Mixed Connective Tissue Disease/Discoid Lupus

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New Member

Date Joined Apr 2007
Total Posts : 5
   Posted 4/29/2007 3:01 PM (GMT -6)   
I'm a doctor, age mid 50's who has recently been dx'd with first DL, then MCTD as my 1U RNP was slightly positive. MCTD can become SLE or evlolves into it. I've been having my DL lesions injected--top of my scalp at the back--with steriods, trimacinalone. This seems to be controlling the lesions, avoiding hair loss, but they just seem to move to the margins of the sunken in area--the steriod causes atrophy of the scalp skin. I'm on Plaquinil which has done nothing that I can tell. The next step is steroids, which I am reluctant to use as I am very physically active--have a windsurfing vacation coming up. The only joint disease I have is the base of my thumb--the CMC loint, which allows my thumb grip and oppose--both hands. Am considering having a CMC pyrocarbon joint replacement in August--after the vacation. Don't know if this arthritis is overuse--it is common in women my age and God knows I have abused my hands in my life--or MCTD/DL/SLE related.

Any comments or suggestions would be welcome. I may be a doctor--but rheum and derm are NOT my specialty and I am very unused to being a patient.


Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 4/29/2007 3:54 PM (GMT -6)   

Hi Murkywater, welcome to the group. I'm sorry you are going through this. I know what you mean about being very active. This disease really takes a lot of joy out of life. You have to really balance what you can and can't do. I started with having some problems with my thumb joints hurting. My rheumy was reluctant one day to giving me shots for some shoulder stiffness. That was a thurday. By tuesday I couldn't lift my arms to take off my t shirt. He said I could come in and get the shots. (it's a 4 hour drive) There was no way. So I increased my prednisone by 10 mg. and within about 12 hours I was much better. I hate steroids as far as hunger and mood swings but a lot of that goes away after a while. As for the plaquenil I have been on it for about 5 months. Like you I'm not sure how much it is doing. However many people here have told me it could take 6 months or more to feel the benefits. I havn't had any problems with my skin (knock wood) so far any way. But it seems like Lupus is like oklahoma If you don't like the weather give it 5 min.

I know I'm not being any help but I mostly just wanted to welcome you. Hopefully someone will come along soon that has the same symptoms and can be of assistance.

Again welcome to the group



God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Post Edited (okie) : 4/29/2007 2:58:12 PM (GMT-6)

Veteran Member

Date Joined Apr 2006
Total Posts : 1296
   Posted 4/29/2007 3:58 PM (GMT -6)   
Just tried to answer your post and the server lost it so I will try again.
Sorry you have joined this exclusive club.  If lupus is the disease with a 1000 faces then mctd (sle, scleroderma and polymyositis) is the one with 10000.  And few doctors, even rheumys have much experience with it.
I have mctd and had a very extreme case.  It started slowly but within 5 months PM hit me like a freight train even though I had been taking 60mg of prednisone for 2 months.  I lost 40 lbs of muscle mass in a week and was left a quadriplegic who could not swallow.  It hit my kidneys (proteinuria), joints, muscles, entire GI tract, and had auto immune induced hepatitis.  Almost did not make it and a 5 day, massive iv treatment of gamma globulin saved me.  My doctors put me on 150mg of imuran at that time.
Spent 3 months in hospitals and had a remarkable recovery.  I had PT, OT and speech therapy for 3 months and have continued to work out on my own for the past 13 months.  Although not back to normal I am fully functional and starting to do some of the things I did before.  I am 64 but was as fit as a young athlete and skied, hiked/climbed, and played golf in the 70s.  I played golf last weekend for the first time in 2 years and intend to ski next winter.
Early diagnosis and effective treatment is important to control this rare and weird disease.  I had 3 rheumys consulting as well as a team of specialists when things were at the worst.  Still see 2 rheumys and several of the specialists.  One of them is a respected clinical researcher at Northwestern U and has been very helpful in setting the right course of treatment.  He feels that my mctd might have "burned itself out" but is not willing to test that by stopping my meds.  I am down to only 8mg of pred and still on 150 mg of imuran. 
If you have questions feel free to email me.  There are also 2 forums that are dedicated to myositis diseases and there are other mctd patients on them.  www.myositis.0rg and www.myositissupportgroup.org.
Have fun on your windsurfing vacation but overstressing yourself physically or emotionally is not prudent.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
Meds: prednisone (9mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller

Regular Member

Date Joined Jan 2007
Total Posts : 279
   Posted 4/29/2007 6:10 PM (GMT -6)   
Hi Murky,

Be welcome. Sorry you are having this happen to you. I was diagnosed with MCTD less than a year ago. I had a hard time starting to take meds as I have always been "healthy" and med free. I resisted for awhile but pain and fatigue wore me down. I love my Imuran and my prednisone as they enable me to keep active and keep my job (as a college professor).

Keep reading up on the disease. As a doctor, you know how to educate yourself. I'm happy to tell you my story (write me at direct if you like) but my story won't be yours until somebody figures out what it is that causes autoimmune problems.

Good luck,
Stay Strong,
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Prozac (off now)

Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 4/29/2007 6:20 PM (GMT -6)   
HI Murky
Welcome to the forum. Sorry that you are diagnosed with Discoid lupus. Before I took Prednisole, not only my fingers would not move, but also my wrists and elbows. I felt like I was a handicapped and could not function normally. After taking Prednisole, I felt like my life was back. I am on 10 mg Prednisole and 2500 mg cellcept, moving towards 3000. I used to take Plaquneil, but due to the toxicity to my eyes, I could not take it anymore. It takes a while for Plaquneil to kick in though.
I hope you find relief soon.

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 4/29/2007 8:23 PM (GMT -6)   
The diagnosis of SLE has been for most of us a frustrating process. Nothing is much worse than feeling bad every day, but the process of getting a diagnosis is a close second. My mother was lucky as she was diagnosed with SLE soon after her symptoms started when she was in her late 60's. I have had various symptoms and periods of being ill off and on for twenty years but wasn't diagnosed until three years ago when I started having a particularly bad flare. It's such a difficult disease to diagnose that it's not unusual for many if not most of us to be treated by family, friends, and doctors as though we were neurotic until we have a diagnosis. You likely won't have that problem since you are a doctor yourself. Early diagnosis and treatment is important.

I haven't noticed any positive effect from plaquenil either, but haven't missed a dose since I first started taking it four years ago because my rheumatologist tells me that my symptoms will worsen if I discontinue it. I'm on 400mg a day.

Good luck. By the way, any time I have the option, I chose to see a woman doctor over a man, mainly because women seem to be better listeners.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

New Member

Date Joined May 2007
Total Posts : 3
   Posted 5/9/2007 1:10 PM (GMT -6)   
Hi MURKY! I was just diagnosed with MCTD 3 weeks ago. I am just as confused as you are. All I know is that I am tired, in pain and the meds are doing a number to my G.I. tract. Hope you get some answers. Elyse aka keesakitty

Regular Member

Date Joined Aug 2006
Total Posts : 142
   Posted 5/9/2007 1:42 PM (GMT -6)   
Hi Murky-
Welcome to the group. You being a doc and coming to the board is just proof how strange and unpredictable these diseases are! You should have better sources than anyone for treatment and diagnosis, but it seems it does not help. You too seem to be pretty much in diagnosis limbo as most of us are. I was diagnosed as UCTD, I think just because it sounds better than "We do not know". I work as a CNA/tele tech and am trying to get through nursing school. I work with most of the docs I see but extra resources are no help for autoimmune disease.
So far as your meds I hope that the plaquenil starts to help both of us soon! I have been on it for 6 weeks, and nothing so far. I am sure you know that it takes 3-6 months to take effect. I would wait on getting your joint replacement until you have been on the plaquenil for a while. I found a great website
This site is a forum listed by each drug. Everyone talks about thier actual side effects, and responses to the drug. Its not exactly science but its nice to see what people say who are actually taking the med. I think when I looked up Plaquenil in the drug book it had some 20+ side effects, as most meds do. On the site most people only complain of GI issues, nightmares, and weight loss. I read through and one pt complained of cardiomyopathy (which could have been from SLE not the med) and only one complained of eye symptoms.
Good luck
Dx: UCTD,Raynaud's,iron deficientcy anemia,proteinuria
Rx: Multi-rec folic 500, Mobic 15 mg, Plaquenil 400mg

New Member

Date Joined Apr 2010
Total Posts : 1
   Posted 4/7/2010 10:23 AM (GMT -6)   
I was reading several posts on discoid lupus.  as I have had several bouts of it.  The first time it was all over my face, chest arm and back.  It lasted at least 6 months, probably more and left many scars one scar has lasted over 8 years and has gone almost it is on my eye lid and was horrible and hurt and made putting on make up miserable.  the other are a couple scars on my arm and the one that was biopsied.  All the while I had it I was taking prednisone, methotrexate, enbrell, and many other RA drugs over the years. Anyway.  It seems to come out or I get small bouts when I am in the sun.  And that makes it pretty rough considering with RA I love the sun to warm my bones.  I came on here looking for an recipe to help the recent chest episode I am having as I have been by the beach for a month now.  On another post a lady mentioned corn flour.  I am going to try it.  I have nothing to lose.  ps dont itch it or pick it.  It will leave a scar.  use some anti itch cream to help relieve the itching.  I take Rituxan for my RA it works wonderful I can walk again.wink
so it has been several days and oh my gosh the corn flower dried them up and they are not itching,  I put it on like powder with a blush brush.  I am so happy!

Post Edited (jeannetterp) : 4/12/2010 3:08:52 PM (GMT-6)

New Member

Date Joined Mar 2010
Total Posts : 12
   Posted 4/8/2010 10:08 PM (GMT -6)   
That's the truth, Okie! If you don't mind me asking, where in Oklahoma do you live? I'm an Okie myself.

New Member

Date Joined Sep 2010
Total Posts : 3
   Posted 9/18/2010 2:50 AM (GMT -6)   
Count me in this exclusive new to me club. :-/. Just got the MCTD diagnosis today after 30 years of rashes on my face that would start out like a bug bite and convert to a large purple disk then go away after a month or so. That was when I was in my twenties now that I'm 49 and for about 6 years the rashes are eating my scalp hair and all. I have diffuse lupus rashes on my arms that are aggrevated even with sunscreen on. Sun is a no no big time.!

Now after years of a neg ANA I am now positive. I didn't get a copy of the blood work but will ask for one next time.

I've just been given plaquenil. How long will it take to work? Any side effects?

Other than my skin symptoms I have terrible pain in my butt and legs now and it's hard to stand up sometimes. Muscle weakness and spasms.

Also, last but not least, I just lost my insurance, my hubby is disabled with diabetic neuropathy and is filing for SS benefits and since I have been a house wife for the last 16 years I have no SS credits.

What should I do,? This is scary since I have a 14 yr old son to raise.

Any help would be appreciated


Veteran Member

Date Joined Apr 2006
Total Posts : 1296
   Posted 9/18/2010 10:05 AM (GMT -6)   
You should repost this in a fresh post.  It sounds like polymyositis is affecting your muscles.  No one can tell if plaqunel will work on your case.  Since you have probably had this for a long time it might take something more industrial strength like prednisone or pred in combination with other meds like imruan or methotrexate. 
Prednisone is the fastest acting treatment and most of the others take months to become fully effective, if they work. 
Sorry you have joined the club and hope you can find a way to get through all of this.

New Member

Date Joined Sep 2010
Total Posts : 3
   Posted 9/19/2010 11:00 AM (GMT -6)   
Thnaks for the reply, I have diabetes so I don't know if they will give me prednizone or not. I'll ask next time.

What do folks with no INS do?

Veteran Member

Date Joined Apr 2006
Total Posts : 1296
   Posted 9/19/2010 11:20 AM (GMT -6)   
Medicaid or some other form of state or local aid.  There are now over 50 mil Americans without health insurance due to the economy.  It will be years before the new healthcare bill kicks in to cover some of those without insurance.
For medication there are sites to help you get discounted or free meds.
There are others and some drug companies offer help directly.  If the meds are generic the best thing are the cheap prices at Walmart or Target, etc.  My wife has to take a drug that is almost $500 per month and we are seeking help from the drug company when she is in the doughnut hole.  Crazy stuff. 

New Member

Date Joined Sep 2010
Total Posts : 3
   Posted 9/19/2010 2:24 PM (GMT -6)   
Thank you bill. I was trying to type a letter to you and I hit a button and it disappeared. I'll try again later as my nerves are fried.

Yes, I know all to well about INS. My hubby was employed for 17 years and had excellent INS, now he is filing for SS and the company paid 80 percent of our COBRA premium otherwise we could not have afforded, but now it's gone and we are suffering.

I hate to admit I might file for divorce and move to Washington state for help there as Texas is so hot and we are going broke just trying to keep the house cool. I think we might be in better shape if I do this.

Extreme isn't it?

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