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Hi, I have been to a rheumatologist and was told that I have Mixed Connective Tissue Disease and she is not ruling out lupus. I am returning to her 17th Jan.
My symptoms are:

extreme fatigue
fibromyalgia
dry eyes
+ANA- has tripled in 12 months
constantly elevated ESR (mild)
diabetes 2
hypothyroidism
cardiovascular disease- 3 stents inserted in Oct this year
thrombosed radial artery after angiogram
antiphospholipid syndrome

and since surgery:

worsening fatigue
sunburnt look across my nose and cheeks
maddeningly itchy raised rash on my back and spreading out to shouldners, and now going up nape of neck and into my scalp- scalp is bleeding from scratching it
severe muscular pains and sore finger joints
swollen glands at back of neck and behind ears
difficulty focusing on things
mood swings-cant be bothered with anyone or anything
one lot of eye styes after the other

I am not anaemic though. Does this mean I don't have lupus? does it sound like I do have it? I dont want the disease per se, but maybe if I finally got a diagnosis, they could treat it. kwim?

Thanks for your advice in anticipation,

Happywife
 

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Hello there and welcome,

I'm sorry to hear you have been having so many health problems.
Your symptoms could well point towards lupus, a lot of them are relatively typical for the disease. It is however hard to say what's typical as lupus mimics so many other things.

The diagnosis of MCTD is very important as it is a diagnosis given when no specific auto-immune disease can be determined but is a very serious diagnosis in itself and, most importantly, means that you should get correct treatment. In fact, it is surprising that with that diagnosis you have not yet started treatment (if I understand correctly). The treatment for MCTD will basically be the same as that for lupus so, at the end of the day, having a more specific name doesn't really matter. A lot of members here are diagnosed as having MCTD.

I would want to know about starting treatment if I were you. Has your rheumy mentionned that?

hope that helps,
Katharine
 

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Hi Happywife

By definition a diagnosis of Mixed Connective Tissue Disease means that you have evidence of an overlap of several diseases, including Lupus. However the diagnosis of MCTD is usually clinched if the presence of specific antobodies (RNP and snRNP) are detected. Do you know if these were detected in your bloods? Most people with MCTD will have these antibodies and the presence of a high level of them, without the other antibodies present in Lupus, is reasonably specific for a MCTD diagnosis.

There is another category called Undifferentiated Connective Tissue Disease (UCTD) which is less specific than MCTD. Basically that means that there is clinical evidence and positive blood results present but that the patient doesnt fulfil the classification criteria for one of the established connective tissue disorders, e.g. Lupus. It doesnt mean that they dont have Lupus - there is just not enough evidence for some doctors to specifically diagnose it.

Having said that it is very possible to continue to develop other antibodies over time and often people will have their diagnosis tweaked or changed depending on what is emerging in their blood.

The bottom line is that whatever the final diagnosis ends up being, you definitely have a connective tissue disorder which needs treatment and monitoring. I hope to goodness your Rheumy will start some treatment at your next appointment.

When were you diagnosed with Antiphospholipid Syndrome? Are you on any aspirin or blood thinners for this?

If you have MCTD then, as Katharine says, the medications are much the same as if you had specific Lupus antibodies (like dsDNA for example). By the way not everyone with Lupus has these specific antibodies anyway. Sometimes a patient's 'diagnosis' can depend on the physician and how they are interpreting the blood results.

MCTD is a complicated diagnosis and you will need careful regular monitoring to ensure that treatment is working for you.

Let us know how you get on with your appointment and I wish you the very best of luck. Feel free to ask any questions and dont forget to ask your Rheumy questions about proposed treatments, follow up etc. Its also good to get to know a bit about the various blood tests you are having and we can certainly help you understand them a bit better here.

Oh, by the way, you dont have to have anemia to have Lupus. Certainly it's common enough with some people but not with everyone.

In the meantime here are a few links to information on MCTD which you might find helpful

http://www.emedicine.com/med/topic3417.htm

http://www.merck.com/mmhe/sec05/ch068/ch068f.html

http://www.mayoclinic.com/health/mixed-connective-tissue-disease/DS00675


Take care
Joan:rose:
 

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Hi happywife and welcome :welcome:

You have certainly been through a lot recently :hugbetter:

Some doctors use the term Mixed Connective Tissue Disease (MCTD) incorrectly when they mean to say Undifferentiated Connective Tissue Disease (UCTD). UCTD means that you definitely have some kind of autoimmune connective tissue disease but at this stage they arent quite sure which one. Either way usually treatment is started with an antimalarial, the most common one used is Plaquenil.

How long have you been seeing your Rheumatologist? Like Katharine I'm surprised you have not been started on something already considering your symptoms and your positive ANA and I assume positive Anti-Cardiolipin antibodies.

It's not terribly uncommon for Lupus patients to have coronary artery disease and at a much younger age than most of the general population. They are doing all sorts of research to try and find out why. However that may have more to do with your Antiphospholipid Antibodies than anything else.

Welcome to the site, there is a lot of information here in the sticky notices at the top of each forum, as well as a wealth of personal experience (bearing in mind each of us has a slightly different experience with Lupus). Any questions dont hesitate to ask, there is always someone around who will be able to help or at least can understand and sympathise.

love
Lily
 

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:lol: Joan and I must have been posting to you at the same time, how's that for a quick response :lol:

love
Lily
 

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Snap indeed Lily :lol: Exactly the same time too!

Love
Joan:rose:
 

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I think I may be confusing the MCTD and the UCTD as they don't seem to differentiate between the two language wise over here (or I haven't heard it :lol:). It's clearer now.

Katharine
 

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Discussion Starter #8
Hi, thanks for the replies- quick ones at that! :) I have been seeing her on and off for 2 years now. Last April she was going to start me off on Plaquenil but I baulked at it because I had heard some negative things about it. Now I feel so ill, I will gladly take it.

Thanks for the replies again,

Glenys- Happy wife :)
 

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It's not Lupus!

I have just got back from my rheumatologist visit and it is good news! I don’t have Lupus- or any other auto-immune disease at the moment. After my ANA + reading tripling over the past 12 months, this last barrage of tests read a negative result. All bloods were within normal boundaries! I still have fibromyalgia which is a pain all over, and I do have sleepless nights with it. But, after hearing that I do not have lupus, it is bearable.

I am rapt and praise the LORD for His goodness!
 

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Hi there,

I'm glad to hear those results came back good for you. Obviously you will need to keep an eye on things but hopefully you can find some good relief from the fibro symptoms and things will look up for you.

Katharine
 

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You will surely be pleased that your doctor thinks you don't have a connective tissue disease on top of fibromyalgia and I gather from your first post already diagnosed 'antiphospholipid syndrome'. I very much hope you don't and of course I'm not in a position to comment on her opinion!:lol:

However, you do seem to have had a lot going on, not obviously related to fibro and symptoms are more than half the story: blood work alone can't rule lupus in or out. I guess you are feeling much better too.
It would be a good idea to get checked from time to time especially of course if the symptoms return or new ones develop. Lupus can come and go for varying lengths of time; there can be even long periods of remission that will give a false sense of security. I hoped urine was tested by the way.

If the connective tissue disease (whatever it's called) should start up again you need have no fear of Plaquenil. It is no more harmful than OTC meds that people take without a second thought. The majority of people have no problems with it, just benefits, and take it for years.

Here's to life long remission ! :)

Clare
 

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Also, I hope you have been placed on medication for the fibro. There are many that can help with the pain and sleeping issues. Are you on any kind of treatment for the APS such as baby aspirin?

I am glad to hear you have improved, but it doesn't sound like it's all gone. Please be sure to revisit this rheumy should symptoms worsen and be rechecked from time to time. Take care!
 
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