[hopelessobx]

Hi,
I found this site while trying find help for my discoid lupus. I was diagnosed 15 years ago. My face and ears are covered with active lesions and scars. I am allergic to many of the medications that I have tried. Most recently I have been taking Dapsone (5 years). It kept me a little under control but NEVER clear. Now I can no longer take it because it was causing problems with hemoglobin carrying oxygen to tissues. I can't tell you how many specialist I have seen and end up with no solutions. As of this week my dermatologist decided he should step back and let the rheumatologist take over my case. Very nice! The rheumatologist doesn't feel that she can treat me because I have DISCOID lupus. Third time in 15 years this has happened. Now I have no medication and no doctor that wants to treat me.
As my "name" indicates I am HOPELESS! Anyone have any ideas on how to find a doctor that isn't afraid of difficult cases and will stay with me until we find something to help my condition? I live on The Outer Banks of NC which is at about 2 hours from the nearest "CITY"
I am seriously thinking about acupuncture, but don't know much about it or if anyone has ever had success with it for treating discoid lupus.
I am open to just about anything at this point.

 

[Maia]

Welcome to the site! I have minimal skin issues with my lupus (malar rash and sun sensitive rash will develop on my arms & neck) so I can't help you too much on those areas. You may want to mention what medications you have been on/had a problem with for others that may come along with their personal experiences so they don't suggest something you've already tried.

It must be extremely frustrating to not have a doctor willing to treat you... you may have to travel a ways to a university teaching center. If you post in the find a doctor section (or search through there) someone might be able to give you a name for a good doctor in the area.

Here is a very thorough link that lists many different medications used in Discoid lupus. Maybe there is something there that hasn't been tried yet for you and you can run it by the dermatologist that is out of suggestions?

http://www.emedicine.com/DERM/topic247.htm

Good luck and welcome. You'll find a lot of information, empathy and support here. We can also have a few laughs, and you can make friends here as well. Take care...

 

[karen.w.]

Hi

welcome to the forum

I'm sorry I can't give you any advice I just wanted to welome you here & wish you luck finding a better doctor!

my rash affects my face & neck & can be quite bothersome but I'm lucky my skin responds well to steroid cream..I'm sorry you are having a bad time with yours :sad:

I hope you can learn more from the link maia has posted & from other members too

take care..karen x

 

[hopelessobx]

Thanks

Thank you for responding. You have a very good point about listing the medications I have taken in the past. These are the ones that I can remember off the top of my head.
Prenisone - caused SEVERE depression. (suicidal thoughts)
Quinacrine - I was a lovely shape of yellow and after about a year or two the doctors decided to stop because I was not receiving any benefits from it.
Plaquenil - extreme itching! I tried to continue taking it anyway because I believed it would help. After waking up in the mornings covered in blood from scratching myself in my sleep, I finally told the doctor and was immediately taken off this medicine.
Dapsone - I have already explained.
There was another one that I had to sign a form at the doctors office and at the pharmacy, staing that I would use two forms of birth control because of the risk of severe birth defects. It had been banned in the US for years because of that side effect, but was allowed back on the market for limited conditions. Wish I could remember the name. Anyway, I did not respond to it so I they stopped that one.
I have had many topical cortisone creams that they change and limit because of thinning of the skin after extended use.
When I am "flaring" I get a shot of Kenalog/Celestone. It is amazing how quickly I become under control with this, but they limit how often this can be administered.

I did go to UNC (The University of North Carolina) for a few years. That was the second time the Derm. said I needed to be in Rheum. and Rheum. said I needed to be in Derm. After about 4 trips. I stopped going. The "clinics" were a different days so I would drive 4 1/2 hours for an afternoon appointment with one, spend the night in a motel, go to second appointment the next morning, then drive home. I would leave there thinking OK, I don't know anything more now than I did before and they both think the other one should treat me. Needless to say this got really old! FAST!

 

[Maia]

Very frustrating indeed. I have been on the doctor merry go round and you really just want to jump off after a bit!

Imuran can be used as a treatment, and some will even take Cellcept if nothing else has worked. You may want to review the meds on that link & ask your last treating doctor about trying that medication. It sounds like you have tried the usual meds already but there are others out there!

Take care and good luck.

 

[Clare.T]

Welcome to the forum !

I'm sorry for the skin problems and the difficulty getting treatment.
I should think the medicine you are referring to was Thalidomide.

The same medicines are used to treat skin lupus as systemic lupus with the addition of Thalidomide, dapsone and on occasion the retinoids.
You haven't mentioned Imuran or Methotrexate or Cellcept. There's also oral gold, clofazimine and cyclosporine although they seem rarely used and I haven't heard from anybody that they have helped. Although of course my 'clinical' experience is limited to this forum and we don't always hear what happened !:hehe:

You might find the topical creams Elidel or Procrit helpful in place of the steroid creams. You do have to be even more careful about sun avoidance with these as with the immunosuppressants. And the accutane type come to think of it.
I myself would go for the Cellcept. I was interested to be offered it by my lupus specialist since patients taking it for SLE have found incidentally that it helps with their skin too. I only declined because I am more or less OK with my current meds and at this stage of my life don't feel like trying anything.

All the best

Clare

 

[marymackay]

Discoid answers?

Dear Hopelessobx
sorry to hear you are getting the runaround with treatment for your discoid. They were great solutions from other posts, especially for that site from Maia, thanks- as it is the most comprehensive I have see, much info there.
I live in a city with no specialists, visiting or otherwise. No GPs suggested scalp tests, just gave me tablets, creams, frozen treatment(never again). So eventually after over 2 years of ohh I went down south early last year to dermatologist, who suggested plaquenil, but no test as with infected sinuses had been on sulpha, an antimalarial, and had eased slightly.
Too difficult to get back there, so later last year Sep flew down to rheumy, in short appt, no time to do physical, said lupuslike symptoms, onto plaquenil for other symptoms, no change yet. See him next month. General specialist here said- discoid? need to see skin specialist.
So end Nov contacted dermatologist from Net, given an appointment Jan 16, flew down, but she said need to go through hospital in that city, offered me lots of creams etc, which I declined, said I'd had all. needing further treatment for basal skin cancer too.
So still waiting for d/x treatment, wait and see.So I know you will continue to strive for the same, so all the best:wink2: