CUTANEOUS SUBACUTE LUPUS

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Angelina09
Regular Member


Date Joined Apr 2012
Total Posts : 20
   Posted 6/29/2012 1:18 PM (GMT -6)   
Hi,
I wanted to get some feedback here.  From April 2nd to May 16th.  My face kept erupting.  approx
5-6 weeks.  then it stopped on May 16, 2012.  It was like wild fire.  It wouldn't stop and lasted that long.
My doctor last friday, finally told  me that he thought I had 'Cutaneous Subacute Lupus."  I have been reading about plaquenil.  My question is does Plaquenil help with the face erupting??  OR does it just help with Systemic Lupus - the organs?   I thought it would never stop.  My dermatologist said it will probably happen again.
 
I am not on anything right now.  My hands turn dark red and my palms and then it goes away. This happens daily from anywhere from 5 minutes to 20 minutes or so.  i asked my doctor if he ever heard of this and he said yes.  I then asked him "in what sense?"  he responded :  Cuteaneous Subacute Lupus.  Does anyone else have this and does anyone else have cutaneous lupus and does plaquenil get the "wild fire' eruptions on the face to stop or slow down???    (I didn't and don't have open sores.  everything has lightened up).
 
Any feedback is appreciated. sad

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/29/2012 1:23 PM (GMT -6)   
Plaquenil is a DMARD. It slows down the lupus and tries to supress some reactions.

I'm on plaquenil for my SLE. It helps a lot.
Joy

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 6/29/2012 1:39 PM (GMT -6)   
We've had members in the past with this, but I don't think any of them are active on the forum right now. This looks like an informative website. I would think that plaquenil would be of some help to you -- but don't know if a dermatologist would be savvy enough to prescribe it, might need a rheumotologist.

emedicine.medscape.com/article/1065657-overview

It looks like staying out of the heat and sun (including florescent and halogen lights) might benefit you.

Best of luck,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Elbee
Regular Member


Date Joined Apr 2012
Total Posts : 50
   Posted 6/29/2012 2:22 PM (GMT -6)   
I take plaquenil for my UCTD, which manifested as muscle pain and skin lesions on my torso and legs. A few months into taking plaquenil, I'm barely getting any more skin lesions. According to my rheumatologist, plaquenil is good at clearing up skin involvement. Lynnwood is right that you might need to see a rheumatologist to get plaquenil, but for me, it's been a wonder drug-- no real side-effects and great results in clearing up my skin and reducing my leg pain!

Let us know how it goes!
Hashimoto's Thyroiditis & UCTD // synthroid, hydroxychloroquine, ranitidine, naproxen, tramadol

Angelina09
Regular Member


Date Joined Apr 2012
Total Posts : 20
   Posted 7/2/2012 1:45 PM (GMT -6)   
Hi Elbee,
You mentioned that you have UCTD?  I'm not sure what that stands for.  I was diagnosed with Subacute cutaneous and have read that I can get discoid lesions from cutaneous.  I have ring shaped and oval shaped lesions that have healed but you can still see them if i remove my makeup.  I did not know that cutaneous can turn into discoid lesions.  i am already losing hair.  My only symptoms are that my hands turn dark red from the flurouscent lights at work and the sun,  I lose hair, and the 4-6 wk flare up on my face which left a quarter shape on my chin, cheeks and corner of cheeks.  However,  they were not cuts like discoid.  Light colored, flush with the skin.
 
I am dying to talk to someone who has Cutaneous lupus.  I haven't gotten any outbreaks on my body except a skin rash (very small).  the size of a large common pin head.  My knuckles, fingers, and once my complete hand turned dark red and then purple.  Is my blood flushing???

Angelina09
Regular Member


Date Joined Apr 2012
Total Posts : 20
   Posted 7/2/2012 1:47 PM (GMT -6)   
Thank you for all of you are very intelligent. much more than me. your feedback is so very appreciated.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/2/2012 5:32 PM (GMT -6)   
I think the hand change is raynauds. That's your blood vessels constricting.
Joy

Angelina09
Regular Member


Date Joined Apr 2012
Total Posts : 20
   Posted 7/2/2012 7:55 PM (GMT -6)   
Thank you Joy.

Elbee
Regular Member


Date Joined Apr 2012
Total Posts : 50
   Posted 7/3/2012 9:32 AM (GMT -6)   
Angelina09 said...
Hi Elbee,You mentioned that you have UCTD? I'm not sure what that stands for. I was diagnosed with Subacute cutaneous and have read that I can get discoid lesions from cutaneous. I have ring shaped and oval shaped lesions that have healed but you can still see them if i remove my makeup. I did not know that cutaneous can turn into discoid lesions. i am already losing hair. My only symptoms are that my hands turn dark red from the flurouscent lights at work and the sun, I lose hair, and the 4-6 wk flare up on my face which left a quarter shape on my chin, cheeks and corner of cheeks. However, they were not cuts like discoid. Light colored, flush with the skin.

I am dying to talk to someone who has Cutaneous lupus. I haven't gotten any outbreaks on my body except a skin rash (very small). the size of a large common pin head. My knuckles, fingers, and once my complete hand turned dark red and then purple. Is my blood flushing???


Hey Angelina,

UCTD stands for "undifferentiated connective tissue disease," which means I have some sort of autoimmune connective tissue disease (like, lupus, RA, polymyositis, scleroderma are all named, differentiated connective tissue diseases) but it doesn't fit the definition of any of the named diseases. My UCTD includes skin lesions that, on biopsy, look like lupus lesions. So, I don't have subacute cutaneous lupus, but I do have lupus-like skin involvement that resolved pretty well with Plaquenil.

I am sorry you're dealing with this-- skin involvement is really frustrating, I know!
Hashimoto's Thyroiditis & UCTD // synthroid, hydroxychloroquine, ranitidine, naproxen, tramadol

Angelina09
Regular Member


Date Joined Apr 2012
Total Posts : 20
   Posted 7/4/2012 7:22 AM (GMT -6)   
Thank you Elbee for the deffination. My real big concerns is whether plaquenell will resolve my lesions. I am brand new to this and have had only one 4-6 wk breakout of lesions that resembled circle and oval shapes. The shapes are lightened so I dont know if this is discoid since there is some scaring. I am so worried about discoid. I didn't even know that subacute lesions could turn into discoid lesions until I read it. Question for you. Do u take the plaquenell only during a flare up"? And also as a Preventavive ?

Elbee
Regular Member


Date Joined Apr 2012
Total Posts : 50
   Posted 7/4/2012 8:15 AM (GMT -6)   
The only way to know if Plaquenil will resolve your lesions is to give it a try. I've had great results with it, and my rheumatologist told me that Plaquenil often does very well at resolving lupus-related skin problems.

Plaquenil is what they call a "disease modifying" drug, which means you take it to calm or control the activity of your disease. So, it's a drug I take every day as a preventative. It also takes a while to take effect. I'd been taking it for over a month before I noticed a change. But, now that I take Plaquenil every day (and have been for a few months), I only have one tiny lesion on one leg, as opposed to tons of them all over my torso, legs, and arms.

So, if you start Plaquenil, you'll have to be patient because it may be 6-8 weeks before you see results. I do not have any side effects from the drug (besides some stomach upset the first week of taking it, which many people experience, but that went away). Because it has no side-effects for me and it is managing my disease so well, I am very happy to be on Plaquenil.

I think it would be worth you giving it a try!
Hashimoto's Thyroiditis & UCTD // synthroid, hydroxychloroquine, ranitidine, naproxen, tramadol

Angelina09
Regular Member


Date Joined Apr 2012
Total Posts : 20
   Posted 7/7/2012 5:34 PM (GMT -6)   
Thank you Elbee.
 
I have to tell you..  My Rhuemotologist was on vacation when I called and got his assistant.
I told her that I was going away on vacation and worried about a possible flare-up.  She
prescribed "Methylprednisolone"  4 mg.  7-day supply to be taken consecutively.  I asked
her about Plaquenill and she told me that it doesn't always work with "Subacute Cutaneous
Lopus."  I was so down after she told me that.  But the Rheumotogist was going to
prescribe me it and changed his mind when my flare was over.  I have heard it was the
wonder drug on this forum for SLE and now you which makes me feel some hope for me.
 
I just haven't bumped into anyone that has used it for Subacute Cutaneous Lopus yet.
Have you heard of:  Methylprednisolone?  I told his assistant that I was going on a long
motorcycle ride for vacation and she never mentioned some of the side effects:
dizziness. 
 
You are very knowledgeable.  I thank you so much and very happy you are doing well.
 
:-)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/7/2012 6:38 PM (GMT -6)   
I've taken Methylprednisolone many times over the years for bronchitis and lupus flares. It didn't make me dizzy. I just made me munchy. I wanted to eat carbs all the time I was on it.
It usually doses like this:
1st day-you take 8 pills metered out over the day
2nd day- 7 pills
3rd day- 6 pills
4th day- 5 pills
5th day- 4 pills
6th day- 3 pills
7th day- 2 pills
8th day- 1 pill
The pills have 4mg of medicine in them and you have to eat something with them.
Joy

Angelina09
Regular Member


Date Joined Apr 2012
Total Posts : 20
   Posted 7/7/2012 7:28 PM (GMT -6)   
Hi Joy,
 
Do you still take them.  I was told to start them the first day of the flare.
I was concerned of the side effects because there are so many side effects.
I do understand you have to eat first to avoid nausea.
 
I believe you have Systemic? I hope these help me with Ciutaneous.
 
I am scared.  I don't know when the next flare is going to be and how bad it will be.  I am losing hair and just bought Hair vitamins "Biotin" sold on amazon. It probably won't help. not sure.
 
I hope my rhematoligist takes me right away if "Methylpredinisolone" doesn't take away the lesions as their happenning.  I just don't know if this medicine will clear it up quick.  Mine were so bad Joy.  Real bad.  and I had nothing.
no medicine at the time.  Circles, oblong, shapes.  It sounds like discoid and I hope it doesn't turn into discoid.  I am happy I met you and Ebb on this site. You both are a god send.  cool

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/7/2012 7:51 PM (GMT -6)   
Every medicine has side effects, but the good always outweights the bad. For example: The plaquenil I'm on says it could damage my eyes.I just watch for warning signs and visit my doctor regular for checkups.

A short burst is not as bad as years on it. I'm scared of having to go long term on it and hope the burst packs continue to help me.

Biotin has a reputation of helping with hair loss. Mine personally has thinned over the last year. I've still got enough, but I see pink scalp in places. You can also buy it at any drug store, probably cheaper.
Joy

Angelina09
Regular Member


Date Joined Apr 2012
Total Posts : 20
   Posted 7/7/2012 8:08 PM (GMT -6)   
Hi again Joy. Yes. I read you have to go for eye exams to use plaquenil. My doctor scheduled one for me in September. I also read that it wasn't good to stay on plaquenil for long term treatment. My therapist has SLE and her near sightedness got worse on plaquenil so she got off of it.
That doesn't mean everyone. I am so against drugs, that is why I get nervous knowing I will probably be on some of these. Is it unusual that one takes more than one at the same time?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/7/2012 9:16 PM (GMT -6)   
Not unusual at all....
I'm on two types of pain meds and plaquenil.
I've seen others talk here who take more than one kind.

I hate drugs myself, but I know if I don't take them there's no telling what kind of fix I'd be in.
I have many health problems besides lupus...high cholesteral, glaucoma, asthma, degerative disk and facet disease, Vitamin D defincity, Raynauds, and PTSD.
Joy

Elbee
Regular Member


Date Joined Apr 2012
Total Posts : 50
   Posted 7/8/2012 9:03 AM (GMT -6)   
Hey, Angelina, I'm happy you're going to try Plaquenil. I hope you have success with it!

Regarding methylprednisolone (aka "Medrol"), I did not get dizziness when I took it, but definitely see how it affects you before you get on a motorcycle!

And it is definitely not unusual to take a number of drugs (though, I will admit, I find it very frustrating). Also, you may end up trying a bunch of different combinations before you find out what is right for you. Some drugs may be more short-term (like methylprednisolone or other steroids to get acute inflammation under control) and some more long-term (like Plaquenil to "quiet" the disease over the long run).

For example, I take at least five different types of medication each day (sometimes it is more if I have to add in a painkiller), but it becomes routine. And I would much rather take the pills than let my misguided body run amok.

Keep us posted on how the methylprednisolone and Plaquenil work for you. Here's hoping you have great results!
Hashimoto's Thyroiditis & UCTD // synthroid, hydroxychloroquine, ranitidine, naproxen, tramadol

Angelsway
Regular Member


Date Joined Jul 2012
Total Posts : 54
   Posted 7/8/2012 1:23 PM (GMT -6)   
I am a firm believer in doing it through vitamins and supplements as long as you can. Sometimes it is not enough, but they do help keep your organs healthy and less effected if you do have an outbreak. I take four fish oil and four 1300 Mega Evening in primrose. There is an excellent mix made by puritan's pride that has fish oil, borage oil (equivalent to evening in primrose) and flax oil. These help raise your GLA and put your ANA back into balance. Stay away from high fat food and alfalfa spouts. You need a rheumatologist and a dermatologist to monitor and keep you on track. I have my moments, but as a whole I do very well. I hope that this helps others as much as it has helped me.

Angelina09
Regular Member


Date Joined Apr 2012
Total Posts : 20
   Posted 7/8/2012 7:29 PM (GMT -6)   
Thanks Elbee!

Danni_172
New Member


Date Joined Aug 2013
Total Posts : 1
   Posted 8/13/2013 7:00 AM (GMT -6)   
I've got subacute lupus too and like you I had a
Massive eruption of sores and skin issues including
Real nasty ones on my face. My first rash on my face
Was the butterfly rash across my nose and this went
Away because a doctor at a&e prescribed me with
Steroids - once I finished the course I burst out with
Tonnes of rashes all over my body.

I was terrified but once I was sent to a dermatologist
She gave me anti malaria tablets and I've been on them
A month, my skin is so much better and the rash on my
Cheek which I've had for almost 3 months has completely
Gone no scars either ;)

My dermatologist is so pleased and feels like we have almost
Controlled it (which is a breath of fresh air for me)
I would definitely ask to try them cause they have made a
Big difference for me.

Danni

Angelina09
Regular Member


Date Joined Apr 2012
Total Posts : 20
   Posted 8/14/2013 6:12 AM (GMT -6)   
Thank you Danni!
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