How many others choose not to go the route of dai... - LUPUS UK
How many others choose not to go the route of daily steroid use with multi organ lupus
Km on steroids didn't realise I had a choice than take them.
Hi was diagnosed 20odd years ago after 9 years of having lots of tests and and one point they were convinced it was MS ,but eventually lupus was confirmed and it was suggested that I go on a course of steroids Now back then I had never heard of Lupus but had heard of bad reactions to steroids So after research I was put on hydroxychloroquine anti inflammotories painkillers and aspirin I did an elimination diet and found the foods that exacerbated MY symptoms . I have had lots of problems and flares through the years but I took drastic steps to manage my illness ie got out of a stressful marriage he couldn't accept or understand the fluctuating disease and as stress is also a big NONO in lupus I moved on . Now I am on steroids and methotrexate plus other meds but this was a no choice situation if I didn't take them I would go blind So for me it became necessary to take them Everyone is different and certainly I have found I feel so much better on these tablets Maybe I should have taken them sooner instead of struggling with pain flares etc With everything we have to make an informed decision before just accepting what the docs want us to put in our bodies Take care
I too tried to avoid steroids, but eventually gave in. Now (5 1/2 years later) I am not taking the steroids anymore but taking mycophenolate and hydroxychloroquine. Still not what I would call 'better' but by comparison with before I am OK.
Steroids are helpful in the short term but in the longer term they do bad things to the body and mind.
Hi every time I try to come off steroids I find that my symptoms get a lot worse and I have been hospitalised sometimes when I have been trying to go without so am now on a low dose alone with weekly methotrexate and folic acid and am the best I have been for a very long time. I doo hwever take calcium and vitamin D suppliments as recommended by my docs and my latest bone scan showed surprisingly good results so the steroids have done me quite a lot of good. Sometimes it seems these things get a label and it sticks when they really can do us quite a lot of good, I tend to shut my ears to effects things have on others and try them for myself before making judgement and I am so glad I did.
Good luck whatever you decide I hope you benefit from it
Madmagz x
my consultant has always tried to treat me "steroid sparing for as long as possible" hence I have not yet needed steroids (but I would take them if I thought I needed them) Instead Im on hydroxychloroquine and various pain killers
