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BlessedBe
Regular Member


Date Joined Dec 2007
Total Posts : 24
   Posted 12/27/2007 3:37 PM (GMT -7)   
Does anyone else have the discoid rash instead of the "butterfly" rash? What has worked on it for you? I've described mine below in the post 'many questions'
 
Would love to hear any suggestions!
Wife, Mother, Nurse
SLE with all the additives, sjorgens, raynauds, RA etc.
Plaquenil, Effexor, serequel for sleep.
Refusing Steroids


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/27/2007 6:31 PM (GMT -7)   
Hello BlessedBe!
 
Well, I was going to suggest prednisone, but I just read your signature line and you're refusing those! skull Hahaha!  So..... Hmmmm.  Steroids are the best thing for discoid lupus, from what I've learned.  I don't have very much skin involvement with my lupus, which is probably because I'm on prednisone.  I'm sure there will be lots of responses to your question.  If you don't get much feedback this week, it's only because of the holidays.  The forum is a lot quieter during a holiday. Oh, one method that does work for my occasional skin flare (eczema) is a topical steroid cream.  Prescription strength. 10% cortisone.  It works like a sun-of-a-gun.
 
Good to meet you!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


BlessedBe
Regular Member


Date Joined Dec 2007
Total Posts : 24
   Posted 12/28/2007 10:14 AM (GMT -7)   
10% cortisone...now there's an idea. Thanks Ginny! My whole non steroid stance comes from when I was 15 (in high school) on prednisone and was laughed at for months, it sucked. You'd think at 34 I'd grow out of that eh? Plus from working on an oncology floor I see so many steroidal issues it makes me wonder. Wonder if I could do it prn (as needed)?

Thanks for 'listening' :)
Wife, Mother, Nurse
SLE with all the additives, sjorgens, raynauds, RA etc.
Plaquenil, Effexor, serequel for sleep.
Refusing Steroids


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/28/2007 4:03 PM (GMT -7)   
Hey Be . . . most of us make sure that we are ALWAYS taking calcium supplements even when we are not on prednisone because in the even that we do need it, we want our bones in good condition to begin treatment. Just a thought. And, if you do need to use prednisone, be sure to be aggressive immediately with building bone.

I hope you do find some relief from your discoid patches. I think you'll find a combination of meds and lifestyle changes will be a good combination, but most of us here really don't know much about discoid lesions. I really feel for you.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 12/29/2007 4:12 PM (GMT -7)   
Oral steroids are  rarely used as continuous therapy when the lupus is confined to the skin unless it is to reduce disease activity initially. The best medicines for skin are usually the anti malarials, first Plaquenil then if that is not enough Quinacrine should be added.
 The Plaquenil can be exchanged for Aralen which is similar but rather stronger. The two work together and have slightly different effects so they make a powerful combination.
 
 In fact all the medicines used for systemic disease can also be used for skin lupus that doesn't respond to the usual, but the very toxic medicines like Cytoxan are rarely used because of very serious side effects.
 
Drugs that wouldn't be used for SLE are Thalidomide  or Accutane. Topical steroid  ointments have to be used with great caution very little and only for short periods as band aid because they can damage the skin. Other sorts of ointment that might help are tacrolimus and pinecrolimus. There are also intralesional  steroid injections that help some people. The very first therapy for most is the strictest avoidance of UV rays and  thorough protection if exposure is unavoidable.
Stopping smoking also helps as well as techniques for coping with stress.
 
Bee

BlessedBe
Regular Member


Date Joined Dec 2007
Total Posts : 24
   Posted 12/31/2007 10:27 AM (GMT -7)   
Hi Bee,

Thanks for the info. I wouldn't mind if the lupus was confined only to the skin! However, I have systemic and am continuously (for the past 6 months) flaring. I have been anti steroids for years since I first took them when I was diagnosed at 14. Now that the Arthritis, swollen glands, heart palpations etc are getting unbearable I'm trying to reconsider my stand on them. The plaquenil hasn't done a thing, but I've only been on it for just over a week. I see my rheumy this week and we'll probably add some to it. Maybe I'll try quinacrine and see if that helps with the inflamation etc. Cytoxan is a thought due to my having my spleen, gallbladder, tonsils/adnoids, etc out. They're concerned about my heart and lungs d/t possible pluerissy etc.

Again, thanks for the input!
Wife, Mother, Nurse
SLE with all the additives, sjorgens, raynauds, RA etc.
Plaquenil, Effexor, serequel for sleep.
Refusing Steroids


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 12/31/2007 11:30 AM (GMT -7)   
Greetings BlessedBe! The plaquenil will not do much for you for about six to eight months and then you will see it's full benefit. My rhuemy had me on prednisone to help me out until the plaquenil "kicked in". The only problem was that the plaq never really fully helped me. She really wants me off the pred so she has me on methotrexate, too. I still take the pred at times (prn) and this works quite well for me. I have many of the same issues as you - SLE, RA, and a bit of the raynauds and sjogrens.
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/31/2007 1:26 PM (GMT -7)   
(((((BlessedBe))))) . . . Darned!! One of the two (discoid or SLe) is bad enough . . . but to be cursed with both?? So sorry. And I know how little help there is on the web for the discoid people . . . yet it is so disfiguring. I bet your post here will draw some other discoids here. Google picks up the titles of our topics and we see new people depending on those new titles.

Sending you another cup of hot tea (or should it be iced-tea to go with your sunscreen???? scool

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


susie h
New Member


Date Joined Nov 2007
Total Posts : 14
   Posted 12/31/2007 7:59 PM (GMT -7)   
I was having severe discoid rashes prior to my diagnosis. They started with small patches of what looked like poision ivy on my arm ( left only) then they crept to the left side of my face. The big ones came later, I got big red/purple spots on my cheeks. The last one I had was 4inches in diameter and was raised w/ a flat white center. My PCP thought I had ringworm!

The dermatologist dx'ed me...told me little more than to use sunscreen and stay out of the sun as much as possible. He did prescribe me a corticosteroid cream to use on my face during the flares. Within 6 weeks of using the cream, which ahs no side effects, and staying out of the sun my rashes went away.

Later I started on Medrol, it is a steroid but has fewer side effects than prednisone. I am sure that this has helped with the rashes, but it has been amazing for the stiff joints and overall pain. I did gain some weight, and get a bit of the "moonface" in the first couple of months of use, but that has all leveled back out now. I have been on the Medrol for almost 2 years and my weight is back to within 5 pounds of when I started.
 Diagnosed w/ SLE March 2005, Fibromyalgia 2005, RA 2005, Degenerative Cartlidge Disease 2006
Current Meds: Methylprednisolone 4mg/ Plaquenil 200mg/ Simivstatin


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/31/2007 9:52 PM (GMT -7)   
Hi Susie . . . . yup it sounds like driving is giving you those left-sided rashes. I have to wear a big man shirt and I slip my thumbs through the buttoned wrist to make a mitt over my hand, but leaves my fingers exposed to grip the steering wheel. Helps a lot for the driving. If you wear the shirt backward (I know, I'm a freak), it really covers the neck well too. My summer uniform.

BTW: There ARE side affects with topical cortizone. Your body absorbs it and it can really damage facial skin if used more than sparingly. . . . a child could even be poisoned by the amount of cortizone absorbed so be judicious about how it used.

Glad to hear the Medrol was such help. I didn't realize it is used for maintenance purposes. I'm wondering why the doc doesn't up your Plaq if you are needing the maintenance pred . . . it would be seemingly safer.

Thanks for sharing . . . it is SO helpful to see how each member manages their issues. Gives some good ideas!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/31/2007 9:57 PM (GMT -7)   
Hi Blessed,
 
Oh crap.  You can't win.... Well, I have similar issues as you and Audrey. I just don't have the RA. Not yet anyway. I'm getting my RF tested in the next 10 days.  I'm having arthritic "issues" out the ying-yang.....
 
So, I'm on both pred and the 10% cortisone cream.  I use the cream for my sacroiliitis (lower back inflammation).  But my doctor said any time I have an eczema outbreak or skin involvement, I can use it for that too.  The cream is called Diclofenac.  The others are right.  Pred isn't used as a continual treatment for discoid..... Yes, the cream can be "skin thinning", but what can you do?  I'm at a loss as to what to suggest now.  I can understand your frustration on this!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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