Lupus - interested in other's experiences.

[JanW]

I have been recently diagnosed with Lupus and have been put on 400mg Hydroxychloroquine by my rhumologist.

The symptoms that got me to the point of diagnosis were skin rashes basically all over arms, knees, throat neck, scalp etc and bad fatigue which is still a constant.

I can't see a lot of difference to how I was before hydroxy apart from 'maybe' a bit more energy.

The downside for me, still the constant fatigue, and having menier's disease spring up though before no dizziness for the past 2 years I have now experiences three really back attacks of dizziness and sickness so bad the one hubby wanted to ring a paramedic - so basically a lot more dizziness. I have also found my right eye watering a lot when I am out in any sort of weather wind or sun and have bought some brown tinted prescription sunglasses. A litle weight gain, and if I am honest lack of recall memory a bit.

From reviews  I have been reading online hydroxy seems to do well for people with Rhumatoid arthritis but not so good with lupus, and frankly I agree with that - a touch of what's the point.

Would be really interested to hear other people's stories from those with lupus - or those who know someone, and the moderators who are always great.

[Clutter]

JanW,

HealthUnlocked have several fora dedicated to Lupus healthunlocked.com/find

[JanW in reply to Clutter]

Thanks clutter just joined.

[Hobnobbing]

Lupus UK has a forum on health unlocked.  You might find it takes several months for the hydroxychloriquine to have any effect but it is one of the easiest drugs to take for Lupus and does work well at dampening down inflammation and joint pains as well as preventing flares.  You should also wear factor 50 sunblock if you are light or sunsensitive.  Make sure you have your eyes checked at the start of treatment and then every year after that as it can build up in your retina.

[JanW]

Thanks hobnobbing