[Sparkygirf]

Hi Everyone,

I'm F, 39. Have been to Doc in December 2008 with what I was told was chilblains - they are still there, prescribed "potent" cortisosteroid cream - and Lupus was mentioned again. Now I have to say again - I was diagnosed with Uveitis (eye condition) 20 years ago and this was conctrolled with Cyclosporin (immuno-suppressant) until i went into remission following the (10.5 week premature) birth of my son 10 years ago - but both Lupus and Sarcoidosis were looked into and eventually dismissed - However now looking at possible tools of diagnosis a lot seem to fit - the rash i have on my hands, i had dreadful migraines as a teenager, which went away, weight loss, dry mouth, sudden (in last three months) on-set of "ashma" , lower back pain, extreme tiredness, very cold hands and feet, menstrual irregularity (have not has a period for over six months now), easy bruising, extreme photosensitivity on hands and feet.... gosh - It seems like it all ties up to me..
i'd appreciate someone elses take on this please????
Thanks

 

[Katharine]

Hello Sparky and welcome

Those chilblains sound very OUCH. I used to have severe chilblains when younger and they're no fun at all

You certainly have symptoms that warrant investigation and it is good that they are looking into lupus as a possibility. Whether it is actually lupus or another auto-immune disease may not be as easy to determine. I'm sure that you already know that it is a very complex disease with many facets and very hard to diagnose.

I presume that this "investigation" and "mentioning" of lupus involves you going to see a rheumatologist? If that is not the case then I would try and get a referral to one that specialises in auto-immune disorders (not all do).

You may yet have to arm yourself with patience unless you have very conclusive lab results coming back. If your bloods are negative it might also be worth asking if they could do a skin biopsy (this can be done on unexposed/unaffected skin and can be an aid to diagnosis when bloods are inconclusive).

I'm sorry that we can't bring you any instant answers - of only it were that simple...but we'll be here for plenty of support and advice as and when you need it.

Keep us posted on how you're doing.

Hugs :hug:
Katharine

 

[Sparkygirf]

Thanks Katherine,

Hi Katherine,

thanks for answering my query.
I think I feel a little fragile as living with Uveitis was (is) horendous, with the worry of losing m sight a distinct possibility.
I also wondered about taking immonosuppresants for such a long time. I wonder if they would mask/aid another immuno - problemo!!! Or actually eventyually cause such a problemo...
I guess I just got scared when Lupus was mentioned again, and also concerned that because i had uveitis diagnosed, perhaps something else was going on that didn't get investigated further??? From what I've read Lupus is a real toughie to confirm at the best of times, so if another diagnosis presented itself then it would be disregarded??
Shall await the dermatologist appointment, and the results of x-ray of ankle... another wee question, my doc said very thin ankles and wrists were an indication of Lupus... is this something you have heard??
Many thanks again,
Hugz an that

 

[Katharine]

I'm no expert here but I certainly wouldn't think that the immunosuppressants would make lupus more "likely" or "aid" it. They are used to treat lupus, so if anything I would think that they would make the symptoms less severe and may even make your bloods better than they might otherwise have been.

I have never heard the thin ankles/wrists theory. Doesn't mean it's not true... but just never heard it. I have pretty "heavy" bones myself.

It is often true that if something else is found then lupus may be disregarded but that might be rightly so as lupus is the disease that mimics so any others.

I believe lupus may also increase chances of uveitis so maybe you have had more of an underlying reason all along. In any case, you may have a battle ahead of you but don't give up until you get some answers whether they lead to lupus or not.

bye for now,
Katharine

 

[Katharine]

P.S. I'd also ask for that referral to a rheumy.

 

[keebler]

Hi Sparky,

Welcome to the forum.

The one thing I can add is take pictures of your rash. Write down when it appeared and how long it lasted. Don't be surprise if he keeps your pictures.

This board is full of updated information and very caring members who will share their experiences with you.

Love,
Lyn