[Vicky977]

Hi everyone,

I'm new to this site, and I should have joined years ago. After lots of tests, appointments with the rheumatologist and more tests, I was given a diagnosis of Mixed Connective Tissue Disease. I also went for tests abroad and I was diagnosed with having SLE. I took the results back to my own specialist and he said, I think you could have Lupus and most of your symptoms are saying you have it, but some of your other symptoms mimic other connective tissue diseases, so he diagnosed me with having the mixed connective tissue disease.

What else can I do, he thinks it is Lupus, but not prepared to diagnose me, I'm not feeling I can cope at the moment, and am feeling so low about this, I feel as if I'm not in control of my own life at the moment, and keep forgetting really simple things. I just feel like I have nowhere to turn and that no one understands what I'm going through, I have great friends, but I don't feel they really understand, and I don't want to go on about it all the time, I try and keep myself healthy through exercise and diet, keeping my mind active, I work and I'm studying, but I just need advice on what I should do, from someone who can empathise with what I'm going through, as I'm not coping too well.

Thanks Vicky

 

[Katharine]

Hello Vicky and welcome,

When you say that your doc (I presume a rhuemy) refuses to diagnose you, does this also mean that you are not recieving any treatment?

I am a little confused and quite concerned about that as a diagnosis of MCTD is also a serious diagnosis and basically leads to the same treatment as lupus. So much so, that what they call it doesn't matter to the patient at the end of the day.

If your doc is not treating you, whatever he calls what you have, you should seriously consider a second opinion elsewhere as it is important to control the disease and also to treat pain, depression or any other symptoms that you may be suffering.

Maybe if you tell us a little more about treatment etc. we can help a little more,

In the meantime, I'll send hugs and fortifying virtual Belgian chocolates
Katharine

 

[joirish]

Hi and welcome

:wavey:
Hi Vicky,

First welcome to this site.

Reading your story it I could relate to it. I was first dix with MCTD and wasn’t happy with my dix for a long time so my cousin organised an appointment for me in the UK for a 2nd option and it was confirmed that i had LUPUS(something i already knew myself).

Where r u from??

When I went back to my own Rheum’s i had a hard time trying to get them to continue on the treatment that doc in UK wanted to start me on but I have a fantastic GP who believes in me. It gave me back my life i was so glad i stuck to my guns and started on anti-malarials.

What I would say to you in believe you know your body better than anybody else, if you have to go for another option or can you change Rheum’s???

Keep positive,rest when you need it and most important believe that you know your body.

Sending you loads of hugs,
Jo:grouphug2:

 

[Vicky977]

Reply to Mixed Connective Tissue Disease and Lupus

Hi Katharine and Jo,

Thank you for your replies. I'm from the UK, and have been seeing a rheumatologist here. Initially I was diagnosed with having rheumatoid arthritis, I was being treated for this by anti malarial tablets. These made my skin go white in patches (I'm off indian origin). After further tests I was told I didn't have arthritis and that I had a connective tissue disease but the rheumatologist wasn't sure which one. I was confused at the time as I didn't really know much about it. So I went abroad to Goa and was tested over there and saw a specialist 3 years ago. He diagnosed me with having SLE. So I came back to the UK and gave the results to the rheumy over here. He just said some of my symptoms show I have Lupus, but it could also be another connective tissue disease, so thats why he's now diagnosed me with having MCTD. He wanted me to go on steroids as the swelling and pain in my hands and feet were quite bad. When I first started getting this my hand was like a claw, after physio I can now make a fist again, but I don't have much strength. Bones oin my toes have started to become a bit deformed.

The only meds I'm on at the moment is diclofenac, but then after taking the meds which made my skin go patchy white (skin is back to normal now) I have been scared about taking other meds without getting a proper diagnosis.

I have recently moved so I am having to build a relationship with my GP and meet a new rheumy, so it may help, but my last GP was brilliant and would put me on the priority list for physio or whatever I needed, finding good GP is very hard!!!

I just want to know which connective tissue disease I have so I can start living again. I've looked at different websites, read books but I don't knwo what advice to take. I also have Raynauds, and just before I started getting the joint pains etc, I suddenly became very allergic to Oranges, Peppers (vegetable) and chillies, I don't know if all this is connected to each other.

When seeing the rheumy, what other things should I be asking for? As in tests to be done. My ana result is not 'normal' and my vitamin levels go up and down, they're never consistent. All I have done is blood tests, what else should I ask for?

Sorry I feel as if I've written an essay, but sometimes I feel my new GP is just not interested.

Thanks Vicky x

 

[LolaLola]

Hello Vicky and glad to have you here.

Kaharine is so right the treatment etc. should be much the same whatever the dx. Antimalarials are always the best starting point. I take mapacrine, the older version of Plaquenil which I am allergic to. I wonder if this would benefit you without upsetting your skin.

Certainly you need to learn all you can about Lupus/ Mixed connective (or undifferentiated) tissue disease.

It sounds to me as if you are doing far too much in order to keep going. Whatever way you look at this you are ill and have a perfect right to downsize where you can.

Also, the problems you have, no matter what you call them, may well mean that you would qualify for some rate of DLA,why not try. It is a real help, although some times hard to get.
x Lola

 

[Clare.T]

Welcome to the site Vicky
The fact is you may never know exactly what you have because your particular set of symptoms might not have been given a name. These diseases aren't like infectious diseases where each is a distinctly definable entity.
A diagnosis means that doctors have decided that they are going to call a particular set of symptoms by a certain name and they have a patient who neatly fits into that particular box.
But many people are not typical cases.
In the case of MCTD it was one Dr Sharp in Germany who proposed to name a set of symptoms he thought he had observed very often together in patients, that had the characteristics of polymyositis, lupus and scleroderma plus a number of other features such as Raynauds which is 'almost' universal in the grouping and a very high titre of anti RNP antibodies.
Most doctors agree on the anti RNP antibodies but there is some difference when it comes to the ANA- some sites say no ANA and others say very high titres. So it really is an artificial construct with little practical relevance
That diagnosis (that's to say 'labelling') is somewhat controversial: there is discussion how useful it really is. Maybe the name will be changed and maybe new groups and thus new names and diagnoses will be adopted when they discover new antibodies.
The disease in any individual is the symptoms, not whatever name is given to them.

It is possible to fulfill the criteria for both MCTD and SLE. Sometimes one of the three diseases comes to predominate. Autoimmune connective diseases are all treated much the same except that some treatments are not effective for all and some are harmful to others. For example one of the drugs commonly used in RA can make lupus worse and some that are effective in lupus are not so indicated in myositis or scleroderma. Add to this, that doctors have different diagnosing habits and patients have varying responses to drugs either how much benefit they get or how many side effects.
Treatment for Raynauds is the same whatever disease it is secondary to.
I am not sure that the Mepacrine wouldn't also risk causing discolouration such as skin lightening or even darkening. It can cause an unacceptable yellowing in Caucasian skins but I haven't experienced it. I do however have darkening of my nails and on the roof of my mouth, not that I care about that. Reactions are very individual so you can't know until you try it exactly how it might affect you in this respect
You need to be off the Prednisone as much as possible.
The next step usually would be the disease modifying, steroid sparing drugs such as Azathioprine( Imuran), or Methotrexate which is often used when arthritis is a major disease feature

All the best

Clare

 

[Vicky977]

MCTD & Lupus

Hi everyone,

Thank you for your messages, I feel a bit better about things than I did the other day, I've been having a bad week, and just feel so tired. It helps to speak to others who have experience of this. I'm going to make an appointment with my GP this week, and see if he can hurry up my appointment with the rheumatologist, I've got a list of questions to ask. I'm also going to continue my reading on the subject.

So thank you all again, if there's anything else you could think I need to know, please let me know. I'm reading the other threads to see what everyone else is going through, but than k you again for the welcome to this site.

Vicky xx

 

[cad]

Hi Vicky,
I was a bit teary reading your first post on this thread, just beacause i too am having a really bad week, i am yet undiagnosed but really empathised with how you said you felt.
I really cannot get full relief from pain at the moment and i have felt like dying this week. This morning i even had pain in my jaw and face, my neck was unbearable. I still have 3 weeks till i see the rheumy but my gp said today he was trying to get me an emergency appointment so i might be seen tommorrow if they will squeze me in.
Anyway enough about me me me!!!:rotfl:
I was just interested in you saying that you had only had bloods done. From what i have read in order to diagnose diseases such as scelorderma or systemic scoliosis it is neccessary to have x rays to confirm calcification around the bones or nodules in or around other organs in the body (please anyone correct me if i am wrong!) So it seems to me that perhaps bearing in mind what you have said about your fingers and toes that you should push for x rays if they haven't already been done!
Hope this helps!!

Cassie

 

[Vicky977]

MCTD & Lupus

Hi Cassie,

Thank you for your message, I have had xrays done, I've also had a colonoscopy. I've had a few xrays now and my joints have changed and become a bit deformed in my toes. I've been to the GP today, as I'm feeling low again this week, and he's going to also push for the Rheumy to see me as soon as poss, I still haven't been back on my meds, and I have started to get panic attacks and dizzy spells. I just feel like going to sleep and not getting up, but I know once I'm on track I'll feel better about things.

I hope you get to see the Rheumy as soon as you can, getting a diagnosis is really hard, but then at least you can be treated properly. I'm also going to see a counsellor again, this site helps but it's good to speak to someone face to face too.

Sorry I took so long to reply I haven't had the time to spend time on the comp recently.

I hope you're feeling a bit better.

Vick xxx

 

[annejlynn]

MCTD,me too

Hi Vicky,
I just found this site and this is my first post. I did not know there was an acronym for Mixed Connective Tissue Disease - oh goody.
I started out with RA diagnosis last May. Started MTX treatment with steroids and anti-inflammatory (Naproxene 500 2xday). Last Nov I got a bad rash on my face and top part of back -they biopsied it and it was SLE. So, now I have the MCTD diagnosis - my rhuemy added plaquenil to the menu and I have felt better. He calls it a MCTD and says I do have SLE and RA together plus who knows what else?? But, the meds have made it so I can function pretty well. I get tired easy and at the end of day am usually pooped. If I get sick or under the weather it is harder on me than before. I am only 45 and have an active life with 3 kids. In the beginning I was very focused on finding a name for what I have - now I can understand a little better that it really doesn't matter what you call it - they don't know much about any of it anyway. So, I just try to be grateful that I am able to exercise and get around well. This is a hard pill to swallow.
Hang in there.
Jenna

 

[nemo_importante]

Hi

I have only just noticed this post as I haven't been on the site much just lately as haven't been well. I have UCTD, which is now being termed MCTD as my bloods have changed a little recently plus psoriatic arthritis/RA, not really sure which! At first I wanted what I called a 'proper' diagnosis,but then after discussing things with my rheumy, I realised that UCTD or MCTD is just as good a label as actually being diagnosed with SLE. My rheumy explained that my case wasn't clear cut and was a little complicated and therefore she couldn't diagnose me with one specific connective tissue disease as I have the symptoms for more than one. I am currently taking azathioprine and prednisalone, which i am rducing the dose of as I increase my azathioprine. The treatment that she has me on is the same as she would use if it does turn out to be lupus, so I am happy with that and now don't really care what label I have, I will still have the same symptoms and treatment no matter what it is. Hope this helps.

 

[Vicky977]

MCTD & Lupus

Hi Jenna,

Thank you for your post, I have been having a better week, I am only 31 and was first diagnosed with RA when I was 26, after getting food allergies and then the stiffness in joints and my hands were claw like. I was first given celecoxib, which I was told to come off as they could do more damage than good. I then went onto plaquenil, which made some of my skin go white, I was then told I didn't have RA and was left undiagnosed for some time. I went for a second opinion abroad and was diagnosed with SLE, the tests were very thorough and the specialist was brilliant. My rheumatologist in the UK then diagnosed me with MCTD as he says my symptoms mimic a few connective tissue disorders. I was coping quite well until just before christmas, I moved town and my new doctor hasn't been very helpful, he still hadn't put in a referral to a rheumatologist when I went to see him last week. So I have changed practice and my new doctor put in a referral on the day I went to see her, she has also got me booked in to get my bloods done, and seems much more interested in what I'm going through than the other doctor. I think I was feeling down, because of some personal things in my life and also having a doctor who wasn't very helpful, I can still do things for myself, but I'm needing some support at the moment, I've always been very independant, but I acknowledge I need to ask for help from time to time, currently I'm on no medication and would like some support on how to help myself more. I've spent all day in bed today, and I'm still tired, but this could be because I'm feeling quite low even though this is a better week, I know my limits and don't over exert myself, but I just need the extra support at the moment. I also need to find out my options for relieving pain, I have refused steroids for the past few years and I want this to be the last option, but I know I need something. I have tried diclofenac for a few years now, but these give me stomach problems, so I haven recently stopped taking these.

I agree with you that it doesn't really matter what it's called as long as your getting treated accordingly to the symptoms you have, but I'm not really getting this, hopefully this will change with my new doctor and rheumatologist.

Thank you for your message, it did help.

Vicky x

 

[Susan N]

Hello Clare, Vicky & everyone,

Clare I think your reply is a very balanced explanation of MCTD (or as my Rhuematoligist calls it UCTD). The whole issue of MCTD is not helped by some leading Rhuematoligists (in the UK at least) not recognising it as a specific disease. Because I was deemed to be quite well with mild symptoms & lucky not to have a real disease like Scleroderma, I felt they were missing something as I was feeling so retched. This does not help as you feel you are exaggerating. I see a different rheumatologist now who still doesn't use MCTD as a title for what is wrong with me but who has prescribed Plaquenil, & now seems much more sympathetic. Although as i am covered at the moment with insurance I have always seen the top specialist. Sometimes I wonder if I would be better on the NHS as the senior rheumatologist would be mainly helping those who are very sick organ failure etc. in the NHS. My constant migraines & fatigue must seem trivial compared to what they see on a daily basis. However, I do accept that the consultant I see does view UCTD as an illness & am happy with this diagnosis now, just think it is not easy for those who are newly diagnosed.

Cad, I sympathise with you about your jaw face pain. I suffer from what could be described as migraine but is sometimes in my face but mainly in one ear. I cannot think straight & feel sick often can do nothing but go to bed. At one stage was having once to twice a week( during period of stress). It completely knocks out three days. I have also gradually gone deaf (35% in one ear) & am sure it is related. My question is, does anyone know if Plaquenil may help this? My Rhuematologist thinks it is Raynauds cause the headaches - I am on Losartan & Amlodopine for this. I can't take migraine drugs (Tryptins?) as the Amlodipine works in opposite way & I am also prescribed Amlodipine for Raynauds Heart spasm. Haven't started Plaquinil yet as just been diagnosed with oestioporosis & started Strontium Relenade. Want to wait three weeks for my body to get used to Strontium.

Sorry for long post
All the best,
Sue

 

[x_claire_x]

Hello Sue..this is an old thread dating back to 2008 so I am afraid you won't get any replies from these members.

Iam going to close the thread..but please feel free to start your own thread with this topic if you would like some discussion/input from others.