Discoid Lupus

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Hello,

I was just disgnosed with Discoid Lupus. I don't know much about it, expect from what I have learned from the Internet. I was given a topical steriodal cream to use 2x a day for now. Soon I will be put on Plaquenil oral. I would like to know if there is anybody out there who has had the same diagnosis and who has been prescribed Plaquenil. Did it help ? Did you experience any side effects ? How often do you get flare-ups ?

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  • Posted

    Hi Tanya,

    I was diagnosed with Discoid Lupus just over a year ago. I am not sure if I have everything under control yet as it is a very long process for treatment. I had 2 topical steroid creams I had to use 2x a day. It does help. I only use them now for any flareups. I also have to have a steroid injection (Kenalog) to combat mine. This is the most painful because as the skin thins, the injections hurt that much more.  I am also on Plaquenil 2x a day. This medication is prescribed to control the inflammation in your body, it's not for the pain you experience. Some people can be on this for years without any problems. Before going on it, I had to have my eyes rigorously tested because there can be side effects which affect your vision so it's important to monitor your eyesight and watch out for any changes in your vision. The good news is that it is reversable once you go off the medication. You still can have joint and muscular pain with this type of lupus. I am also now suffering from headaches so will have to see if it's related to problems I am having with my eyes. My flare-ups are probably caused by daily stress so it's important to try and get lots of rest and don't overdo things. Let me know how things go with the medication. Take care.

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    • Posted

      Good Morning Cheryl,

      How are you today ? I want to thank you for your reply to my questions. I am currently using (1) steroid cream 2x a day. I will probably start the Plaquenil in about a week; I have to return to the doctor 8/5. Did you gain any weight taking the oral steroid medication ? How about hair loss (due to the Discoid Lupus) ?

      Also, did you get any blisters ? I got one a few weeks ago behind my left ear. It got really big and had fluid in it; I went to sleep one night and woke up and it had burst. I went to the doctor and he gave me oral antibiotics and also an antibiotic cream to use because it had gotten infected. Probably from me touching it; as I did not know what it was or what caused it.

      I go to the eye doctor today to check my eyes. I currently wear contacts but am in the process of getting some glasses.

      Once again, thanks for sharing and I will let you know how it goes.

      Have a Blessed Day...

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    • Posted

      Hi Tanya,

      I had weight gain when I was on the prednisone. I don't think the Plaguenil has that effect. Because my lupus is only confined to my scalp, I have had significant hair loss on the top part of my scalp. This is where I have the kenalog injections every 2 months, plus the steriod cream applied when needed. That was the hardest part to get through, needless to say depression set in and then I ate my way through it so indeed weight gain. I then lost 20 lbs and purchased a wig which has given me back some self esteem.  The most important thing is to stay out of the sun unless you are covered up completely, using lots of sunscreen and a hat. Exposure to the sun makes it worse. I now have gone from being a summer person to a winter person!

      I am not suffering from any blisters. You poor thing. Glad to hear you're getting your eyes checked before you go on the plaquenil. You need to follow up every 6 months to make sure there are no changes to your eyes. I unfortunately have to go back for a re-exam as my regular eye doctor saw something so I am hoping it's not the plaquenil causing the problem. The good news is it is reversible if there is a problem.

      Take care!

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    • Posted

      Hi Cheryl,

      I want to thank you for all the shared information; I don't feel like I am going through this alone anymore. I go back to the doctor tomorrow and will probably be given my prescription. I also have to be put on birth control (LOL) while taking the Plaquenil. I am 48 yrs old; but still get a cycle; so that is why I have to use it along with the Plaquenil.

      Also, I get these really hot sentations on the inside and it seems like it comes out and circles my body and I am in a oven. It lasts for a few and then goes away; but comes back periodically.

      Once again, I thank you and will keep in touch.

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    • Posted

      Hi Tanya,

      Glad to share with you. Believe me you are not alone going through this. I am not aware of plaquenil affecting weight gain. It's mostly to control the inflammation in your body which in turn helps your joints and organs. Make sure you have your eyes monitored every 6 months once you go on this drug to make sure you don't have any eye problems. I have an appointment next week because there may be an issue with one of my eyes. I'll let you know what they say.

      Also, because of your age, you are now perimenopause, oh joy! That could explain also your body may be experiencing hot flashes. This can last 10 years going through this wonderful stage of our lives, again oh joy!! I keep a fan beside my bed at all times to help me with this. Other things that can set this off are alcohol, coffee and spicy food. I try to limit my coffee intake to 1 cup/day. Once you're on your medication hopefully you will see some improvement.

      Would love to get together to chat except I am way over on the west coast. We can still share info as things progress.  Keep me posted and take care!

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    • Posted

      Good Morning Cheryl,

      Thanks for all the information you continue to provide. Yes, I have had my eyes checked and have to go back in October. They said they will have to check my eyes periodically. I have experienced a lil nausea this weekend; not too bad.

      Yes girl, I am perimenopausal... If this is the pre-menopause, then what do I have to look forward to with the actual menopause ? LOL I don't want to know.

      Sorry to hear that you are not on the East coast; yes, we can continue to share information.

      Thank you and take care...

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    • Posted

      Hi Tanya,

      Had a visit with my eye specialist and my eyes are fine. She didn't see anything wrong with my eyes. She did explain more about plaquenil. My dosage is 200 mg 2x a day which is a total of 400 mg. She explained that dosage goes by your weight. If you were a very thin person, you probably could only handle 200 mg/day. Also she explained that it takes about 6 years before any toxicity to build up in your eye so as long as you're having your eyes monitored, you should be good to go. It's been so long since I have been on it so not sure if I had nauseau from that or just in general. Hopefully will go well with my next visit in September and that I don't need any more injections for a while, just the ointment.

      Keep me posted on your progression.

      Cheers!

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    • Posted

      Good Morning Cheryl,

      Gladd to hear that your eye visit went well. I had another eye exam (it was part 2 of the 1st one). It was really difficult and the technician didn't make it any better. I had to look into a machine that had a yellow light; I had to focus on that yellow light while while lights appeared all over the screen in different areas, sometimes in clusters. I had to press a lil remote whenever I saw the white lights. She said I kept moving the eyeball which would not give good results. I probably will have to repeat when I go back in October. The nausea is still around but I notice if I don't eat a full meal when I take medicine, then it comes. I am also taking 200 mg of Plaquenil.

      Keep in touch ...

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    • Posted

      Hi Tanya,

      Don't worry about the eye exam. I did the same tests. My eye doctor told me I didn't do well on one of the tests but she said it was probably because it was my first time. These are such weird tests they make you do. My technician made me spit out my gum which made me feel like I was back in highschool so don't take it to heart.  Definitely take your medication on a full stomach if possible. Are you only on it 1x a day??

      Cheers!

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    • Posted

      Hi Tanya,

      It's been a while but wanted to check back and see how you were doing. Are you still suffering from the nauseau?? Hopefully that's under control. Are you on any new meds or still the same?  I had my eyes tested again in June or July but everything must have been ok as I didn't hear back from the eye doctor. I still have to go see her in December just to get a regular eye test.  I have been extremely lucky with my prognosis and have now been able to cut my meds down to 1 pill a day. Just saw both the dermatalogist and the specialist and they are very pleased with how things are going. Haven't had to have any injections for over a year now so all of my dents in my head have filled in and there has been some regrowth of hair. It's funny though, I think I have lost some of my eybrows though but that can easily be fixed. I have to go back to the specialist in March 2016 and he said if I continue with the progress, I can go completely off the plaquenil so I am very happy about that. I still have a lot of maintenance that I do on my face and hands when out in the sun. We had such a hot and long summer here this year there were days I didn't leave the house. I just keep covered up whenever I go out now as I don't want to have to go back and start all over again.  I told them both I put it down to divine intervention. Let me know how things are going.

      Take care

      Cheryl

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  • Posted

    Hi Tanya,

    I've had it for about two years now, and it sounds like they have you on the same stuff as me.  So far it has remained almost completely  to my scalp. I am on Clobetasol Propionate, and the Plaquenil.  The Plaquenil has helped with no side effects.  They do make me get my eyes tested every year, for a possible side effect that may weaken or do something to your eyes ( I probably should know exactly), but they check out fine. The worst part of this, is that it's so hard to tell when it does flare up, because you can't see on the top of your head.  I think the trick is to get that Clobetasol on the flare up spot as soon as possible, before it turns into scar tissue. So you need to really pay attention to whats going on up their. (easier said than done).   Good luck and let me know if you have any more questions.

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    • Posted

      Good Morning Jerry,

      How are you today ? Thanks for sharing with me. I currently have it on my forhead and behind my ears. They are dark spots (as I am African American). They sometimes itch; I hope that the medication they will provide will help take this away.

      How often do you have flare-ups ? Any weight gain with the plaquenil ?

      Once again, thank you and I will keep in touch.

      Have a Blessed Day..

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  • Posted

    Hi Tanya,

    It is hard for me to tell if I have flare ups, or it just shows up from time to time, because it is in my hair and so hard to see.  My scalp will feel sore from time to time and thats when I pay more attention to it and use the steroid cream.  I didn't even know weight gain was a side effect of the Plaquenil.  I did gain weight last year, but I think it was more of me just eating too much!  I have since lost the weight already.  I did get some spots on my forehead this past winter, that were kind of dry itchy spots.  They wen't away very quickly after applying  a different ointment.

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    • Posted

      Hi Jerry,

      I also have it on my scalp. I am using the same medication as you plus I also have to have steroid injections every 2 months to control the inflammation. The injection they give me is kenalog. Presently I don't have any scar tissue that has developed which is a good sign but there has been hair loss. I am now using Rogaine to see if it will stimulate some hair regrowth. I am seeing the specialist again in Sept. to get an update. Are you having any injections on your scalp?? I also have some dry patches on my skin on my face but I don't want to use the same ointment as it's too strong for the face. What kind of ointment did they tell you to use. I am seeing the dermatologist again in Sept. so I will ask him also what he recommends. It could be excema.

      Take care.

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    • Posted

      Hi Cheryl,

      They initially gave me injections in my scalp, after they figured out what I had, I believe it was some sort of cortizone. I don't think it did much good though. Once I started with the Plaquenil for about a month it slowly got better.  The cream my doctor gave me for my face is, Elidel (primecrolimus) cream 1%.  He gave me this tiny free sample tube, that I used only a couple of days and it cleared whatever it was on my face, (forehead), right up. I think it may have been excema also, but he figured he would just treat it as if it was the discoid Lupus. He told me it was pretty expensive and that I definately shouldn"t use the Clobetasol on my face, because it is too strong for the thinner skin of your face. 

      Good luck...

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    • Posted

      thanks Jerry. I'll make a note of that ointment as I go see both my doctor and dermatalogist beginning of September. I agree the clobetasol is too strong for the skin as it will thin it quite badly.

      Cheers!

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