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View Full Version : Just Diagnosed with CLE/Discoid Lupus



redlily14
01-29-2008, 11:42 AM
I had a skin biopsy last Wednesday. My dermatologist got back to me last night and told me of the diagnosis. He is starting me on Prednisone this week to wipe out the horrible dime-sized raised red rashes on my face and neck/chest area, and he mentioned Plaquenil for long term management.

I've been been suffering since November with what has been, up until last night, an unknown rash. It's nice to have a name and a treatment plan, but I've got to say I'm almost more afraid of the treatment and steroids than the actual disease.

I'm 24 and so far I do not have signs of SLE, for which I am thankful. I'm sorry to see so many of you suffering from the pain of SLE.

Are there any others out there who only have DLE? Are there any alternative treatments out there?

Regards,
Rochelle

Faith
01-31-2008, 12:06 AM
Hi Redlily14,

Many of us have dle along with Lupus and Fibromyalgia. I react to the sun and uncovered fluorescent lights. I have learned to purchase uv clothing from Coolibar when they have sales and include hats. If you should leave your job; cobra your insurance. Many of us can't get medical insurance privately or life insurance because of the health problems). Did your doctor run ANA, Sed Rate, C-Reactive Protein?

Prior to beginning Plaquenil, you should see an optomtetrist for a Plaquenile Baseline; in fact your dermo should write a referral for it. Some insurance companies will cover it due to it being secondary to a medical condition. Plaquenil is the lowest and least damaging drug to begin with. Your eyes will need to be checked every 6 months by an optometrist to verify there is not any damage to the eyes. Most people who have eye damage have been on Plaquenil for 10+ years.

When I started having joint pain while on the Plaquenil, I began Kenalog (cortisone) shots every 3 months. The max is 4 shots per year; they break through the pain. It takes about 2 days and makes a huge difference in your life. Shots are not absorbed by your organs as is prednisone and are safer. My neighbor was on Prednisone for 15 years and her organs are now failing her. It's sad and breaks my heart.

I hope this info has helped you. If you have any other questions; don't hesitate to ask. Please keep us informed. Take care.

Faith :D

redlily14
01-31-2008, 08:58 AM
Hi Faith,

Thank you for the insight!

I saw my dermatologist this morning to have my stitches taken out and to go over the diagnosis. He mentioned the visual field exams for my eyes. Fortunately for me I used to work in an optometrist office so having someone track my eyes will not be a problem.

I do have a high sed rate, but that is all. I will need more blood tests when I start Plaquenil, which I don't start until mid next month when I stop Prednisone.

This is all so new to me so I really appreciate the tips! I will have to look up Coolibar. I am fortuante (or, WAS) to have my cubical next to a window, but now I will have to have my desk moved. Hopefully that will help too!

Blessings,
Rochelle

Faith
02-03-2008, 12:49 AM
Hi Rochelle,

I hope the info. helped and please keep us informed on how are you doing. Also, keep in mind it takes about 3-6 months for the Plaquenil to build up in your system so you may possibly have joint pain for a while.

Keep receipts from Coolibar, sunscreen, and any UV tinting on your house windows and/or car windows. If you have a dr's note, the items may be able to be written off as a medical expense or through a "cafeteria" pre-paid plan. I love their clothes and usually wear light tank tops under the long sleeve tops in a layered look.

A really good book is by Daniel J. Wallace found on ebay or amazon Lupus for Patients and Families. Many library systems have it too. It's a lot to read and take in so I would suggest purchasing it. I have found at different times in this disease, I can easily look up info since I may have forgotten it.

Another book is by actress Maureen Pratt called Taking Charge of Lupus. It was an eye opener in that it made me think ahead of the future as far as life insurance, and medical insurance. Google and purchase some term life insurance for the future; you may not need it but it will be there if you/your spouse need it later.

Keep us updated on how you are doing. I hope this info has helped and not overwhelmed you. I remember when I was first diagnosed and there was no one to ask questions or who understood.

Take care,

Faith 8)

redlily14
02-04-2008, 08:11 AM
Thank you, Faith, this is definately a big help!

I didn't see this disease on the horizon at all. It just popped up out of the blue in the beginning of November.

I am doing a slow Prednisone taper. Today I started with 30mg after being on 40mg last week. My face is looking better already! The rash is smoother now than it was which is really encouraging.

My asthma and allergies have temporarily disappeared, which is the only side effect from the Prednisone that I can actually appreciate! Gotta love that!

Faith
02-04-2008, 03:23 PM
Hi Rochelle,

I am glad to hear your rash is going down. That's great; remember to use sunscreen on your face SPF50 minimum whether is it sunny or cloudy.

Keep us updated and take care,

Faith 8)

rlbyler
02-05-2008, 09:16 PM
Hi Rochelle,
I have SCLE. I was diagnosed in July. I didn't see this on the horizon either, we thought that the rash and asthma were just sensitivities to the allergies, and maybe the jersey's I was wearing for sports. Come to find out I've been undiagnosed for about 7 years. I can identify with you about the rashes.
How are you doing with the predisone? It increased my appitiete, and I've gained some weight. I'll tell you now, stay active...somehow, and watch....watch....watch what you eat. I'm a huge fan of Mcdonalds, and Mexican food. I've always said I was bound to turn into a french fry or a torilla lady...ha..ha.. Just be careful. I've found it helpful to keep out the soda's in the house, and only keep juice, and bottled water. I prefer the sparkling stuff by Aquifina...tastes wonderful, has the carbination like a soda, but has NO fat, NO calories, and very low sodium.
Lettuce is also a problem....eat less iceberg and more spinich or Romain. I've found it's easier on the stomach and is healthier.
I'm on plaquinel, predisone, imurian, diliauded, zofran, advair, mulitvitamin, and some others. Some may seem unnecessary when you take them, but all in all they each play their part. Keep yourself informed about what your taking....ask lots and lots of questions and why's, and how's. That's what I do with my oncologist, and I've learned so much just asking questions.
I hope this helps you out a little.....I'd be willing to talk with you over the phone sometime if you just need to vent, or want to talk or needing some support. Just let me know...I'll send you my number.

Hugs and hope for all....
Robin

redlily14
02-06-2008, 07:43 AM
Thank you, Robin!

I have had asthma and allergies since I was a little girl. I do very well with Advair 250/50 twice a day for the asthma. My allergies are severe and prescription meds (Singulair) only take the edge off which at this point is good enough.

In mid-July I was sick with a fever/cold, and then broke out for three full days with full body hives. On the third day I went to the doctor and he gave me Prednisone which cleared it up.

Then the face rash started almost on my 24th birthday in November. I thought I was breaking out with adult acne at first. Then it spread just like the typical "butterfly" rash. A few more trips to the doctor, failed steroid/eczema creams, and a blood test later sent me to the Rheumatologist and Dermatologist. I don't have RA symptoms, so the Dermatologist did a biopsy on my chest on my second flare. That's how I found out.

I really hate Prednisone. It makes it difficult to work. I am so loopy and out of my mind that I cannot focus on what needs to be done. I can't wait to taper down to nothing.

On the BRIGHT side, my face is looking great! I have no scaring so far. Just a red, blotchy face that looks okay under makeup.

rlbyler
02-06-2008, 01:15 PM
Hey Rochelle,

Your welcome anytime!

The predisone makes you hyper? loopy? Gosh I wish it did that to me. It just makes me want to sleep or throw up. When I first got on it, it made me sooo sick. I was crappy feeling. All I wanted to do was stay in bed and sleep. It was awful.

I've got the red blotchy skin on my face now...so I can totally relate. I'm 25 (just turned on Jan 1) so I can relate more then you know.

I'm glad your going okay. Let me know if I can help in anyway. I'd be glad to. Remeber if you need to vent or anything my phone line's always open for you.

Love and hugs,
robin

joakris
03-17-2008, 12:01 PM
hey hey guys! i too have finanlly got a dx! well kinda.. i was seen at the universty of minnesota and they think i may just have discoid lupus. so guess what? plaqunel is what they want me to start but honestly i dont know if i want to start something that i am goign to end up being on for the rest of my life?

question? for those of you who have been on this med is it worth it long term? and does it really help with the skin issue? my skin has changed sooooo much since august. so will it make it look healthy again?

Faith
03-17-2008, 10:06 PM
Hi Joakris,

Prior to beginning Plaquenil, get a plaquenil baseline from an opthamologist. Check-ups every 6 months as it can effect the eyes; though usually not until you have been on it 5+ years.

I have taken Plaquenil for 2 years and it is worth it. It helps with joint pain and inflammation. I still wear uv clothing.

I hope this helps.

Take care,

Faith

sits_inthe_corner
03-18-2008, 06:09 AM
joakris

I'm new to taking plaquenil...it hasn't kicked in for me yet. But those who like it...like it alot lol.

I just dont know yet if it well help me. But so far it's not hurting any. My doc said to take both pills at night before bed with a little tub of yogart. That helps to avoid the stomack upset and dizzyness that can occure. I sleep through the worst of it. So when I wake up in the morning I feel like my usually self. If you have any problems with the plaquenil speak to your doctor right away and let them know. I'm sure glad I did. I was going to stop taking the stuff, but now I dont have to stop.

morning star
03-18-2008, 10:13 AM
I've been on the plaquenil since August 07 and it's helped tremendously with my joint pain, unfortunately I still have the muscle pain but my Dr. just started me on Imuran so hopefully it'll kick in soon, I also have Asthma I'm on Advair 500/50 and Proair it works great but I can't miss a dose or I sure start to feel it. I've started to have chronic headaches and migraines I see my Rheumie today so I'll mention it, I'm starting to question APS since I also have livedo rash. Oh and it took the plaquenil 3 months to kick in for me. :)

joakris
03-18-2008, 02:55 PM
thanks for the info, unfortunatley iam some how now alergic to dairy! ever since this whole weird thig called lupus i get the bg's from cheese pizza milk .. ect.. so the big tub of yogurt doesnt sound to pleasing to me! = 0 I think iam just gonna wait as long as i can and just deal with the pain and the weird spots that just pop up on there own~

sits_inthe_corner
03-18-2008, 03:23 PM
joakris

If you cant tollerat dairy it doesn't have to be yogart....you could have toast or just about anything, point is dont take it on an empty stomack. As for the spots...you'll probably need a cream for that keep going to the doctor about it till they see it's an on going problem..sometimes it takes a few visits befor they realize that this isn't something that is going to go away on it's own.

Hope you're feeling better :)

joakris
03-28-2008, 01:44 PM
Thanks sits!
I have a derm appt next week so im gonna go over all my otptions with her and get her opinion... I will admit i am scared as to how the summer will be!

sits_inthe_corner
03-28-2008, 01:52 PM
Hi joakris

:painting: I used make up and ALOT of it hahahahaha we finally found a cream medication that has cleared me up...but I have to use it all the time to keep it under control. The worste part for me was the pain...my face had never hurt so much...and I've had the face full of sunblisters lol.

I used to work as a life guard as a teenager! Duh! not a good job for me. I was soooooo sick all the time....now I can take a wild guess why?

Lupus + direct sunlight = TROUBLE

joakris
03-28-2008, 02:02 PM
you know i never thought it might be sun blisters! hmmmmm.... and my face hurts as well.... its really dry but yet i have acne looking bumps >? that makes no sense? people get acne from oily skin and clogged pores i have no oil and noramaly clear skin!
I only breakout, maybe once a month! and i think any woman knows what i mean! =)

sits_inthe_corner
03-28-2008, 02:11 PM
It could be anything joakris

Rosacea is another possibility...I have it and let me tell you it hurts like the dickens...but the cream keeps it under control.

I hope you get answers quickly cause it's very painful :(

:shock: edited to say...ummm how can I phrase this...that statement up there was supposed to read differently...as in hurts like the D _ ckens.

It would seem I triggered a word filter :D :lol:

joakris
04-06-2008, 04:09 PM
Okay so I went to the derm! she thinks it looks like acne! so she gave me some cream and so far its working! hopefully this will help.
Also I went to the alergist and foun out that I am alergic to eggs! and penuts, and he thinks Im lactose intolerent! so all week end I have been tryin to figure out what the hell im gonna eat! =) meat and potatoes! =) lol

sits_inthe_corner
04-06-2008, 04:22 PM
wow joakris

I guess it's good that you got some answers...

It's difficult juggling around with what you can eat and what you cant.

I'm quite worn out with it, so I'm looking for ward to speaking with a nutricianist. I need help preparing a menu that makes me happy and is healthy. I'm quite willing to pay someone else to figure out my needs and try to fit it to my life style.

I get so frustrated when I'm in the grocery store.

I'm glad the cream seems to be working for you. If it fails to continue working for you, head back to the doctor's and let them try to figure it out.

There was a cream that I used called spector. It was actually quite good. But terns out it wasn't what I needed.