Newly diagnosed, saying hi!

Hello everyone,

My first post on this website. I was diagnosed with Lupus 4 weeks ago at the Louise-Coote clinic. I’m a very sociable single 31 year old female living in London. My Lupus symptoms are joint pains (my hands/fingers lock into place and I can’t straighten or create a fist), reynauds, rash on cheeks and I’ve tested positive for some of the blood antibodies. I’ve suffered with an overactive bladder for the last few years but it’s thought this is not connected to the Lupus. I also started to get double vision last Summer which may or may not be linked (MRI scan is clear, waiting to see a neuro-opthamologist). On the whole I feel fine and healthy and having read a lot of Lupus patient stories I am relieved not to have worse symptoms. The joint pain and double vision have both been hard to live with, but I’m now on a short course of steroids which has helped with my hands. I think my doctor wants to put me on hydroxychloroquine long term. Anyway, my post is really to say hi, but also as a newly diagnosed patient I wondered whether or not things will get worse for me over the years? Do new symptoms constantly crop up? With the tiredness worsen with time (I’m already starting to feel tired more often, and more ‘confused’ which is a little scary)? I know it’s probably hard to say and everyone is different, but if anyone has any insight or just wants to say hi I would love to hear from you.

Rachel

4 Replies

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  • Hi Rachel, welcome to the site:) You are like myself a relative newbie to all of this. It is a really useful site and those that have had the condition for years have soooo much knowledge and tips on how to cope. I am, however, able to comment on the hydroxy as I have been on this for the past 1.5 years - it has helped me loads with joint pain, and stiffness and has slightly with the fatigue too. I have had no side effects from taking it personally, it does take a few weeks to start working though. I think it can even take up to 6 months to become fully effective.

    I think the biggest tip I can give is to contact Lupus Uk or go onto their site and read through all the leaflets available about lupus which all come from a reputable source. Lupus UK also has books/dvd.s that you can purchase to learn more about the condition and a dvd for your family to watch to enable them to understand the condition better.

    There will also be various support groups for lupus in the London area that you could access too. Again this information will all be on Lupus UK website.

    Great to see you on site Rachel and I hope you get lots of answers to your questions and all goes smoothly with the condition too xx

  • Hi Rachel :) Almost 30 years down the road with the big bad wolf and, hey, it's not managed to see me off yet! I think the journey is quite different for all of us lupies but it is a progressive condition. Never a bad idea to plan for the worst but expect the best, especially as regards finances! Welcome to the fold anyway! x

  • Hi Rachel i also live in london and hav most of the symtoms, this is a great place to make friends, get support and advice... Take care... Uzi

  • Hello Rachel & welcome. You are in the right place to learn about your condition & how best to cope with it. Although, as everyone has said we are all differently effected. Ask questions, & make comments & you will learn lots along the way.

    Get to know local lupies at your support groups, or again through this sight. If things do get tough it's great to have people to talk to who really understand what your going through.

    But hopefully, now you are diagnosed, you will get the right treatment to keep things under control.

    Very best wishes. X

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