Hi,
I was diagnosed with SLE 5 years ago, and have had a couple of flares, however nothing too serious, so had previously coped without being on any medicine at all, or occasionally a 4/5 month stint on plaquenil.
Unfortunately in October last year, my lupus started flaring and i was put in Azathiprine, however i didn't realise how bad things were so after a couple of weeks on the meds i stopped taking them - i didn't like the side affects i was getting - dizziness, nausea, feeling like i was going to black out.
In January this year, i was hospitalised for extreme chest pains, was put on a high dose of steroids and plaquenil 400mg a day and told it was pleurisy. I managed to wean myself off of the steroids and kept on the plaqueil. I then was hospitalised again in March due to the same thing. I was put on 8 x 5mg steroids a day, 400mg of plaquenil and advised to start on mycophenalate 4 tablets a day increasing to 6 as we are simply unable to get the lupus under control- whilst on these tablets i managed to wean myself of the presnisolone.
Whilst on Mycophenalate i had a sore stomach constantly, numerous infections - one a week, hair loss, anxiety and generally felt upset and down. I stopped taking these tablets 6 weeks ago, as although the joint paint and chest pains had stopped, i felt the side effects i was having outweighed the benefits. Over the last week the joint pains are back, and i have a niggling pain in my chest so i know that the pleurisy is on its way back - this is obviously because the mycophenalate is nearly out of my system.
I have spoken to my consultant who wants me back on mycophenalate but i am not willing to go back on this drug, as it was ruining my life. I have been told the alternative is Azathioprine again, however i am sceptical as i am scared about the side affects and recurrent infections. Has anyone had hair loss on this drug? I am not very tolerant of medicines they seem to affect my stomach quite a bit. How long until people have seen results on this drug?
I feel like i have hit a brick wall as unable to get the lupus under control with steroids and plaquenil alone, so need something stronger, but the side affects i experience on the immunosuppressants are a big problem for me. Are there any alternative treatment plans people have tried?
I do not have kidney or liver involvement (thankfully) my main symptoms are rash on elbows (occasionally) severe joints pain moving round the body, and chest pain.
Thanks in advance!