Hi folks, I am not diagnosed yet but I have some blood markers (positive ENA and anti-RO) for Lupus or Sjogren's. (more symptoms of Lupus but playing the waiting game)
When I last saw the rheumatologist he gave me three options, do nothing, try a steroid injection, try hydroxychloroquine. He gave me a steroid shot last time and it made no real difference.
My main problem is overwhelming fatigue (like I'm up for an hour or two between naps and I can't think straight even then).
Does anyone have experience with this medicine and fatigue?
I've had hair loss in the past, does this medicine cause hair loss? (something I've heard about anti-malarials)
How does it affect your digestion? I'm already on treatment for acid-reflux and B12 injections for pernicious anemia so MORE gut issues I could do without.
Any other suggestions?
Thanks!
Written by
AmyG6500
To view profiles and participate in discussions please or .
Hi I was told yes you have lupus then I sore a different consultant and he says mctd Meds are the same as being treated for lupus and he told me it can take a long time to get a definite diagnosis of lupus steroid worked for me hydroxy dose not do much but with methatrexate big improvements best of luck
If you look on the "home" page of this site, you'll find a number of LupusUK leaflets you can download. They are all very good. The St Thomas' Lupus Trust is also a reliable source. Here is their page about anti-malarials like hydroxychloroquine lupus.org.uk/what-is-lupus/...
As you'll see, relief of both fatigue and joint soreness are among the main uses, and it's usually well tolerated. The main problems that get reported here are gastro-related ones. A lot of people seem to find it aggravates gastritis and gives you a grumbling gut for the first few weeks - and that was my experience. I took low dose lansoprazole and found that these symptoms soon disappeared - 2 years on, I have no trouble with it.
Hydroxy works well for fatigue and to be honest, I really haven't noticed any side effects from the drug and I take 400mg daily. Hope you find it works for you. Lupus and/or most connective tissue diseases take plenty of time for doctors to figure out but fortunately the treatment is all the same. Take care and all the best. X
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.