Subacute Lupus (My Intro)

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Xerond
New Member


Date Joined Oct 2010
Total Posts : 2
   Posted 11/4/2010 12:53 AM (GMT -6)   
Hello, I stumbled across this forum while trying to do some personal research about an episode I've been going through. about 8 weeks ago small red rashes begin to appear on areas of my skin that had recently been sun-burned. Eventually this rash begin to spread to my arms, up my neck, my chest, and back. More recently this rash has spread to my legs but since I've been taking Clobetasol the rash has been subsiding. I have auto-immune history within my family, and had an rheumatoid fever about 8 years ago, at the time of the fever I was never diagnosed with anything, just given prednisone and the symptoms never returned until recently.

I had been in through several doctors before I saw a dermatologist, they did a biopsy of the rash and diagnosed me with subacute cutaneous lupus erthematosus.

I'm starting plaquenil tonight and was curious if anyone here had any suggestions or warnings about the medication, and long term side-effects that I should be concerned about? My dermatologist suggested that the medication would actually make my skin more sensitive to sunlight, and I was wondering if anyone else has heard this?

Also, I saw a rheumatologist but when I asked them if there was any sort of diet considerations that I should make, they had no suggestions. But some of the research I've made has suggested I remove gluten and any excess sugar in my diet, is this a good idea?

I'm also supplementing with Omega-3 oils, Vitamin D, and Calcium.

The rash seems to largely be caused by sun exposure, so I've been trying to take in 0 sun in the mean time. I currently live in Southern California and definitely don't see my self surviving too well with this condition for too long down here. I'd like to see myself move more North, Northern California, Oregon, Washington.

Anyways, glad to be here and to introduce myself, I'm sure I'll be poking around here more often. =)

Post Edited (Xerond) : 11/4/2010 5:38:30 AM (GMT-6)


southerndiva
Regular Member


Date Joined Apr 2009
Total Posts : 122
   Posted 11/4/2010 8:23 AM (GMT -6)   
Welcome Xerond!!
So sorry you have been going through this.  Lupus is such a strange and tricky disease and it is different for everyone.  It can take years for many individuals to even get a diagnosis but the most important thing is that you find a good rhuematologist to treat the disease and to get it under control.  Plaquenil is the drug of choice that they will start you on.  The only problem is that it can take months before you start to feel a difference so you have to be patient.  I've been on it since March of 2009 and it probably took me to that June before I felt like things were getting better.  Make sure you have some food on board before taking it because it can be hard on the stomach.  And yes, you will become more sensitive to the sun, just make sure you wear sunscreen if you have to be in the sun at all.  I know that will probably be a problem for you in California, but I live in Mississippi and have the same problem so I just try to be as careful as I can.  Everybody here has different issues with the disease so you will have to see what works best for you.  I eat pretty much anything that I want, but try to eat a healthy diet of alot of fruits and vegetables as they have anti-inflammatory properties to them.  When your body is tired, make sure you rest because it is one of the key factors of keeping things under control and try to avoid stress as much as possible.  I had to rechange the way I thought about things and what I did in life and put myself first for the first time in life.  I am a type A Personality and that was very difficult for me to admit that I just cannot do it all anymore and need to take care of me first.  It has made a huge difference on how I feel physically.  You will find this such a great place to come for anwers, support or just to vent.  Keep us posted as to your progress.
Hugs and Angels,
Lynnette
 
DX - sle and carpal tunnel
RX - plaquenil, prednisone, etolodac, lisiniprol, cenestin and prometrium, darvocet and fexeril as needed, fish oil, vitamins

sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 11/5/2010 7:12 AM (GMT -6)   
Welcome Xerond. You definately will find alot of support and help from this sit. It has been a blessing for me. I've taken plaquinel for about 3 yrs now. I haven't had any problems with it. You have to make sure you keep your eyes checked like your suppose to with this medicine. Has your doctor checked you for systemic lupus, I have acute cutaneous and discoid. The dermatologist is the one who originally found out that i had systemic also. When my cutaneous acts up it is due to my systemic being active also. I hope all goes well for you. Most important is keep your eye appointments. I'm sure you doctor that put you on it made you aware of that. If not, you need to talk to him about that. I have to have mine checked every 3 mths.
SLE, Discoid lupus, acute cutaneous, acute vasculitis and sjogrens

Prednisone, ultram, mobic, cellcept, plaquinel and ambien.

Xerond
New Member


Date Joined Oct 2010
Total Posts : 2
   Posted 11/11/2010 1:53 AM (GMT -6)   
Thanks for the response I appreciate the advice. Yes I'll be getting my eyes checked soon. I finished using a 60 gram tube of Clobetasol about a week ago, and have been using Triamcinolone since. The good news is that the rash has mostly receded from my face, chest, and arms. But it seems to be spreading down my legs and still on my back. Weird though, cause my legs have been getting absolutely 0 sun exposure. I've been keeping myself out of the sun as much as possible, trying to relax and get sleep, but the rash is still moving. The itch has been steadily getting worse and so far the best remedies that seem to be helping is an oatmeal bath (aveeno or generic) and either of the corticosteroid creams. Its been harder to sleep lately... so to deal with the itch I'll take a benadyrl after or during a bath(to help knock me out), and I can get into bed to sleep before the itch wakes me up. Any advice for dealing with the itch?

Post Edited (Xerond) : 11/11/2010 1:23:00 AM (GMT-7)


sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 11/11/2010 11:44 PM (GMT -6)   
I have the acute cutaneous and have been in a flare with that and the systemic for about a year and half. My rash was horrible, my face, arms,chest, back and legs. I have used soo many creams to no avail. what has finally gotten my to clear is prednisone. I have been on a 40 mg dose for approx. 2 mths. they are trying to taper it and also put me on cellcept to try to get me off of the prednisone but when they took it down my rash is coming back but my rhumy expected this and said if this happens he will up my dose again and stay on it for a bit and then try to taper it slower and also give the cellcept more time to work. Hoping it will. I have alot of scars. mostly from the discoid. The cutaneous hasn't really scarred me that bad. Hope this helps you some. Wishing you good luck and better health. Also for the itching the only thing I found to releive it was benedryl. I took 4 a day. Hope you get some releif soon.
SLE, Discoid lupus, acute cutaneous, acute vasculitis and sjogrens

Prednisone, ultram, mobic, cellcept, plaquinel and ambien.
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, June 19, 2018 12:43 PM (GMT -6)
There are a total of 2,973,271 posts in 326,072 threads.
View Active Threads


Who's Online
This forum has 160951 registered members. Please welcome our newest member, siageorgeee.
415 Guest(s), 12 Registered Member(s) are currently online.  Details
NicHostetler, hamu3l, Balladeer, 81GyGuy, Lapis_29, Kent M., Spring, Carmellasong, KBmom, opugirl, SharonZ, CAdogsRus