hydroxychloroquine for Sjorens

[GardenGladness23]

Hi all, I have recently (finally) been diagnosed with Sjorens and Sub cutaneous lupus. My main unmanageable symptoms currently are fatigue as in sleepy tiredness fatigue, brain fog and muscle tiredness and aches / feeling slow and creaky in my body.

I have been prescribed hydroxychloroquine, what are people's experiences of this?

Currently I am put off because I am reading that it can effect your white blood cell count and make you more susceptible to illness. I already feel like I have a rubbish immune system full stop and currently have a 6 yo who thanks to lockdowns still hasn't stopped bringing home a new virus every 4-6 weeks, which when I get I struggle to shake.

I take it for arthritis. It is an immunosuppressant, but I've not got a medical degree, so I'll take it.

I've taken HCQ for over 14 years and it's really fine! WBC are usually in the lower end of the normal or just below but there was virtually no difference to my immunity. I started taking it well before having a baby and was only ill 1 or 2 times per year with a standard cold. After having a kid I was ill much more often but that was almost certainly related to all the nursery bugs. DH doesn't take HCQ and was ill just as often as I was.

The biggest risk is potential eye damage but that usually only happens after 5 years and dose dependent. You will need regular eye checks as it can affect colour perception. However the chances of that are still very small. The benefits of getting your symptoms under control far, far outweigh the risks.

When starting HCQ you can taper your dose for a few weeks (take 1/4 or 1/2 dose and build up). My rheumatologist suggested this and I had absolutely zero side effects.

I have Sjogrens and lupus and other things and I tried it but it just gave me a lot of upset stomachs and heart palpitations- it didn’t actually do anything to help with any of the symptoms I had / have so had to stop taking it. But I think I was unlucky because I’m a member of the Sjogrens support group on Facebook (join it, very helpful) and it seems lots of people find it beneficial.

Group link here -

www.facebook.com/share/g/18sJ5pDjHG/?mibextid=wwXIfr