It's been along time, but I have an important question for those with MCTD

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Regular Member

Date Joined Jan 2008
Total Posts : 40
   Posted 11/23/2009 7:32 AM (GMT -6)   
If you had read from my previous posts, I have been determned to heal, and up to this week it has been a ride, but I would always have quick recovery.
My problem started in summer. I purchased a prepackaged Diet program beause I had gained weight and the Rheumy though this was causing problems with my feet and legs.
This food in fact made me sicker, only to find out it is fortified with wheat, and already having a barrets esophogas, I started to suspect gluen sensitivity.
Around this same time I was on a Prednisone taper and methotrexate. My liver showed inflammation so my Rheumy took me off methotrexate and left me at 3mg prednison and put me back on Chloroquine 250mg daily. (Previously, I was on 500mg. 4 days aweek). and sent me on my way saying that my leg and feet problems were fibromyalgia. Well for over a week my condition has deteriorated. I can't walk properly and am shuffling. My knees are swollen and the cartilidge hurts when bending. I feel like there is a cord running from the back of my kneed down to my ankles and will not stretch. I cannot put weight on my feet for any period of time and the aching from my knees down to feet has progressively been getting worse.
I finally reached the Rheumy on Friday who told me to raise my Prednisone to 10mg daily for a week and we will take it from there. all I am getting from this is tolerable points through the day, but nights are unbearable. Today is Monday and I have been up since 3 am squirming because i the pain in killing me and i have a fever of 100. I an supposed to go for pulmonary functioning tests today and eko on Wednesday.
I can't tolerate going and sitting awhere.
Would any of you go right to emergency, so that the appropriate people can find out what is happening rather than me waiting for a call.
Your opinions are appreciated.


MCTD Nov 07 chloroquin 250 mg;prednisone 10mg;wellbutrin300mg;ativan6mg;imovane 10mg daily hrts

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 11/23/2009 11:54 AM (GMT -6)   
Hi Freename, I'm sorry you are in so much pain. If you believe you are in distress I would
certainly say go to the ER. Give your rheumy a call and explain what is going on.

I have MCTD along with Fibromyalgia. If you are flaring from fibro, prednisone will not
help you. I have only done a prednisone taper once but I have read that prednisone does
not help fibro pain. Fibromyalgia pain can be excruciating. I take Savella and Flexeril for
my fibro and Methotrexate for MCTD. In the past I was on Plaquenil and Imuran for

Heat is a fibromites friend, soaking in a hot bath helps. I use heating pads and I have a
****su massage chair pad that feels good. It is important to get exercise. If you don't
move your muscles become more stiff and achy resulting with more pain.

Hope your rheumy can help you get some relief!
Has your rheumy done a tender point exam? Typically fibro pain is widespread and there
are 18 places on the body that are tested for pain and tenderness.


MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

Post Edited (crazykitty) : 11/23/2009 10:10:50 AM (GMT-7)

Veteran Member

Date Joined Apr 2006
Total Posts : 1296
   Posted 11/23/2009 10:42 PM (GMT -6)   
MCTD includes lupus which can attack your joints which it did to me...all of them with incredible swelling and pain.  Can't give you any advice about fibro as I have never had it.
If you have barretts which I also have I would doubt that gluten has anything to do with it.  Barretts is caused by acid reflux and is often associated with mctd and/or myositis diseases.  The round muscles at the top of your stomach are weakened causing the acid reflux.  If you have barretts then you know that is a precancerous condition and you should be taking a PPI to reduce the acid and get an annual endoscopy exam.
I don't think that typical ER docs are going to be able to help you.  find another rheumy.  10mg of pred is a low maintenance dose, not what you would prescribe to someone with an active disease.  I was on 60 mg pred and my case was resistant. It took a massive 5 day treatment of ivig to save my life.
Most cases are not as extreme as mine was but mctd is very complicated and can be difficult to treat just like lupus alone.  It is lupus plus 2 other diseases plus whatever else you might have.
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
Remain optimistic and you can overcome the odds.

Regular Member

Date Joined Jan 2008
Total Posts : 40
   Posted 11/24/2009 11:35 AM (GMT -6)   
Thanks Both for you answers
As it turned out my Rheumy saw me yesterday and saw that I had fluid on my knees and right ankle. He removed fluid from one knee and gave me injections of cortosone in both knees. At that time he said he now knows what he is dealing with ??????- I was like WHAT?? I keep coming to him and he keeps asking me about my fibromyalgia and depression. I have repeatedly told him I never had these issues with Fibro, but of course I was sent off with minimum of anything. Yesterday he kept me on 10mg Prednisone, for 2 weeks then taper; 250mg chloroquine every day; 8-2.5 mg methotrexate once a week; 5mg for 6 days a week- plus my other meds.

Yes I left feeling like this man isn't paying attention. The problem I have is trying to find a Rheumy that really studies what I have. Does anyone know of any such Drs in Ontario Canada?- I will gladly travel


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