LUPUS UK
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Mtcd

Thank you for letting me join this group

Iam 36 year old female I was diagnosed with Mtcd in Nov 2016 after a long battle with fatigue , joint pain and anemia Numbness in my arms and legs

It has been a rollercoaster with frequent flare ups despite being on a range of treatment with Hydroxychloroquine

It is very hard to accept the difficulties and how this completely changes your life to a halt and the worst is to try and get people to understand your illness which appear to be invisible to them but very real for me worst of all your own treating physicians !

Iam glad to have joined this and hopefully I will learn from anyone and be able to provide any experiences

All I can say we should remain strong and refuse to be seen as invisible

16 Replies
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Hello and welcome Prima2008,

Look forward to hearing your ideas and experiences and hope you find something helpful here x

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Thank you 🙏🏾I do hope I learn something too

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Hi prima

Welcome to the forum, hope you find it helpful. I can identify with what your saying and like your positive attitude to fight this invisible illness!.

I'm sorry you've had a tough time pre- diagnosis and haven't had much help from Hydroxy yet!. It can take a while to build up but I see you say this about other drugs too. Wonder what you've tried?.

Are you due another Rheumy visit soon?. Am I right in reading you don't feel that your consultants understand too well either?. You could always seek another opinion!. You've come to the right place to see how this has benefitted others.

Keep posting and I hope you feel better soon. X

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Thank you 😊

My Rheumatology is lovely but just don't explain things clearly

But having said that I have resorted to finding more information about the disease n progression n thus far have all your lovely support here on this group has helped n also reading through everyone past and recent post is comforting to know I am not on my own in this

Just had some steroid written up for a few weeks n unfortunately they suppressed my immune system n have now caught a viral infection so am stuck in bed taking antibiotics but coughing n coughing

Rheumatology review is next year in Feb 2018

In the interim will just stay in bed until this infection settles

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Hi prima

Do hope your better soon from the nasty virus. That's the trouble with steroids, makes us more vulnerable to them. It's a constant juggle!.

Glad your liking the forum it's great having you here. Be careful where you research MCTD online, stick to reputable sites like lupus uk and patient as gaining info elsewhere may be worrying and not necessarily accurate. There isn't a lot about MCTD is there?. When you see your Rheumy you can ask to have something explained if you don't understand!. It's important they tell us patients info properly!. Glad there good otherwise!. Hope you r better soon. X

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Hello and welcome! This is a wonderful supportive forum.

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Hello Prima, welcome to the forum! Here you will not only receive a lot of advice and support but also make some really good friends. Xx

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Thank you x

I am already feeling the lovely atmosphere n company

There is nothing so fulfilling knowing that you have people who can listen , understand and openly share what we go through and still be able to put a smile on your face esp on a bad a day

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Hi Prima2008,

Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for support and information.

I'm sorry to hear that you have been experiencing frequent flares and I hope that your consultant is able to find a treatment regimen that works better for you soon.

If you would like information about MCTD, we have a factsheet which you can read and download at lupusuk.org.uk/wp-content/u...

If you need more information about lupus and LUPUS UK we also have a free pack which you can request or download at lupusuk.org.uk/request-info...

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Thank you Paul

I wil read the articles

I am glad I joined the group

That's made my week 😊

Have a lovely day x

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Hello prima , take care , u need regular eyes follow up every 6 monthes maximum

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I'm on 12 monthly eye tests for the Hydroxychloroquine. I will check this out. Wendy

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i would prefer every 6 monthes and a home test by urself every now and then to avoid eyes problems , it caused me bilateral retinal tears in 1 y and half

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Hello Prima2008

Great first post!

We can all relate to your words.

I hope you enjoy being part of this wonderful forum. It's been a life line for me.

Exchanging our ideas and experiences is great.

Wendy

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Thank you !

Iam so glad that I am on my own and have the chance to talk to people that can relate to me and all of us

I hope you are well and like your positive optimism

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Oops sorry for the typo

first line meant to read

I am glad not on my own...

So much for typing x

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