Hello and :welcome:

Diagnosis can be a confusing time. It sounds as if your rheumy does think you have a connective tissue disease (of which lupus is one) as he has started you on plaquenil (BTW that can take a good while to work fully so be patient) and he wouldn't have done that if he didn't think you did. It is sometimes hard to give a firm lupus diagnosis in the absence of positive blood work but it's good that he sent you for a skin biopsy. I haven't heard the results expressed as you have written here but a skin biopsy can be very useful in diagnosis (coupled with clinical signs and symptoms). I myself have a lupus diagnosis due in part to a skin biopsy but mine was expressed differently.

What your results do say is Lupus Erythematosus which should mean SLE and that would tie in with your symptoms too which are more SLE than DLE.

Some rheumies may be hesitant to diagnose lupus unless 100% sure (which can be difficult sometimes) for various reasons including you obtaining different types of insurance and so on. In that case they will then often give a diagnosis of Undifferentiated Connective Tissue Disease meaning that you have a connective tissue disease but he can't say with certainty which one. The treatment is exactly the same as for lupus.

It sounds like you have a good rheumy and are well on the way to finding answers. I know it can be very frustrating and stressful but take heart, you will get there and plaquenil should make a big difference once working fully :hug:

Katharine

 

Hi and welcome to the site. Katherine has given you excelloent advice, I can't add much except I hope your next appt goes well!

 

Thanks Katharine for the response.I do think I have a good Rheumy,and Dermy also.It just get's so trying at time,but I refuse to give up!!I have been thru so much,unanswered questions,and so uncertain about what they might or might not find.But I am sure that everyone here has been down this long road.Thats is why I hope to meet people here and learn from those that have been there.I hope that when I do go back to see rheumy,he can explain things to me.But I could tell the day I spoke with him about the biopsy,he was uncertain about a lupus diagnosis,even when he read the biopsy results.I guess I will have to wait and see.It is just strange that when the dermy came into give my results he said,what you have on your skin is lupus,and I want to see you back after you see your rheumy.So I did ask the dermy is only confined to the skin,he answers,well with all the symptoms you have the rheumy can help you there.Did not tell me what form,but I do not have sores or even lesions ,it's just a rash that looks flat,red and blotchy.Yes I have heard that it may take some time for the plaquenil to begin to work,but I am hanging in there with it,so far no side effects.I guess maybe you were right I can't see rheumy putting me on the med,and not having some kind of idea what it maybe.Can I ask,once you were dx with it,how often do you have to be seen by your rheumy,in the past my rheumy seen me every 3-4 months I think maybe the reason for that was he was trying to see me when I was having alot of the symptoms,and flares.Again thanks for you respnse.

 

Welcome to the site Postlady,

My appointment times vary depending on how the disease is doing. When I am doing great my rheumy lets me go 4 months, much less if not. He does stipulate though to call if I have any problems between appointments.

Good luck with your next rheumy appointment.

Take care,
Lazylegs