Thank You - hearing that is like a breath of fresh air. Just wish I'd refused the drugs as they've caused so many problems - high blood pressure and high cholesterol so now I'm on statins for the cholesterol. Risk of adrenal insufficiency / adrenal crisis because of the steroid's impact so now I can't just stop them but have had to come off slowly to give the adrenal gland a chance to kick start itself. Thankfully, I'll be steroid free as of 4th July.
Then I will wean off the omeprazole as they also come with a risk of osteoperosis and from what I've read, weaning off can cause multiple difficulties - but at least I'm prepared. Then I come off the statins. I reckon this will take me to the end of the year so come the New Year I can make an informed decision about whether or not I continue to use the immunosuppressants. Side effects from these are pretty awful as well but I worry that where my body previously used to sort things out for itself, now I don't know if it will still have that capacity because of the harm these drugs will have done.
I was told I must not come off the steroids - I feel so much better now I am almost off - I'm like me again. My patience and feeling calm is back instead of me going off at the slightest thing and being worryingly erratic. My blood pressure is almost back to normal.
I was never told about any of the side effects despite my asking. I've never really needed any medication before so I was pretty clueless and quite frankly, frightened that they might try to force the drugs on me on the basis that they viewed it as 'in my best interests'. Once I get off these drugs I will never agree to using them again, even if this does mean my life ends up being a bit shorter - for the last 7 months I've had no quality of life, it's just been existing and trying to manage the body shakes when I woke up and during the day, muscle cramps, skin splitting at the slightest knock, nausea, constant headache, excessive thirst, intrusive thoughts, and on the high dose of steroid, only 3 hours sleep a night and every third night, no sleep at all, which would have taken its toll on my body. For me, I've lost just over half a year that I'll never get back - now I feel like I'm taking back control. I don't think I'll ever trust doctors again and I know I'll never seek medical help again.