The hyper effect you've experienced is usually due to high doses - he could reduce the dose to make it more manageable.

    Good luck - the first few months from diagnosis are not fun. Trying to cope with the illness per se and then with the idea of it is not easy. Don't hesitate to ask questions here, there are many who probably have had what you may encounter, it is a very useful resource.

  • Thank you Purple top...

    I think because i was in his office like 10 minutes tops...just seemed all pretty quick...my pain is about medium, but always there...more like ache i guess...then i heard the 1:320 ana etc doesnt always mean lupus...

  • I must admit when they told me I had Lupus I was so relieved to get a name for all the turmoil I had been going through I didn't think to question much and as I started to read all the pamphlets I was overwhelmed by the enormity of the illness. It is useful to be informed but not to the point of scaring yourself as not all the symptoms written about happen to everyone.

    I agree with Chapter there is obviously something up with your body and it appears to be rheumatological so they would probably treat it the same way.

    I was impressed with all the notes and results you keep I was never that forward thinking I personally came to realise that they are never 100% sure even when you get a diagnosis and the best thing is to see if the medication helps if it doesn't it will be the only way you can prove to them they have it wrong, if it does you will feel better and that is always good :-)

    I wanted to finish by saying keep fighting it sounds as if you are right on the ball, one of my biggest fears was once I got the label of Lupus they would not look for anything else so if I didn't feel right I pushed. I feel that about you, it's the right attitude.

  • Thanks Twist:)

  • I was diagnosed the first time I went to see my rhueumy who I had been sent to for the arthritis in my knees after begging my doctor to send me she asked me all these questions which I thought was odd because most of them had nothing to do with my knees and how did she know about my sun sensitivity and the mouth ulcers so I still thought it was odd and she just came out with Lupus even before the blood tests confirmed it so I think if they are good rheumy's then they should know what they are talking about. I also noticed some of the Lupus signs in my children so had them tested and two of my daughters also have SLE and Sjorgens so for their sake I'm glad I got diagnosed because they will start their treatment earlier than I have

  • Thank you <3

  • You are lucky you had such an easy time being diagnosed. It took me 15 years of suffering to get a firm diagnosis, all the while my heart and kidneys were being ravished. Definitely sounds like Lupus to me with that bloodwork and your symptoms. Perhaps you just obviously met 4 of the 11 criteria for diagnosis. Good luck and I hope you start to get some relief. One of the 5 stages of grief is denial. Perhaps you are there right now in your grieving process: denial, anger, bargaining, depression and then, finally, acceptance.

  • Well..i was stunned, then stunned sad,really bummed out for 4 days..im ok now. My daughter had a funny response at first, then even a little nasty to me. It was a hot day, she works alot so maybe that. She is the only family i now have, so i felt a little out there couple of days...I think she is getting it now, and afraid of losing me etc...

    PS? I thought when your ANA was pos itive etc., that something else had to go with that to make it more lupus...another certain test. All those rhumetoid factor..dna double strand were all negative...

    PS>>>>Thankyou Joyalinc :)

  • Have a look at the NHS link under the blog headed "ideal NHS care for lupus" from yesterday. You will find a flow diagram of how this disease should be assessed and treated. If you click the little "i" on "Diagnosis criteria" you will see what symptoms get the lupus diagnosis. The tab "Differential diagnosis" show those other diseases that could cause the symptoms other than lupus. I note that one of the alternative diagnosis is autoimmune thyroid - given your thyroid readings, maybe you should ask your doctor when you next see him why he doesn't think you might have that.

    Not that you want to have any of these but if you still feel uncomfortable with the diagnosis, it may be worth asking.

  • HI! i will check that out,sounds interesting..

    While he was taking notes,looking down, he asked about other health issues..i said im hypothyroid,and with my hand showed it been going up and down lots since menopause/paused now....he didnt look up to see my hand movements..

    roughly 4 years ago i hurt my back..they said after xray i had DDD l5s1 its okay, but i told lady my gran had rhumetoid arthritis...she said u should get tested.At that time came back positive ANA,so doc did the nexttest which was negative...he said nope you dont have RA. that was that...i didnt know much then..i might have that result round here somewhere..id like to compare.

  • plaquenil makes my muscles ache really badly so I have stopped it yet again. it makes me feel terrible

  • tin tin49..good to know...they say plaquenil takes weeks to work,but i dunno....I mean it must be kinda workin before weeks are up, because you cant get to 6 weeks and go "Yup plaquenil seems to be working now"....Something is working, and im not doing the prednisone right now...im only popping anti inflams if it feels real bad..i noticed if i stress out, i get instant tired!

  • ps..plaquenil...does it make you not feel hungry? im a food lover, but appetite is sliding...

    Imagine, steroids make u hungry and plaquenil makes u not hungry(I think)....

    Does that bring it back to normal?

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