New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Oct 2015
Total Posts : 1
   Posted 10/30/2015 8:47 PM (GMT -6)   
Im a 59 year old woman recently diagnosed with Lupus (3 months)
Was sent to a rheumatologist for help with a skin disease (Hailey Hailey)Have had this disease over 30 years.
Flares of blisters on upper body in damp areas. Have not responded to normal treatment for skin disease.
Been to over 20 dermatologists and various other drs over the years. Have been on 20 mg prednisone for over 5 years for maintenance of skin disease. Have flareups and have to take 60-40-20 regimine of prednisone for 5 days each.
When diagnosed with Lupus they explained that was probably why not responding to normal treatment.
Has taken 3 month for blood work and other tests to determine what kind of medicine to take.
Took plaquenil for 2 weeks and was very sick and stopped.
Just started Imuran this week 12 mg.( not sure that is enough to even help) Not really satisfied with the information from my doctor.
Just wanted to get your opinion of the treatment so far. Very frustrated: osteoarthritis, painful joints,hands hurt,migraine headaches,fatigue, swelling in feet.
have not caught a bad cold after starting the Imuran.
My skin condition has flared up again but not sure I should take the regimine of 60-40-20 prednisone.
Sorry so long.

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 10/30/2015 9:04 PM (GMT -6)   
Plaquenil sometimes takes 2-3 weeks before your stomach calms down - if you are taking it with food, switch to without food. Or if you are taking it without food, switch to with food. Of course, if you are having issues other than digestive ones talk with your Dr. Plaquenil has to build up in your system and often takes 2-3 months before you can see any beneficial effects.

Prednisone is often used to treat Lupus flares as well as other things like the skin disease you've mentioned. If you normally take it like that for skin flares, and it works, you are safe going ahead and taking it. (However, we are not Drs and you should check with your Dr if you have any concerns at all.)

Imuran is often used to treat Lupus flares. I believe my dosage was about 150 mg daily. Sometimes Drs start with lower dosages to make sure we can tolerate a medication before going up to a regular dose. Maybe that is what your Dr is doing.

Is your rheumatologist treating you for both illnesses? Make a list of your questions, and give the Dr a written list (also carry a copy for yourself) and make sure to go over each question at the appointment. If you don't find that satisfactory you certainly have every right to find a second opinion.

When is your next appointment?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Veteran Member

Date Joined Aug 2014
Total Posts : 1528
   Posted 11/6/2015 1:11 AM (GMT -6)   
Prednisone and planequinil are both effective and common drugs used for lupus.

I try to stay away from both as have lots of side effects .

But skin problems and flares take a big chunk of symptoms.

It takes weeks for me to recuperate,my eyes got affected by planequinil and improved as I stopped meds.
But ultimately have to take it for 3 months as my rheumy wants me to,unless I find a good substitute.
Be cautious and observe.

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 11/8/2015 5:45 PM (GMT -6)   
12 mg is a sub therapeutic dose of Imuran. Could your doctor just be testing to see if you can tolerate it...although I have not heard of that approach. Some patients cannot tolerate it and know almost immediately and stop. I took 150mg daily for several years before tapering to 100 then 50 then 0. It takes 6 months or more for it to be fully effective....if it works.

MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 25, 2018 6:17 AM (GMT -6)
There are a total of 3,006,361 posts in 329,331 threads.
View Active Threads

Who's Online
This forum has 161829 registered members. Please welcome our newest member, mrretired18.
227 Guest(s), 4 Registered Member(s) are currently online.  Details
tickbite666, Skypilot56, Jay79, Old Mike