Newly diagnosed MCTD

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auditor
New Member


Date Joined Mar 2011
Total Posts : 1
   Posted 3/27/2011 1:14 PM (GMT -6)   
My 23 year old daughter was diagnosed on Friday with MCTD.  She got the call from the nurse who only told her she has this disease and the medicine she would be taking.  The nurse also said they can only treat the symptoms.  They started her on Plaquenil, twice a day.
 
I have read everything I can online.  I've read your previous posts.  They are helpful.
 
Could you tell me what we can expect?  Does the disease progress quickly? Is it USUALLY treatable?  We are all scared and would just like to talk with someone about it.  My daughter is wanting to go to nursing school, but I don't know if that is something she should pursue.  cry
 
I would appreciate any help you could give me!

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 3/27/2011 2:14 PM (GMT -6)   
Hello! Welcome. I am sorry to hear about yout daughter's diagnosis. Deep breath - one step at a time. Is your daughter seeing a rheumatologist? That is the specialist she would be referred to by her PCP. I know this sounds like a cop out, but everyone with these diseases reacts differently as far as symptoms, medication requirements, disease progression, etc. It is difficult if not impossible to get answers in absolutes. I would want a sit down with the doctor and be prepared with a list of questions. And, frankly, I would not be pleased to get a call of that importance from a nurse with no further information. Now, if the instructions were to go ahead and start the medication until she can see the doctor in a few days, that might make sense. But a good relationship with the rheumy is important and best established as quickly as possible.
Before making any major decisions, your daughter might want to see how the meds affect her and how she is feeling.
Hope some of this helps. Good Luck to you and your daughter!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 3/28/2011 3:18 PM (GMT -6)   
Auditor,
 
So sorry your daughter has mctd.  Like all auto immune diseases presentation, progression and response to treatment can vary widely from one patient to another.  No one, not even your doctor can tell you how her case will progress or respond to treatment.  Plaquinel is a relatively mild drug given to mctd and lupus patients with mild cases to see if it can control the immune system.  It might have some impact immediately but usually takes many months to reach its' full impact if it works at all.  More typcially, prednisone is given as the first drug and then a prednisone sparing drug started and pred tapered slowly due to it potential side effects from long term use.
 
MCTD cannot be cured and by definition can exhibit symptoms of lupus SLE, scleroderma and polymyositis.  A given case can have symptoms from any or none of the 3 and to widely varying degrees.  I was diagnosed with first lupus then mctd 6 years ago and had an extreme case with severe symptoms from lupus and later PM.  Some cases of mctd might also include other auto immune diseases.  It is a complex and highly variable disease that can be almost unnoticeable or very severe.
 
The good news is that most cases are treatable but some cases are more severe and resistant than others.  As a result some patients can go through a process of trial and error to find the right med or meds to control the immune system and that can be frustrating.  Normally rheumatologists treat this type of AI disease but most are not experienced.  If you are seeing an internist or GP I would suggest going to a rheumatologist in a large teaching hospital. If you look for doctors experienced treating lupus you will have more success.
 
My case was extreme but my docs were able to "tranquilize" my immune system and stop the attack on my body.  Despite the severity of my case I have not had a flare since the initial one.  Most patients have ups and downs with periods of no symptoms and then flares.
 
By the way, there is a nurse in my lupus support group who got mctd while in nursing school and was able to finish.  There are 3 others with lupus who are also nurses although 2 of them had to stop working to get their problems under control.  MCTD or lupus alone can have cognitive effects and make school difficult to complete.
 
Here are the sites that have very good basic info on mctd but none will help you to predict your daughters.
 
 
 
 
 
I wish I could give you more definitive answers but that is impossible.  It is important to treat the disease aggressively in the early stages and if she experiences symptoms of PM physical therapy is important to maintain and restrengthen muscles.
 
Bill
 
 
 
 
 
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