Medication question?: Hi all, Im 33 and I was... - LUPUS UK

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Medication question?

Ammmi
Ammmi

Hi all, Im 33 and I was diagnosed with SLE and antiphospholipid syndrome around 24ish months ago and until 9 months ago my symptoms were manageable. I currently take Hydroxoxychloroquine and celecoxib. I’ve had around 9 months of pretty bad flair ups and yesterday the consultant has suggest I try either Methotrexate or Azathioprine. Has anyone got experience with either of these drugs? There’s lots of literature on both but sometimes it’s good to have first hand experience of someone going through the same thing. Thanks in advance.

4 Replies
oldestnewest

Hello Ammmi ,

Azathriopine has changed my life. It took a while to get into my system , a bit like hydroxychloroquine but what a difference it's made. I still have some symptoms but honestly I feel as if I have my life back.

I started with monthly blood checks after a couple of years I just go 2 monthly . This can be a pain at times but the medication does the job for me. As you know we are all different so it doesn't suit everyone. I can only speak for myself. I had no problems with side effects which for me is unusual. Let's not beat about the bush, no one wants to take any medication . I wouldn't even take paracetamol before being diagnosed with sle but I don't think I'd be here now with out azathriopine as this retched disease had affected my kidneys, lungs and brain.good luck with your journey . I wish all the best.

I have been taking methotrexate for several years - started on hydroxychloroquine but it didn't help - Metho has really controlled my Lupus well and I am dreading the day when they say I have to take a break from it !

MO3S50
MO3S50
in reply to HazelW

Hydroxychloroquine helped me at first. Now I feel like ..do I double a dose? I’m gaining weight on it too! Your suppose to lose? I know everyone is different ( it’s always been the case with me( what is this med you take? What about it do you like? Can you give me any info? I’m pretty good at grabbing up input quick. Been on lots of meds for most my Adult life.feel like my meds are not working at all anymore- been a year now with Brain fLares -Chest flare ups -Thyroid disease and stage 7 Fibro. Plus Menopause 😘🥀I am pretty tough ! Any advice on medications? Thanks!! Anyone jump in! I’m weaning off a lot of pain stuff!

Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi Ammmi,

Welcome to the LUPUS UK HealthUnlocked Community! We have a really supportive community here who are always ready to help in any way that they can.

We offer a free information pack which contains factsheets, guides, a list of helpline services and a list of LUPUS UK contacts who you can chat with over the telephone. If you would like to download or request a pack, please click here: lupusuk.org.uk/request-info...

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