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 ?
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.
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.
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...
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..
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.
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!
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.
Do you live here in New York ? I live in the Bronx. Only asking because maybe we can meet up and discuss and share information.
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!
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.
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...
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...
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!
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!
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 ...
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!
Hi Cheryl,
Yes, they are weird tests; but I guess we have to do what we have to do ! I will definitely take it on a full stomach. I take it 2 x a day.
Good Day.....
Hi Tanya,
I have had discoid lupus for 7 yeas now diagnosed in 2007. I have been on several medicines, plaquenil, mepacrine, protopil ointment (pretty weak,) steroid cream (very active but burns the skin smooth ( a thin application is needed) am only using steroid creams now but it seems not to stop new ones from showing up. It just burns and flattens the sore where you apply it to. Plaquenil, i was allergic to it in terms of acne. i had very strange rough face so i stopped it. mepacrine create slight jaundice (yellow eyes). I have started to notice sores on my scalp newly. The idea is to eat well and do lots of excercises. ad that slows down the disease. but flares often come right and its about targetting and tackling it. i would say the oral drugs should be limited to short times as they have huge side effects. for instance some of them may affect the blood cells count so one of the reasons to go for regular tests when you are using plaquenil.
please share your thoughts , lets keep this thread going. i have sores on my scalp now and from today i will apply steroid on the lesions to target control it. I also have mouth ulcers that come and go. finger sores as well. Keep fingers warm and mouth warm as well like brushing with mild toothpaste and warm water rinse. wearing gloves in cold season really helped.
I was diagnosed with discoid lupus 12 years ago.at that time I had Discoid lesions on my face, chest, and back. I had been using several different strengths of steroid creams and plaquenil since diagnosis. This regime kept my lupus under control except for occasional flare-ups that happened mainly during summer months. Steroid injections would help at these times. over the years my Plaquenil has been increased from 200 milligrams to 400 milligrams, although 400 milligrams is toxic for my weight of a hundred and ten pounds due to increasing amounts of discoid lesions and addition of malar rashes that are now taking over my entire face, are inside my ears and nose and scalp. During the last year the steroids nor plaquenil are controlling my lupus. Therefore my dermatologist just started me on methotrexate, MTX, which is a chemotherapy medication.
After 12 years of taking plaquenil, I have no damage to my eyes. And I really never noticed any side effects from Plaquenil however I always took it at bedtime.