[notdiagnosednfrustrated]

I'm writing because I have had many symptoms consistent with lupus over the years: 3 miscarriages, positive ANA after miscarriages in 2000, fatigue, hair loss, joint and muscle pain and most recently three weeks ago, I had a strange red rash over bridge of nose and cheeks after being exposed to lots of sun in Nevada. The rash started with irritated swollen eyes, a rash over my left eye and then within 24 hours it was a bright red warm rash over bridge of nose and cheeks. Within 2 days and upon return to NY, where it was overcast and rainy, the rash suddenly disappeared and just left a bit of discoloration. Saw my PCP and then a rheumatologist. Blood work was done. Turns out I am now testing negative for ANA so doctors are skeptical about lupus. Is it possible for lupus patients to have a positive ANA and then have a negative one later?
On some days where it is sunny out I swear I see a faint red rash over bridge of nose and cheeks in exact place the bright rash was when I was in Nevada. Would my rash return with lupus but be lighter than it was the first time?

Help! I'm not sure what to do next.

 

[Katharine]

Hello and :welcome:

I'm sorry to hear that you are having such a hard time finding out what is going on.

Yes ANA can go negative but often does so following treatment or if it was down to something else in the first place. Can you remember how high it was (the titre)? Low positive ANA can be caused by many things.

Despite the absence of ANA your other symptoms still merit investigation. What is the rheumy saying on that score? Is there any plan for treatment? For example, even if a firm lupus diagnosis cannot be given some rheumies will treat you for UTCD (Undifferentiated Connective Tissue Disease) and that treatment is basically the same as the one for lupus but the diagnosis of UTCD doesn't carry the same heavy consequences on things like insurance that lupus does.

bye for now,
Katharine

 

[KarolH]

Welcome to the forum.

Sorry your having a tough go of things right now and being in Limbo land without answers when you do not feel well is not fun. A lot of us have been where you are prior to getting a diagnosis.

My ANA fluctuated from negative to positive and negative again for some time. Now it is always positive. I do hope you get things sorted out and get some answers. Once you do and get on medication you should start to feel much better.

Join us in the chat room sometime. Hope to get to know you better and keep us posted as to how you get along.:wink2::wink2::wink2:

 

[onetay]

Hi and welcome to the site. It seems that you have been having a time of finding out what is going on with all this. I can understand why you would be confused, and maybe now you can understand why it is so hard for doctor to dx lupus. I like to say it has a mind of it's own and likes to play hide and seek with other like diseases lol.

I would say that depending on what the numbers were and with the ana it is very possible. This is a question that I would be putting to my doctor. None of mine have ever took affence to me asking questions like this as I am the one that needs to know why. You can not help with your treatment if you don't understand what they are thinking or doing.

The rash is something I get all the time. It started out with sun and I had to be in it for awhile. Then it got lighter but covered more areas, and then went to a darker color in some areas and lighter in others. Finally for the most part if I am in the sun for more that 10 minutes well let's just say they don't have that color on forms to fill out lol. I can not even sit in front of a windowany more with sun coming in it. Just for fun watch your uv ray count for a week or two and what it is the days you have to be out in it. The higher the count the more the rash, the lower the count the lighter and less the rash is. Well that is what I have found out over the years but now it does not matter as any sun is like poison to me.

I hope you start doing better and let us know how things are going with you please.

 

[notdiagnosednfrustrated]

Thank you for response on pos to neg ANA

Thank you so much for your responses. I have asked my rheumatologist about the possibility of a lupus patient having positive then negative ANA results. He said he too would want to see how high the titres were on the original ANA test after the miscarriages. I have since requested my medical records from New Jersey (where I was living at time of positive ANA). I am also just using aspirin and ibuprofen for muscle/joint pain. I can't really treat the fatigue I feel. I just try to get as much rest as possible. And the skin rash on cheeks and nose has subsided for now.

thanks again for your prompt replies. I'll keep hoping and praying that it is not, in fact, lupus. But, I will also be vigilant with my rheumatologist about finding some answers. thanks again.

 

[doris999]

Welcome,
I would like to add, take pics when you get the rashes, and write down all your symptoms that you have, even trivial ones & also do a pain scale- 1-5 or 1-10, ten being the most painful, then the Dr can see how much pain you are in on a daily basis.
I hope this helps.