Hello everyone: Hi everyone I am new to this forum... - LUPUS UK

LUPUS UK

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Hello everyone

Jess8989 profile image
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Hi everyone

I am new to this forum as it was only recommended to me today. As horrible as it sounds, it is nice to know that I am not the only person who is having a rough time.

I have only just been referred to a rheumatology clinic in Leeds after 7 years of being told my pain is all in my head and its all caused by stress. I've tried a few medications and as of yet nothing is working or is causing me to have migraines. The next meds they're wanting to try is methotrexate. I'm a bit nervous about this and wondered who else may have been using this medication and how it makes them feel and any side effects.

I feel a bit lost in this world of complicated medication and blood tests and any recommendations or help anyone could offer would be great.

I'm currently having another flare up and i'm chair/bed bound. I'm only 25 and feel 100!!

Thanks

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Jess8989
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Debbiemay profile image
Debbiemay

Welcome to the mad world of lupus. Diagnosis won't make it better but at least if you can get the right combinations of medication things should start looking up. I was diagnosed last year after years of being told it was 'just arthritis' I currently take methotrexate I've had good results so far and better than hydroxycloroquine but my inflammation levels are still high so rheumy has doubled the dose. I hope your flare subsides and you're feing better soon.

One think I should mention is that methotrexate takes a few months to get into your system, I was given an injection when I first started taking it which helped in the interim although again this took a little time to take effect so may be worth asking for this too.

johare profile image
johare

Well come to the club. I have no experience with this med yet, but would just like to say as the the previous person, getting the diagnosis is half the battle. Don't worry too much about side affects. The list on the packets are always long and cover the makers for everything. Try the med for long enough to give it a chance, if it gets you out of bed its worth it. Good luck and keep us updated.

Diagnosed2012 profile image
Diagnosed2012

There is a lupus patients group that meets at Chapel Allerton Hospital in north Leeds on the first Thurs of every month 10am-1pm

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