I have been following posts, but not making any recently. I was diagnosed with subacute cutaneous lupus over two years ago. I referred to a doctor who is 'interested' in skin conditions he is not a dermatologist (along with Wendy), this chap would come up with statements like 'it's your age' not very supporting or understanding as I don't think he knew anything about lupus. Out of frustration I asked my GP to re-refer me to rheumatology as I not only had SCLE, but secondary sjorgrens and raynauds and felt when I discussed my symptoms there was nothing he could do for me as I was not covered in a rash... Going back to rheumatology was not great as those who have followed Wendy's ongoing issues with them and this was the same rheumatologist. Wait and see I thought. In the end she took lots of tests and now seems to be focusing on my osteoporosis instead of the lupus. I did want an update on my bones, but I thought I would go back to the osteoporosis specialist in this NHS (who I seen a few years ago). Guess what she does both rheumatology and osteo in this county. My problem when asked about tiredness/fatigue, discussed my flares and high blood pressure and lots of other issues she never said anything, I assume we may pick it up after my blood tests. No. She gave me a leaflet on Azathioprine and one on Methotrexate and off I went.
So back my forum friends - I work full time and usually rest on the weekends when not feeling great (bed all day). Lately, I finding it hard to get up and just feeling fatigue, yawning, dragging and heading straight to bed when I get home, now this maybe the glorious light we are having, I hide as much as possible and work is UV protected. I was wondering if taking Azathiorprine or Methotrexate would help? I am already on hydroxychloroquine which has been good till now. Is it that I need a reality check ie follow the spoon theory and I am asking my body to much to work and still do things on the weekend? or at night? I read about fatigue in past posts and no clear answers other then caffeine can't hurt...I know I am tired as I am getting styes in my eye and sores in my mouth 'thanks sjorgrens' and also getting headaches.... I am really juggling and struggling would like to understand if there are any other options? ML