Venting Tired of taking steroids

[WhatDoesTheFoxSay?]

I've been on the corticosteroid prednisolone for three years since my diagnosis with lupus in 2019. When I was discharged from the hospital the starting dose was 25mg/day. Until the first quarter of last year, I managed to get my dose down to 1mg alternate day. Then a flare-up put an end to the good progress and I've had to backtrack to a higher dose. Today I received a call from my rheumatologist informing me that they found protein in my urine, a possible sign that my kidneys are not functioning properly (lupus is known to attack the kidneys). I was then asked to ramp up the dose to 20mg/day. Back to square one.

I feel trapped about the way I have been forced to live my life. There is no end in sight. No light at the end of the tunnel. While I do understand that steroids are a necessary evil when it comes to autoimmune disease, prolonged use can come with a plethora of worrisome side effects. It just feels wrong when (doctors) have to drug you up for you to be restored to some semblance of normalcy. I can't help but wonder if I'll become a walking medicine cabinet at some point.

 

[summers]

I've been injecting anabolics 2-7x per week for the last three years. May want to add some of these to you regimen to counteract the negatives of the pred. That shit is straight up poison.

Point is, whether medical or recreational, once you start steroids it's a life-long commitment. I knew that going in. The people who don't wind up totally fucked when their hormones are all out of whack and never get back to normal after stopping.

 

[TooConscious]

I can't get a full diagnosis other than thyroid autoimmune disease as my doctors are useless and life has cursed me not to recieve medical help. I have all the system some effect me worse than others but it's not a good do and I know how awful and hopeless it feels. I try to turn my meds into a meditative act. So I kind of take them automatically. I mean, imagine them as your elixir or somethibg, that's no more silly than anything else people lie to themselves about in this shitty life.

I've been injecting anabolics 2-7x per week for the last three years. May want to add some of these to you regimen to counteract the negatives of the pred. That shit is straight up poison.

Point is, whether medical or recreational, once you start steroids it's a life-long commitment. I knew that going in. The people who don't wind up totally fucked when their hormones are all out of whack and never get back to normal after stopping.

That's only for some people, the unlucky ones. Most people can restore near to prior hormone levels after a few months.

And its certainly not the case for things like corticosteroids.

 

[Angst Filled Fuck Up]

Prednisone has really helped with my occasional back spasm but that's only for a week or two here and there. I really feel for you, having lupus and having to be on it permanently.

It's a terrible feeling when you can't see an end to something medically and it's not just a course of medication anymore. I definitely sympathize because I think we all want to be at a baseline of being okay without pills.

Hopefully this is only a temporary increase and you can go back down soon.

 

[WhatDoesTheFoxSay?]

Point is, whether medical or recreational, once you start steroids it's a life-long commitment. I knew that going in. The people who don't wind up totally fucked when their hormones are all out of whack and never get back to normal after stopping.

I completely agree. Not just steroids but also other medications like antimalarials and immunosuppressants. People who discontinue them have been reported to experience withdrawal symptoms and diseases flare-ups. My rheumatologist wanted to get me started on Sulfasalazine last year but being unwilling, I refused. While she wasn't too thrilled about my decision, she nevertheless respected it.

I try to turn my meds into a meditative act. So I kind of take them automatically. I mean, imagine them as your elixir or somethibg, that's no more silly than anything else people lie to themselves about in this shitty life.

That's a good way to look at it. I do think that I'm privileged to live in a country with subsidised healthcare and ready access to medicines to manage my symptoms, even if my condition is deemed incurable. I try to remind myself that there are those less fortunate than I, and that the treatments available are the best possible ones at this time. It's just so frustrating when setbacks like these occur. Life is like snakes and ladders. When you're so close to reaching your goal, all of a sudden you are sent back to square one and have to start over.

Prednisone has really helped with my occasional back spasm but that's only for a week or two here and there. I really feel for you, having lupus and having to be on it permanently.

It's a terrible feeling when you can't see an end to something medically and it's not just a course of medication anymore. I definitely sympathize because I think we all want to be at a baseline of being okay without pills.

Hopefully this is only a temporary increase and you can go back down soon.

Thank you for your kind words. My rheumatologist did mention that some of her patients have successfully tapered off prednisolone so I hope such a thing can happen for me one day.

I'm glad prednisone relieved your symptoms. Prednisone/prednisolone does indeed provide effective pain relief—arthralgia in my case. However, my only gripe is that you can't just lower your dose as and when you like, without approval by your doctor following the necessary tests.