I have been on steroids since the day I was diagnosed with ITP in 1983, with a only a few times of remission, or a choice to not use steroids. Once in 1984-86 remission and another 2 years in the mid 90's, when I just made a decision to not treat my ITP. I decided not to treat my ITP and just lived with counts below 10k. After about a year of no treatments, I noticed symptoms of fatigue and joint pain that would come and go and as time went on the symptoms became worse, until I finally saw a hematologist about my ITP and the other symptoms. He ran lupus tests and what had been lupus pretty much in remission, became lupus with a very high ANA and DsDNA. This necessitated a rheumatology follow up and began treatment for lupus and ITP. I've been on steroids pretty much non-stop since then, along with a host of other treatments.
I think by letting my lupus get so bad, I ended up with refractory to treatment lupus and ITP, progressing to APS, blood clots and lupus symptoms that ended up causing disability and I stopped working in 2003 due to the symptoms of fatigue and pain, along with the ITP, I just couldn't handle the stress of work anymore.
I think if I had kept on a low dose of prednisone, or other lupus drug, I might have avoided the higher doses of toxic drugs. I don't know for sure, who knows really. I guess since I developed more severe lupus after stopping all drugs, I think lupus got worse. Although, even after starting back on medications for lupus and ITP, I continued the downward spiral, so it could be I was always on this downward spiral and ITP diagnosed in 1983 was the first symptom. It could be it progressed faster because of the 2 years of no treatment.
Prior to stopping all treatments in the mid 90's, I had intermittent episodes of joint pain and fatigue, but they would last a few months and subside, so it was hard to put everything together. I had times where I'd get a facial rash and other rashes, but they also cleared up, despite sun exposure, so I could never figure out what the rashes were from, until I got the high ANA and DsDNA in the mid 90's. I guess I was just too busy to focus on the intermittent annoyances and ignored them, until they got constant and persistent. I'm not so sure ignoring the symptoms was a good idea and I probably should have been on plaquenil or other drug, such as low dose prednisone to ward off the severe flare I experienced.
I'm currently having a major problem with rashes and itching, which no one can seem to diagnose. My lupus tests are stable, with a negative ANA and DsDNA, but I continue to have a low level of RNP and Sm autoantibodies. I'm in remission, but with some lupus activity, because I still get joint pain and fatigue. 2 months ago I stopped plaquneil, because that can cause itching, I stopped other drugs too, because I was disparate for relief from the itching. It seemed at first I had some relief, but it flared again, so I think what probably happened if a cool down of the rash and itching from a round of higher dose steroids, which just knocked it back for a while. I don't think it was medications, so I've started back on all the medications I was on, along with 3 allergy meds to help manage the itching and rashes. Seems to be working, but I still flare every other day or so, where I'm miserably itching. I see an immunologist currently, because my rheumatologist left, but will follow up with a rheumatologist in a couple of weeks.
I'm not in the sun, as there isn't much sun in N.E. WI in winter and it's too cold to really be out in it when we do get sun. I also get rash and itching on unexposed areas of my skin, so it's some type of systemic autoimmune process, which I'm afraid might be lupus related.
I've started back on plaquenil, because I'm afraid of being off it. I've continued with 5-10mg of prednisone, but seriously thinking about upping it more, although I already have problems with osteoarthritis and bones are shot. I broke my sacral 2 years ago and that was with taking fosomax for 5 years prior. I'd like to avoid as much steroids as possible, but probably because I've been on them for so long and don't see any time soon getting off them completely. I manage them and take as few as possible, but that means I live in pain and with fatigue. Since I don't work, I can manage the stress pain and fatigue causes and I can rest when I need to. If I was working, there is no way I'd be able to manage my days without 10-20, pr even 30mg of prednisone.
My rheumatologist seemed ok with my managing steroids on my own and always wrote a script for prednisone. My hematologist was OK with it, but probably not as sure and understanding as the rheumatologist, so he left that up to me and my rheumatologist to manage.