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After a good few years being treated for sjogrens syndrome, I've now been diagnosed with SLE - after been rushed to hospital with difficulty breathing - pneumonia and to top it all, a DVT in my left calf which I didn't even know I had. Been on untold meds for the past year - feel like a pill factory - and since the beginning of this year now have high blood pressure - even more meds. So desperate to stop contaminating my body any further with all these different meds, but been warned my rheumatology consultant not to stop taking. I want my normal life back!!

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  • Hello Taylor.

    I will never forget how i felt when i first got diagnosed with lupus. I felt low. Felt no one supported me and most of all i said to myself why me. I got really depressed over it. But it have been 4 years since my diagnosis i still struggle now with the symptoms and day to day life. But you seem to work with it and get to know your body. You will life day by day not knowing what your going to be like they next day. But you will be ok and get used to the idea. This site is where i found comfort in. They are really supportive and understands as they are going through the same thing. I hope your taking loads of rest and looking after yourself x

  • Hi blondie22,

    Thank you for your kind words. I have my good and bad days, at the moment feeling really low trying really hard not to get depressed. Saw my consult yesterday meds working to keep my lupus under control, but blood pressure has gone up again so have to increase dosage not happy with that, but needs must. Will keep you updated with my progress.

    Regards.

  • You will most definatly get your good days and bad days. It is good the tablets are making you stable. You will get there. We are all here for you don't forget that x

  • Welcome taylo23,

    You are right, it is a tough road to travel, but when you have companions - even virtual ones - like the people here, it is just a little easier.

    The expertise here is also formidable. I imagine that between us all, we've consumed the annual output of the the global pharmaceutical industry several times over, and most will sympathise with your wish to cut down as far as you safely can.

    Keep in touch x

  • Dear Whisperit,

    Thank you for your comments. Will definitely keep posting with updates.

    Regards.

  • Hi Taylo23,

    Welcome to the LUPUS UK HealthUnlocked Community!

    Using an online sociable forum such as this one gives you the opportunity to connect with other people who have lupus and can help relieve the worries you may have by hearing other peoples’ experiences. We offer a free information pack containing factsheets, guides and a list of helplines and LUPUS UK contacts which you can download or request here: lupusuk.org.uk/request-info...

    I’m sorry to hear that you are struggling with the amount of medication you are currently having to take and the side-effects you have to deal with. It can unfortunately take a little while to find a treatment regimen that will suit you because everyone with lupus reacts differently. I hope that they can find a regimen that will help to bring your lupus under control with minimum side-effects soon. Many people find that after a while on a suitable treatment, the lupus activity will decrease and then they may be able to slowly and carefully reduce the amount of medication they need under their doctor’s supervision.

    We published a blog article called ‘Diet & Healthy Eating’ which discusses the importance of eating healthily to i.e. reduce high blood pressure and increase energy levels which you may like to read here: lupusuk.org.uk/diet-and-hea...

    Please keep us updated, wishing you all the best.

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