Discoid

[MSGT]

Is there anyone on this sight with SLE with Discoid Lesion? I am a male and I contacted Drug induced Lupus 2 years ago due to my seizures and a change from my medication Tegretol which I took for 15 years. When they changed the tegretol they first experimented with Lamictal, zonagram, keppra, then Gabpentin. Finally they decided I was allerigic to all and started me on Trileptal. One of the first experimental drugs gave me the Lupus. It has since turned into SLE with Discoid Lesion. The ointments did not work so I began prednisone, with plaquenil. All I would like to know if anyone knows how long it take prednisone to work to help control the rashes, and if prednisone is lowered to 5mg per day will I still have the bad side effects? Any assistance would help. thanks.

[Tom]

HI MSGT, :wavey:

You're in luck today! :p I have SLE with a few different rashes and discoid is one of them. Since it took me 12 years to get diagnosed with Lupus, and not being treated for that long I have bad scars from it. It was actually the first physical sign of Lupus for me. After getting my dx and started on Plaquenil, the scabs started to heal within a month or so. It takes Plaq. 3 months to get to full strength in your system. I was also put on 10mg of pred. which was to kick start start the healing process. I only took the pred. for about 2 or 3 months.

Plaquenil really made all the difference for me. I hope it works as well for you. Take care. :hello:

[MSGT]

I have been on plaquenil for 3 years, and started prednisone 8 July, but still lots of rash and it too is scaring. I do not know how long this take to start to settle down, but hopefully soon. Yours sounds like your doing much better, how so but thanks for answering, any further Ideas I can talk to doctor about or medications.

[Clare.T]

Hi there - ask your doctor about adding 100mgs Quinacrine to the 400 mgs Plaquenil. It can work wonders.

Let me know if it helps you :)
Cheers
Clare

[Tom]

Cortisone creams or injections are common treatments for discoid rashes. Honestly every cream I tried seem to cause infections for me. One was really bad and left a deep scar on my face. It doesn't seem to matter for me if iI get a bug bite, cat scratch, or paper cut, I can usually count on it getting infected unless I use antibacterial creams and bandaids. My skin is very sensitive.

We are all of different chemistry makeups and meds don't always work the same on everyone. The Plaq. did the trick for me. It works best on skin and joints for us lupies, so it's probably doing more than you know.

Pred. is the most common med given for flares which is why your doctor has you on it most likely. If it's not helping at all, you need to tell them so you can try something else. My skin seems to really like aloe. I'm using using aloe gel right now, has more aloe in it. :)

I hope you get some relief soon, I remember how it felt....12 years worth.
Good luck!

[MSGT]

Thanks for reply Tom and Clare

I have just call Dr for appointment for review. I will bring the suggestions up.
Your suggestions are greatly appreciated, its really nice to have someone to talk to about the same problems, its hard to explain to someone who has not the problem. Thanks again. The is a new drug in, I believe phase 3 I have heard about it is called Lympho-stat-B sounds promising, well we will see. Have a great day.

[Clare.T]

I don't know what the eligibility requirements are for the Phase 3 trials but if Plaq and Pred are all you have tried for SLE, and for the discoid, there are several existing tried and true options, depending on how the SLE is affecting you and how you respond.

The Plaq/Quinacrine combination is especially good for skin lupus and joints, and other meds can be added as needed for other symptoms.

Good Luck

Clare