New Patient

I am a 26 year old female and I am a new member to the community of Hughes Syndrome, being confirmed with a diagnosis of connective tissue disease only last week after a 3rd opinion I got from a series of experienced Rheumatologists. Ever since receiving the news I have felt confused and lost knowing there is only irreversible progression of my disease. I have currently been put in Plaquenil 200mg/day and have started medication today.

I hope you can give me some kind words of support. My family is based in London, and I was wondering if young adults like myself have been faced with this condition, and how one copes with the knowledge on a daily basis? Also what can my family do to help me? They currently listen to my daily ramblings but no matter how I clearly try to express myself I am reverted back to the initial diagnosis made by my Rheumatologist and it's prognosis which really worries me.

I am currently studying medicine, and my life has really changed, I work hard to battle my symptoms, as well as balancing life around me. My condition does not fall short of anything less than being a trouble and a worry.

Looking forward to your support and kind words.

2 Replies

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  • Hi there, welcome to this forum, you will find the support and advise on here good. Firstly it is good you have access to London, as this means you will be able to use St Thomas' Hospital easily if you have not already done this. Secondly I am pleased to hear you are on Plaquenil, it works so well for many people, (for me it did not), but my 15 year old daughter is doing very well on this - she has Hughes and Systemic Lupus. This drug is slow to work, and you will notice the difference after months rather than weeks

    . Have you the diagnosis of just Hughes Syndrome or do you have a mix of diseases? Lots of us have several. It is common for Hughes to go with Sjogrens and Thyroid issues, as a trio of disease. Please let us know if you need any more information. Our patient day is coming up at St Thomas' in May, and also we have films and medical papers available. If your medication is correct ie, the aspirin/plaquenil and perhaps other anticoagulants - depending on what your team feel is right for you - will be the deciding factor on how well you feel. Are you under a specific rheumatologist with APS knowledge? This is crucial. Come back to us/me if you need any further information, and glad you have found the fourm..

    if the Plaquenil suits you, after a while they should increase it up to 400 mg!

    Mary F x

  • I'm also a hughes syndrome newbie and yes, can relate to the feelings you describe. This forum has been tremendously helpful since my diagnosis and I would advise that you use it as an outlet to express yourself, ask questions and so on. It is reassuring to discuss with those who can also relate on an emotional level. On a practical level, there is also a wealth of knowledge to be tapped into and members willingness to share has been invaluable so far, enabling me to begin to feel more comfortable with the diagnosis.

    I hope that within time you're able to find some form peace with the diagnosis and with treatment, the symptoms subside. There is definitely ample support and help to be had :)

    Helen xxxx

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