[lady_redhead]

Hi all

Would it be a lie or dishonest to tell people I have lupus, when what I really have is uctd?
I'm tired of having to explain it all the time.

Feeling blue today. Thought I could do a little spring cleaning, but after having stripped the bed and sofa cover, I'm done for. ...sigh...

Tammie

 

[lazylegs]

Hi Tammie,

It would be much easier to say you have Lupus. You probably have many of the same symptoms and the treatment is the same. Most people aren't going to really understand anyway. I think it would be fine.

Do your spring cleaning in short spurts. It doesn't matter if it is a year long project. Your health is more important.

Take care,
Lazylegs

 

[dixy]

lady

good luck u will still have to explain

go 4 it its the same, dont c any harm:wink2:

dixy

 

[Katharine]

Hi Tammie

There are even plenty of rheumies that tell their patients to say they have lupus when they have an "official" UCTD diagnosis. It is a lot easier and as the others have said, the same treatment and really the same symptoms (maybe simply not enough hard and firm official SLE classification).

Katharine

 

[Clare.T]

Hi Tammie
I am quite sure that many people diagnosed with 'lupus' would have been diagnosed with UCTD by more fussy doctors. It is a technical description meaning there are no specific signs of lupus or any other connective tissue disease. People with UCTD could be far more severely affected than some cases of SLE. Depending who I am talking to and why, I might not even say lupus, I just say 'a sort of arthritis'. Everybody understands arthritis. Few people care or are interested. Go for the sympathy vote !

Cheers
Clare

 

[Pink Pearl]

Like the others, I say go for it. More people have heard of lupus rather than the dx of uctd. Many people have been initially dx with uctd and then move on to lupus. Whatever works.
Sally

 

[sheila t]

I would also just say you have Lupus to people, as more and more now know what Lupus is these days, but you say UCTD, they have not got a clue. Hope you keeping well at present.

Sheila x

 

[lady_redhead]

Hi again,

Thanks everyone for the replies.

Tammie

 

[lady_redhead]

I would also just say you have Lupus to people, as more and more now know what Lupus is these days, but you say UCTD, they have not got a clue. Hope you keeping well at present.

Sheila x

I wish I could say I am keeping well. I have been in a flare since mid-March and my joints are screaming. It seems to be a pattern every spring but this one is really bad. My doc suggested starting methotrexate depending on the results of my joint scan. Have you ever heard of someone with a uctd dx getting treated with something stronger than Plaquenil? The doc didn't want to give me prednisone because it's hard to get off it once you start. Thanks again

Tammie

 

[onetay]

lady redhead,
I would say it is ok as has been posted they have many of the same symptoms and the treatments are the same. I am not sure that many people will know what lupus is any more than they know what UCTD is lol, but give it a try.

 

[lazylegs]

Hi Tammie,

Methotrexate is one of the medications used to treat uctd. If that doesn't work there are other medications such as Azathioprine (Imuran) that can be tried. I hope your joint scan comes out ok.

Take care,
Lazylegs

 

[Pink Pearl]

Hi Tammie,
While it sounds scary to use chemotherapy to treat autoimmune diseases, it is more common and relatively safe. Look down under cytotoxic drugs to get more info on living with chemo. I've been on mtx for 17 years and doing pretty well.
Sally

 

[pollianna]

Hi there, I concur with everyone else. I have an extremely good Rheumy who gave me the probable UCTD diagnosis along with "Lupus like" illness. I fit the diagnostic criteria for Lupus and secondary Sjorens but some of the bloodwork doesn't match up to my symptoms. As far as I'm concerned, he's concerned treatment wize it's Lupus!! I tell everyone I Have lupus as how on earth do we explain the differential diagnostic criteria to anyone? My doctor GP calls my illness my Lupus, it's not much of a difference at first diagnosis. If we don't get worse after a few yrs I believe then we have a good chance of remission.....

Personally I have gotten a lot more visually "diagnosable" recently, more acute and identifiable symptoms, malar rash all the time, mouth ulcers, bone dry schimmers test etc. I firmly believe I'm getting worse and it's only a matter of time before the other antibodies show in my labs. I think you will know which way your going with yr treatment etc as time passes. Hope your flare passes soon :hug: