[christianirc]

I found out today my Dr. has changed my diagnosis from SLE to MCTD. So I did a search and found some very informative, but frightening articles. I'd like to hear from someone who has MCTD about what kind of treatment they are on and if it is working well for them. According to what I read, remission is rare but they aren't always accurate in those articles.

 

[Tom]

Gosh Brenda, I don't know anything about it but hope you can get better treatment now. Hopefully they don't change their minds again in 6 months!

Take care of yourself and let us know how everything goes for you.

 

[Katharine]

Hi Brenda,

The treatment is basically the same but some other things might be considered.

My doc still says lupus but as I seem to have a polymyositis overlap she also sometimes writes "Mixed connectivity" (she wouldn't write MCTD because it's in French :rotfl on her reports.

My treatment is the same but for polymyositis the need for physio is even more important and sometimes prednisolone is needed on a longer term - for example in my case I have breathing difficulties when we try and reduce it.

Katharine

 

[helloos]

I have heard that the doctor sometimes puts it listed as that when you don't just fall under one catagory such as Lupus. I do beleive the same treatment too.

Do you know why your rhemo changed your diagnosis and how did he explain that to you?

 

[christianirc]

Thank you for your replies. I'm sorry, I didn't know I had any as I didn't get the normal email message.

I don't know why it was changed and it wasn't explained to me. I went to my GP to get some medication refills and he told me "So I see you're diagnosis has been changed to MCTD and you've been placed on steroids" which is a big deal because I've had a really bad reaction to steroids in the past. I just said. Oh and he went on with writing me the prescriptions and the appointment was over before I had a chance to question him.

Last time I saw the rheumy I was having some severe muscle weakness problems and my inflammation level hadn't gone down despite steroids. That and some joint pain was really the only difference I think.

Edit: I just remembered he did a lot of bloodwork. Maybe that showed something? Not sure.

 

[Lily]

Hi Brenda,

Your details still list that you are to receive emails notification to threads so there must have been some kind of cyber glitch. I don't use that facility so I'm not familiar with it, but if there are any more problems do let us know.

love
Lily

 

[christianirc]

Thank you Lily. I did get the notification of your message.

 

[nemo_importante]

Hi

I have a diagnosis of UCTD/MCTD. In my case I have several overlapping connective tissue diseases. I am currently on azathioprine and prednisalone (which we are trying to reduce). Basically my rheumatologist treats me to cover all of the conditions that I have.