[Mel32]

Hi everyone,
so I went to a new rheumatologist today who was so helpful and thorough and actually listened to what I had to say. She said I have MCTD and that first I needed to take vit D supplements (I am deficient) and then after taking the vitamins for a while she would start me on Plaquenil. I have been to two other rheumatologist and they said all I had was fibromyalgia. So my question is can I truly have this MCTD that my doctor thinks I have. I did have a positive ANA titer but the tests for lupus and Sjorens came back negative. She does not want to do any more testing (bloodwork )at least not now . She did a full exam in her office with me today and physically looked and touched my arms legs etc.. so I wanted to know is this a likely diagnosis and now can I rest knowing what is wrong, or is it probably a mis diagnosis? Thanks so much.

 

[Allerian]

Well, it depends on what symptoms you have with the pos ANA. Generally, mixed connective tissue disease is it's own thing. It's not just that you have symptoms of multiple diseases. Usually RNP antibodies are positive. Usually if they run an antibody panel for lupus stuff it's included. If you are really unsure about the diagnosis you can call the doctor and ask them why they think you have MCTD vs. Fibromyalgia.

 

[Lily]

Hi Mel,

As Allerian said a diagnosis of MCTD is usually arrived at by having symptoms of that disease and high RNP antibodies in blood. Do you know if that test was ever positive? Usually it is part of the whole slew of testing they do for Lupus and you said they were all negative apart from the ANA.

Maybe this doctor meant Undifferentiated Connective Tissue Disease (UCTD) ? Some doctors mistakenly call it MCTD but it isn't. What it means is that you have signs and symptoms of some kind of connective tissue disease but they aren't sure if it will develop further or stay as UCTD. A lot do stay that way. Either way treatment is the same for Lupus, MCTD and UCTD and Plaquenil is the right one to start on.

Has someone tested your Vitamin D level in blood and realised it was deficient? It's very important for a correct functioning immune system and a deficiency can also cause a lot of aches and pains, not to mention some other fairly serious problems. I note you have a diagnosis of Hashimoto's? Do you see an Endocrinologist for that? Vitamin D deficiency can also be a sign that your Parathyroid glands are playing up.

love
Lily

 

[Mel32]

Mctd

Hi everyone, thanks for your responses. The bloodtest that you mentioned as part of the lupus workup was not done. I guess I should push to have it done. I am seeing an endocrinologist but I actually am going to Hopkins since I have a multitude of endocrine problems. Do you think at Hopkins they will work on the immune problems I am having or only the endocrine problems, even though one of them is autoimmune. Thanks again for your help and insight.

Mel

 

[Lily]

Hi Mel,

John Hopkins has a very good reputation. I would definitely mention your immune problems and test results to the Endo team!

They may deal with it or they may even suggest an Immunologist seeing as how you seem to have a few multiple problems going on.

I actually see an Immunologist for my Lupus because he deals a lot with Autoimmune and I was initially sent to him because they couldnt work out what the heck was wrong with me :lol:

Can your GP run the RNP antibodies test? If so then it's usually part of what is called an ENA panel of tests. That is about 5 things they test in one go.

http://www.rcpamanual.edu.au/sections/pathologytest.asp?s=33&i=15

Good luck and do let us know how you get along.

love
Lily

 

[Katharine]

Hi there

You might find this link useful. It talks about the differences between MCTD and UCTD.

http://www.medicinenet.com/script/main/art.asp?articlekey=16955

I'm so glad you found a rheumy that takes you seriously and who's going to start you on plaquenil. At the end of the day, the name of the diagnosis is a lot less important than getting the right treatment. Treatment for fibro alone would not be enough to relieve symptoms of UCTD or MCTD if you have those.

Katharine

 

[KarolH]

My RNP and SCL 70 both came back high along with a positive ANA, yet my lupus anticoagulant and ANA titer came back fine.

I think they look at the whole picture, blood work combined with the 11 step criteria...............at least that is what my Rheumy doctor told me.

The doctor told me I do not have Scleroderma or MCTD even thought my blood work seems to point in that direction.

 

[Clare.T]

Hello Mel

The main thing is to have a diagnosis of autoimmune connective tissue disease. Many people do not have clear cut cases meaning they don't fall neatly into the little boxes labelled SLE, Sjogren's, MCTD ..........
They might not meet the criteria of test results and symptoms that have been listed to describe those specific CTD's. It isn't like mumps, measles or chickenpox.
A positive ANA usually of a titre at least 1:160 is all that is required for an SLE diagnosis, assuming there are relevant symptoms. Many doctors will diagnose UCTD instead when there are no specific signs of lupus or any other specific autoimmune CTD.
Doctors have different diagnosing habits just as they can have different prescribing habits . It doesn't necessarily mean they don't know their job.

My question would be about 'after a while' she will prescribe Plaquenil. How long is 'after a while' and why not start on Plaquenil now. I would want to know why the wait. She might have very good reasons for waiting but you have the right to know what they are. Make sure urine has been tested.

I hope you feel reassured about the diagnosis. It is unlikely that endocrinologists will busy themselves with CTD's or other automimmune conditions unless there is some relevance to the endocrine issues.

Please let us know how you get on. I hope you will get answers soon and be able to start on the road to better health

All the best
Clare

 

[Lily]

Hi Mel,

If it wasn't the endo team that discovered the Vitamin D deficiency then make sure you mention it to them won't you.

love
Lily

 

[Mel32]

Mtd

Hi everyone, thank you all for your support and advice ! I will let you know how things progress. I have to wait to start on the plaquenil because my doctor says if i take both the vit d supplement and plaquenil at the same time and if I start to feel better I will not know which medicine is helping. So she wants me to start with vit D and then go on to plaquenil. Also they only checked my urine once and it came back normal, which is strange because I have a history of reoccurent UTI;s as well as kidney stones etc..
Take care everyone ! Also one other question. There are 2 big labs here where I live and I have been going to lab "A" but my docotr said lab "A" is not good and go to lab "B" so I did and the same bloodwork, same test came up with vastly different values. So should I repeat all of my autoimmune testing at lab "B" since it was only tested so far at lab "A"

Mel

 

[Lily]

Hi Mel,

A good question to ask your doc, I'm sure he will retest you in the future and if you go to the lab he recommended and keep getting them done there then that's probably a good idea.

Labs do tend to jump around a lot for us and aren't a very reliable indicator of how we are doing sometimes. However they are very good for diagnosis. I wonder why your present Rheumy is not re-running all your autoimmune tests again anyway in light of what was said about the first lab not being very good?

As far as your Urinalysis being ok and your past history of UTI's and kidney stones then they are looking for different things when they look at lupus related kidney problems. So it's good that it is ok. It should be retested periodically though to make sure everything remains ok.

love
Lily

 

[Mel32]

Question about Plaquenil

Hi everyone, you have all been so helpful I thought I would pose another question. I have started taking plaquenil twice a day (200mg) I have only been on it for 2.5 weeks but today I started to notice that when I look at things that are supposed to be red they appear orange or a variant of red, not the true red they are supposed to be. I know I am not going crazy cause I keep asking my husband to verify if the color I am looking at is actually what I see or someting different. And what I see is different from my husband. Is this someting to worry about? I know plaquenil can cause problems with your eyes but I thought it was extremely rare. Thanks for your help and advice. Happy fourth to all !!

Mel

 

[Lily]

Hi Mel,

It is quite rare, but it can happen. What you describe is exactly what can happen, in fact one of the things that my Optho said I could do between appt's is look at a red object and if it had changed it's shade of red to go straight back and see him. I would get an appt, telling the nurse exactly what is happening and ask to be seen sooner rather than later. That's if you have an Opthamologist, if you don't then contact your Rheumy straight away.

I would not have thought this would happen in 2 1/2 weeks though, this drug takes time to get in our systems, much longer than that. However as it's such an alarming symptom it needs immediate attention.

love
Lily