MCTD Flare Questions

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mary ester
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/21/2009 8:10 PM (GMT -7)   
hello... Is there anyone one line to talk about mctd? I am currently in the middle of a flare up... have questions.


<Just added a Subject so people will find this!>

Post Edited By Moderator (Lynnwood) : 7/22/2009 8:58:27 AM (GMT-6)


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 7/22/2009 7:09 AM (GMT -7)   
Hi Mary Ester,

I am in diagnosis limbo but my Rheumy believes I have MCTD. I have all the symptoms
never had a positive ANA but test positive for RNP. I am currently taking Methotrexate,
and Savella.

I will answer any of your questions if I am able to. I do understand the pain.

Robin

boxergirl
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/22/2009 8:05 AM (GMT -7)   
Hi Mary Ester and Robin,

I have MCTD, if it is mixed connective tissue disease/disorder. What is Savella? I am on Methotrexate, Prednisone and just started on Plaquenil which is killing me right now. I have terrible GI side effects.

Mary Ester, what are your questions?

freename
Regular Member


Date Joined Jan 2008
Total Posts : 40
   Posted 7/22/2009 8:44 AM (GMT -7)   
Hello Everyone
 
I too have MCTD and have been on a steady course of meds since nov. 2007. Currently, Prednisone taper, methotrexate, chloroquine, folic acid and various sleeping, anxiety and depression meds.
 
If there is anything I can answer, please ask
 
Liz

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 7/22/2009 9:05 AM (GMT -7)   
Savella is a medication to treat Fibromyalgia pain. It was just OK'd by the FDA in
January. I have just started taking it a week ago. I am hoping it helps with muscle pain.

I take Methotrexate, Savella, Folic Acid, Boniva, Lisinopril, Cyclobenzaprine and
vitamin supplements.

In the past I have been on Imuran and plaquenil.

The cyclobenzaprine is a muscle relaxer and only take it as needed.

Robin

boxergirl
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/22/2009 9:08 AM (GMT -7)   
Robin,

What side effects did you experience from the plaquenil when you were on it? Did it help you at all?

Thanks,
Lisa

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 7/22/2009 9:46 AM (GMT -7)   
Lisa,

I tolerated Plaquenil well, no side affects. I was only on it for eight months. Plaquenil
takes a few months or more to build up in your system before you have any benefits.

My Rheumy took me off the med because I was having platelet problems, but they
discovered it had nothing to do with the plaquenil. I felt it helped with rash issues.
He just decided to keep me off it and put me on the Methotrexate.

Hope the plaquenil works for you and that you feel beeter soon :)

Robin

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 7/22/2009 7:12 PM (GMT -7)   
Mary,
 
I also have mctd for the past 4 years.  What are your questions?
 
Keep in mind that mctd is lupus, scleroderma and polymyositis so flares can be almost any symptoms from the 3 diseases.
 
What treatment are you currently taking?  How long have you had mctd and what were your symptoms? 
 
If lupus is the disease with a 1000 faces, mctd must have 3x that many.  Every case is different.
 
Bill
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.


mary ester
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/22/2009 8:52 PM (GMT -7)   
hi bill, I am currently taking ultram, darvon, atarax, mobic zestoretic, ferrous sulfate, vit D, micro K, was on plaquenl, but had alergic reaction to it. I suppose to start methotrexate and prednisolone on the 28th. Im I goinging to hurt all the time?? Is this normal? I feel as if someone has beaten me up, sore and stiff, no energy, and rashes, swelling, itching, and pain... is this going to be like this all the time?

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 7/23/2009 5:16 AM (GMT -7)   
Mary,
 
The symptoms you are experiencing are common with mctd.  However, you are not taking any controlling meds so mctd is not being controlled.  Hopefully, your doctor can find the right treatment that will get it under control.  Once the right meds are found you should be able to return to a more normal existence.  I have not had a flare in 3.5 years and I had an extreme case that put me in the hospital, completely crippled, for many months.  Today, I lead a fairly normal life but I experienced significant muscle damage from polymyositis.  It is important to get things under control as soon as possible.
 
This can be a powerful disease and what you describe are mild symptoms.  From your description you have not gone through muscle wasting and if you can get the disease under control you should be OK.
 
What kind of a doctor are you seeing? Is he/she experienced with AI diseases?  It is important to have an experienced doctor as mctd, lupus, pm can all be difficult to treat.
 
Bill
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.


mary ester
New Member


Date Joined Jul 2009
Total Posts : 4
   Posted 7/25/2009 5:25 PM (GMT -7)   
hi Bill, I am seeing a rheumatalist, she speicializes in lupus, mctd, and ms. I was diagnosed with mctd last June. I have been tested for everything from hep. A,B, C, aids, alergic reactions, sexual diseases... at the begining. all are neg. Right now Im still having flares... I am swellon with welps on arms, legs, back, shoulders, face. head... my hair is coming out. . . My right shoulders and neck are sore, and hurts, my legs hurs,.... You say this is normal ... Is there anything I need to be asking my dr. ? also what about disability... I finding that it very difficult to work... in t his condition....Should I be asking about different medications... I new at this ... Ive been doing some research... when I came arcross. healingwell. I need some advise... mary

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 7/25/2009 8:07 PM (GMT -7)   
Mary,
 
If you have mctd that includes polymyositis, an idiopathic inflammatory muscle disease, which produces weakness in your proximal muscles (all those around your hip and shoulder girdles).  Weakness and sometimes pain and soreness are common symptoms.  My case was so severe that I was completely crippled but most cases are much less severe.  Most cases are complicated with a variety of symptoms from any of the 3 diseases ....lupus, scleroderma and polymyositis.
 
I cannot explain some of your symptoms so you might have something completely different.  Lupus is a very strange disease and can cause muscle weakness, swelling and pain. It can also mimic other diseases which is why it can be so difficult to diagnose.
 
Suggest you write down ALL your symptoms whether you think they are important or not.  Also list all your tests if other doctors have been involved.  You might consider going to a hospital clinic like Mayos, Cleveland Clinic, Johns Hopkins....  They will try and diagnose you with a team rather than just one specialist.
 
Disability is tough to get and you need a diagnosis to qualify.  I got it but it took 3 tries.
 
Sounds like you are seeing the right doctor if you have an auto immune disease. 
 
Good luck,
 
Bill
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.


twinkiet
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 7/29/2009 11:18 AM (GMT -7)   
HI Mary,

Totally understand what you are going through. I have been dealing with MCTD for a few months now. In the middle of switching drs because I was not happy with my rheumy because he just didn't communicate enough with me and most of the time it took me too long to get an appt when I wasn't feeling well.

Ask away and hope I can be helpful. I have been given, Mobic, Vicodin and was on a predisone treatement. Ambien for sleeplessness. I have a fairly difficult time falling asleep when I am dead tired.

bonzi
New Member


Date Joined Jul 2014
Total Posts : 5
   Posted 7/23/2014 10:24 AM (GMT -7)   
Can anyone relate to this symptom? I have MCTD and I beleive I am presently in a very lengthy flare up. I ITCH horrifically. What do I do for this itch??? It is NOT topical; I beleive it is UNDER the skin. Anything topical, lotions, cremes, ointments are not subsiding the itching. Anyone ever experience this. If so, what did you do to make it STOP. I get no sleep as it is worse at night. Can anyone relate to this? Please advise.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14417
   Posted 7/23/2014 11:42 AM (GMT -7)   
When I itch I put ice packs on the itch. The cold seems to numb the nerves.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/23/2014 12:27 PM (GMT -7)   
Your itching sounds like a sort of neuropathy -- inflamed nerves, I bet. There are meds for this -- some people experience it as more of a pins & needles feeling. Saying "pins & needles" might get a different reaction from your Drs.

My guess would be that either a rheumy or a neurologist could prescribe for this.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

bonzi
New Member


Date Joined Jul 2014
Total Posts : 5
   Posted 7/23/2014 1:10 PM (GMT -7)   
Anyone out there have an answer for bonzi ????? Bonzi's question posted this day.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/23/2014 4:34 PM (GMT -7)   
You don't like the answers couchtater & I gave you?

You posted on a really old thread so the people who posted before haven't been here since 2009 if that is who you are waiting for.

Post Edited (Lynnwood) : 7/23/2014 8:46:48 PM (GMT-6)

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