[TallDoode]

Hi everyone,

My Rheumy and I are trying to figure out a timeline since this appears to be my first flare ever, and I have never, in 45 years of life, had any symptoms at all of Lupus. Not once.

He mentioned that usually the facial butterfly appears quickly. I am looking at pictures of myself starting in July of last year. I had a red spot on my nose the size of a dime and my ears were "flaky". I spent a lot of time in the sun and have never protected myself (like an idiot, i know). The end of October, i had some dime size spots on my cheeks (diagnosed as rosacea as I mentioned on another thread). Thanksgiving the spots were the same as in October and I had some small red spots on my eyebrows. I felt pretty good during that time except for a cold that wouldnt seem to go away. No muscle aches and pains or joint pain.

By Christmas the rash had spread to more of my cheeks but still only about the size of a quarter and it included the space right in front of my ears (Rheumy mentioned he had never seen "The Rash" appear on that part of the face). The only other symptom I had was fatigue. Going to bed at 7:00 pm some nights and sleeping till 7:00 a.m. but still feeling tired. No joint aches/muscle aches or anything like that.

After New Years (still fatigued) I went into the hospital after passing out at a Quick Care (not sure why), and after five days there and lots of tests, they diagnosed Lupus due to my rash and put me on Prednisone. By that time, my rash had gone "crusty". A couple of weeks later, it was mostly gone except it appears to have scarred my cheeks a bit since I can still notice it.

So... long story short - does this sound like the same story as those of you who have had rashes? Starts out small and grows over the space of a few months? Just for fun I have attached a picture of the rash on 1/9 when I got out of the hospital.

Thanks,

dave

 

[Katharine]

Hello Dave,

As far as I know people's "rashes" can be as variable as the illness itself. Some people may never even have a malar rash, others have quite a severe one, still others a rosy glow...

For my part, my rash hardly shows since starting medication.

Time lines are hard to establish. Many people had signs (or even more severe symptoms) many years before diagnosis.

Maybe others can help more,
Katharine

 

[TallDoode]

Time lines are hard to establish. Many people had signs (or even more severe symptoms) many years before diagnosis.

Maybe others can help more,
Katharine

Hi Katharine,

That is one of the reasons he wants to make sure about my case. He stated to me that usually by the time he sees someone, they have been "miserable" for years with unexplained illnesses, pains, weakness, rashes, etc. etc. etc. By the time they are diagnosed it is almost a relief. The fact that I was diagnosed the very first time within a week of "getting sick" is either a miracle, extremely lucky or we are missing something. Especially since I am 45, male and all my roots are in Scandanavia for the last 1000 years. Not exactly fitting the Lupus profile. This Rheumy is catching me at the end of my flare (I changed doctors midstream) and after I have been on meds for two months (Pred and Plaq). So his take is going to be to get me off the Pred (down to 5mg now) and keep me on the Plaq and "see what happens next". I agree with that course of treatment as I dont like being on meds much. But, that being said, now that I am down to 5mg Pred I need to know when/if I am flaring again and some have said ther first indication of a flare is the dreaded rash is back. But I dont want to rush to the Rheumy every time I get a new zit! .

Anyway, thanks for the reply and hopefully others who have the rash as one of their symptoms will chime in.

Cheers,

dave

 

[ElephantEyes]

Hi Dave -

My rash was my first symptom of lupus and, like you, I was also initially diagnosed with rosacea. My first rash started on my forehead and over the course of 4-6 weeks spread onto my cheeks to form a more classical, raised butterfly rash. The only other symptom that I had at this time was some fatigue.

Have you been referred onto a dermatologist? When it became apparent that I wasn't responding to the rosacea treatment, my GP referred me to a dermatologist who immediately diagnosed me with discoid lupus and confirmed this with a skin biopsy. (On a side note, I actually have systemic lupus, so I was either mis-diagnosed or it progressed to SLE).

Similarly to Katharine - now that I am on medication, my rashes are not as severe in appearance.

Hope this helps -

Nellie

 

[Katharine]

Ah right I see the reasoning

The first indication of a flare is very individual. Again, many people won't get the rash at all. My rash disappeared completely with plaquenil but had, in any case, only appeared "clearly" after about 8 years of being "miserable" and some periods of pretty severe flaring.

My first indications of a flare are aching joints, muscle stiffness and aches, night sweats, low grade fever, crushing fatigue (I'm always tired but this is different). I also get a "bruised" feeling all over my body where my skin is very painful to the touch (this however can also happen for only a couple of days and if I'm careful not "develop" further). I also get lots of severe tendon pain, nerve pain, itchy rashes that come and go (but not malar)...

For other people that would be quite different. Some people flare very severely with next to no warning (often ending up in hospital). Some people flare for short sharp periods. Others flare for longer periods like I do.

I hate to say it here but there are no simple answers. It's good that the rheumy is looking into other possibilities while being cautious and keeping you on plaquenil.

Sorry to be so vague but where lupus is concerned there is no entirely "typical" answer and no "typical" patient.

Katharine

 

[lin]

i was the same as Kathryn

My first indications of a flare are aching joints, muscle stiffness and aches, night sweats, low grade fever, crushing fatigue (I'm always tired but this is different). I also get a "bruised" feeling all over my body where my skin is very painful to the touch (this however can also happen for only a couple of days and if I'm careful not "develop" further). I also get lots of severe tendon pain, nerve pain, itchy rashes that come and go (but not malar)...
...............................................................................................

no not everyone gets rashes we all different Lin

 

[ElephantEyes]

Again I have to agree with Katharine and say that it is very difficult to define anything typical with lupus.

However - I was diagnosed very, very quickly. I was dx with discoid lupus in Dec 01, started to feel unwell in February 02, flared severely and ended up in hospital for a fortnight in April 02 and was diagnosed in hospital. I didn't actually see a rheumatologist during this period at all, or for quite some time after.

I guess this isn't as quick as your diagnosis, but I couldn't say that the diagnosis was a relief for me or that I had been miserable for years with unexplained aches and pains. I know this contrasts with some of the experiences that people on this site have had.

I know what you mean about running to the rhuemy every time you get a zit though :lol: I can be a bit obsessive about checking my skin now!

HTH

Nellie

 

[onetay]

Dave,
I have the rash and it can take me like 5 minutes to start getting it. Mine grows with sun, stress, and other nice things like that. I am just one person so it might be different for others on the site. A lot of things can make the rash increase in size, shape, and sometimes color even. It is possible that you had a long running contact with your stress trigger. I am sure that the doctors will figure it out in time and will be giving you something for help very soon.

 

[keebler]

You are not alone. I was diagnosed one week after the blood tests came back. I had gone in with aching arm muscles and just feeling tired. At the end of the visit I said oh by the way my brother has sle. So I was tested for RA, lymes and lupus. I guess you would say it was pure luck that I was disagnosed with lupus.

I had the malar rash for years though. I had gone to a dermy that said I had rosacea put on meds and sent on my way. (that was like 10 yrs ago) It never really went away all those years. Now my rhumey says I had the typical malar rash.

Take care,
Lyn

 

[x_claire_x]

HIya.. my first sign was the rash that I thought was a rosy glow and due to changing hormones!! I must have had that between 5-10 yrs before the diagnosis of MCTD last Nov following severe joint pain, RNP positive etc etc. Alcohol, sun and stress made it worse, people sometimes said I had sunburnt my cheeks... when I hadn't. Used to just annoy me, but wish it had stopped at the rash now! The redness has decreased with plaq and pred etc, still get red at times and that is a sign to me to slow it down....again It took five months from joint pain to flare to hospital to definite diagnosis so I was quite 'lucky' it was fairly quick,,, wish you well.
Claire X

 

[x_claire_x]

PS

PS.. I am 44.. just!