Newly diagnosed and angry

girlsquirrel71 · Posted: Wed Nov 02, 2005 4:29 pm Post subject: Newly diagnosed and angry

I recently developed a rash on my back that looked like ring worm, I was tested for lyme titer, came back negative, was sent to a dermatologist that took a biopsy and blood work came back + for lupus. I have no other symptoms except this rash that is now starting to cover my body, as places heal it pops up in other spots. I had additional blood work done that I am waiting for results on and another biopsy that I was told my insurance may not cover, I am type 2 diabetic on metformin trying to control this rash with a steroid cream and plequinil (sp) sorry. I love the sun and gardening and being at the shore, I feel like I just got handed a death sentence. I dont understand this ANA thing I see posted. My dermatologist is an a** and told me so matter of fact I thought he was lying. I also am an EMT and I am afraid now to even run on an ambulance.

I need some info, anything that works for this rash??? What is a normal ANA what is considered severe?? what kind of results should I be hoping for with additional bloods for cardiac and kidney functions??? any info would be helpful, I work for 9-1-1 and understand stress can be a trigger for out breaks ????? HELP!!!!!!! #Mad

hatlady · Tiger Joined: 16 Oct 2004 Posts: 864 Location: Illinois

Getting a diagnosis is so hard - especially when you're doc isn't in tune with how you're feeling and how you'll feel hearing it. Hugs, dear, though they're coming a bit after the fact.

Lupus isn't a death sentence for most of us. It is a condition that we can live with - in many ways like your diabetes. We have to take care, we have to watch for issues, but we can live a very normal life in most cases.

You have a heavily physical job, but since your'e probably already in fantastic physical shape, you will probably be OK at this point. Monitor how you feel, talk to your doc. You take appropriate blood/body fluid ("universal") precautions when you work with patients, so you should be at no more risk now of contracting illnesses than you were before. One caveat - if you know of people getting immunized for smallpox - STAY AWAY FROM THEM for a bit. I think the recommendation is 10 days.

Sun may be a trigger for that rash you've got - many of us are sun sensitive and sun can bring on rashes and flares (worsening symptoms). Get yourself a broad brimmed hat - not one that you can see the sun through. Wear high spf sunscreen AND long sleeves, slacks.

Do some reading. I think SaySusie has linked some great places to find information on test results. Also visit lupus.org, which has great info, and even WebMD.

The anger will pass in time, your reaction is understandable - you can vent here, we all understand and we all have been where you are! Hugs and welcome.

TracyDawn · Posted: Fri Nov 04, 2005 11:55 am Post subject:

That sounds like the same rash I had months ago. We (my primary and I) have known I had possible lupus for 7 years but that rash is what got me diagnosed. The steroid creams they gave me didn't work for it. What finally got rid of it was staying out of the sun completely. Yes it sucks but it worked. My primary first thought it WAS ringworm, then it moved up my back and finally covered the whole top half, it was GROSS!!! And itched like crazy. {{HUG}} I am so sorry you were diagnosed with this, and even sorrier your dr was an *Horse's Patoot* about it. If you don't like him, find a new one. YOu need one that can be sensitive to your feelings as well as help you deal with it medically. For me, getting the biopsy and diagnosis was a relief because "IT" had a name. The rash on my back was just one of many symptoms for me and after 7 years I'd heard it all. But out of the blue like that I imagine would be a shock to anyone. As Hatlady said, it's not necessarily a death sentence for us to have this, it's easier to think of it as a wake up call to enjoy life at a more leisurely pace and appreciate the good days. Smile

You came to a great place for information and support. I hope you like it here. {{HUG}}

girlsquirrel71 · Posted: Fri Nov 04, 2005 4:40 pm Post subject: Reply to TracyDawn

Thank you so much for the words of wisdom, I was off the prednisone for 5 days and the rash seems to have a mind of its own now. This may seem silly but you may know, if I have to stay out of the sun completely will a tanning bed also bring on the rash. I got my lab results today and it seems that mine is contained to the rash form, no major organs effected. Thank goodness, the steriod cream helps a little but not much. I was also told when the rash fades I wont have any scarring. I took an oatmeal bath tonite, because its on my hiney Rolling Eyes

and cant tolerate undies at this point, I am hoping the redness and hotness clear by monday so I can sit at work for 8 hours. My rash started on my back now thats clear and its on my belly arms and legs and butt. Is this what you experienced too?? I am praying it stays off my face, I have a little right now, but I am hoping. Do you use sunscreen daily for preventative, I mean its hard to stay out of the sun. We have a hot tub and I hope to use it again, but not looking as attractive as I due now. What worked for you??? thanks again Very Happy

Maryann

hatlady · Tiger Joined: 16 Oct 2004 Posts: 864 Location: Illinois

No No NO on the tanning beds! You could throw yourself into a major flare! It is the UV rays that are damaging to us - and tanning beds concentrate them! If you want to look tan, consider that spray on stuff - but no sun, no tanning beds.

You might try a little 100% aloe jel on the rash to cool it - again, ask your doc if it is OK, and try a small patch first to be sure you aren't allergic. I found it very cooling and healing. It doesn't replace the prescription creams, but is a wonderful low cost palliative.

High (30 or higher) SPF sunscreen, properly applied and reapplied. Use a moisturizer for your face that is high SPF as well (I use Eucerin SPF 30, there are others that have that level as well) If you wear makeup, look for SPF 15 or above. Even lip balm.

And you've already heard my litany on hats. But just a reminder, wear one with a large brim when you're outside! Especially when you have a rash anywhere on your body - that UV will only make it worse.

Unless you're wearing sleeves of thick cloth, wear sunscreen on your arms under your blouse.

Hot tubs - if they're the kind with lots of chlorine, it might irritate your rash, it is hard to say. You might want to ask your doc. Long hot baths (with the oatmeal bath stuff and LOTS of bubbles) are heaven sent, in my opinion. Neither a waste of hot water or time! Laughing

Hugs, dear~

Ariel · Posted: Sat Nov 05, 2005 4:27 pm Post subject:

hatlady · Tiger Joined: 16 Oct 2004 Posts: 864 Location: Illinois

Ariel, I like your style! I unfortunately don't have a jaccuzzi, but I DO have all the candles, bath salts, etc. I buy the generic "Aveno" oatmeal bath stuff - but am going to try your version of plain oatmeal in a nylon. Cheaper, and sounds like it could work even better! Very Happy

The "Kiss my Face" line is wonderful - I find that I use such little amounts that the seemingly high price really isn't so high.

Hugs, and I hope Maryann/girlsquirrel71 doesn't mind us hijacking this post for a comfort-seeking aside! Laughing

girlsquirrel71 · Posted: Sun Nov 06, 2005 7:07 am Post subject: Kiss my face

Where can I find that line of product??? I decided not to try the hot tub until my rash is under control, and I guess I will stock up on the fake tanners!!! thanks for the info!!!!! Wink

Ariel · Posted: Sun Nov 06, 2005 8:44 am Post subject:

I get them at Wild Oats which is a chain natural foods supermarket. If you have something like that (Whole Foods, whatever) they should have the Kiss My Face stuff. It's also fairly inexpensive.

If you cant find it locally you can shop online at http://www.kissmyface.com/

I am particularly fond of their almond oil soaps, etc. except they make me crave marzipan! Laughing

girlsquirrel71 · Posted: Sun Nov 06, 2005 5:43 pm Post subject: ok yet another question

Ok does this rash ever end, it started on my back and is now everywhere. I am taking the oatmeal baths, creams, and steroids, does it ever end???

Ariel · Posted: Tue Nov 08, 2005 12:23 pm Post subject: Re: ok yet another question

girlsquirrel71 · Posted: Tue Nov 08, 2005 2:44 pm Post subject: appt

I have my rheumatologist appt tomorrow at 330. I cant wait to hit him with all my questions. I am looking particularily attrative right now with this rash on my face. I am so depressed this stinks!!!! Sad

TracyDawn · Posted: Wed Nov 09, 2005 4:17 am Post subject:

Girlsquirrel, good luck at your appt! Or did you already have it? If so, I hope you got some answers. The only thing I can recommend on the rash is STAY OUT OF THE SUN! When mine wouldn't go away, I literally stayed inside every chance I could and was only out to walk to my car, etc. It has finally almost gone away on my back. It never goes away on my face completely but I can deal with how it is now, um, until it starts itching. dh says I am going to scratch my nose off one of these days cause that is always where it starts. Wink

{HUG}

girlsquirrel71 · Posted: Wed Nov 09, 2005 3:45 pm Post subject: finally good news!!

I had my rheumotology appt this afternoon. He confirms the other tow doc's that I have subcuteanous lupus, non scarring. I am back on a heavy dose of prednisone and plequenil, and I am off from work if I chose for two weeks til my follow up. My face finally broke out today, I broke down at work and they sent me home. I was holding out hope that I would not break out there. Its so depressing, but in the scheme of things it could be so much worse. Thanks to everyone who has given me kind words and support, I couldn't get through this with out you. Wink

yogiit · Newbie Alert Joined: 10 Nov 2005 Posts: 2

The best thing you can do for your rash is relax and take care of yourself. I got it when I was 15 and had to drop off of the tennis team. I thought the rash was an allergic reaction to the sun or to the anti-biotics I was taking for the sinus infection I had at the time. Although the doctors never confirmed it was related to my lupus (I was unofficially diagnosed at 11) it is so obvious to me the more I learn about this disease. The rash has never come back for me (knock on wood...) but I was absolutely miserable that summer...while I used to be able to play tennis in the mornings and spend the afternoons at the pool all summer, I was stuck inside, covered up, watching tv (gained a few pounds because of it, too). Mine started on my scalp and face, and slowly moved down my body and eventually (after a few weeks) it was on my lower legs and feet...then I went on vacation with my family, and even though I kept my legs covered with a heavy towel most of the time, the sun started bringing it back up my legs. SO, take it easy, take lots of baths, and try (I know its hard) to not stress about it...that will only make it worse! And drink lots of water Very Happy

I am convinced that water helps EVERYTHING!