Prednisone is the only thing that makes me sane

I am seeing a neurologist soon but wanted to see if there's anybody out there who has similar symptoms to me. I've tried googling it, and it seems like there are plenty of people who turn into complete psychos when they take prednisone, but nobody else who is ONLY sane when on prednisone.

I lived most of my life completely out of my mind. Everybody just thought I had a mental illness and that I needed to get over myself and pull it together, or just didn't want anything to do with me. I went to therapy, I tried many different antidepressants, anti anxiety drugs, and even a few antipsychotics. Nothing worked for me.

But then I had a blood test that said I make antibodies against striated muscle. My doctor put me on prednisone. BOOM. Magic. All of a sudden for the first time in my life, I wasn't anxious and in pain and suicidal and irritable and emotionally unstable and seeing stuff that wasn't there. For the first time in my life my mind was quiet. I have I've been on a daily dose of prednisone for over a year now and it works. My question is WHY????

Psychiatric drugs have not worked for me. Therapy has not worked for me. Weed does not work for me. Meditation does not work for me. Steroids work for me. If i just had a mental illness, this would not make sense. I want to know what I have. I want to know what could be wrong with my brain that it doesn't work unless I'm on prednisone. Since I have to self regulate my dosage, sometimes I get it wrong and I relapse into being crazy, and it's like being in a nightmare that I can't wake up from. And that used to be my life all the time.

I'm not perfectly healthy now but I am a totally different person on prednisone. I still have milder forms of my symptoms on steroids if I get extremely stressed. I used to have migraines and joint pain all the time but now I have less of that. I used to be chronically constipated and unable to digest anything but that's better now. Before the prednisone I also used to get these "seizure like episodes" where I'd get really hot and feel like my eyes were moving really fast and get a horrible stabbing pain in the front of my forehead, then lose consciousness, then be really confused and groggy and sometimes have memory problems. I still have some cognitive issues like I get lost all the time super easily and can't follow driving directions AT ALL, and I really really struggle in school with course loads that most people consider normal.

Has any body else had or heard of anything like this?

I think you might need to get a second medical opinion as most of us here aren't doctors. My understanding is that prednisone is not a safe drug to take long term, but that's something you have to discuss with your doctor about how to manage your condition. Good luck

I undestand. I am on a low dose. My doctor has gone over the risks. But for me this is not optional. Maybe because I'm on it, long term I might get osteoporosis or liver damage. But OFF of it I lose my mind so badly that I get fired from every job I have, I lose all my friends, I end up homeless, and I attempt suicide. All of those things have happened to me. Chemotherapy is not safe either, but if it's necessary to save your life, that's what the doctor prescribes for you.

That being said, I am hoping if I could find out what I could possibly have that responds to an anti-inflammatory drug (some sort of swelling in my brain? Antibodies getting past my blood-brain barrier?) there's a possibility the doctor could find me a safer treatment long term. I am going to a new neurologist in a month, but I just wanted to put it out there and see if anybody has had a similar experience, because I haven't been able to find anybody online who says they are also completely out of their mind unless they take steroids.

This is very interesting. Doctors are not equipped to deal with something unusual like this and hopefully you can get your neurologist to keep researching your problem. I have some experience with prednisone and one of the biggest effects it has is to reduce swelling throughout your body. I just wonder whether you have infected arteries which might have reduced blood flow to your brain. The prednisone keeps the infection low and the arteries open. This is something you may have to see a cardiologist about. Also prednisone increases your metabolism like a stimulant. It could be acting like Ritalin which affects chemicals in the brain to focus concentration.

You've hit on something here. Keep pushing these doctors to figure out something. Make sure they do ultrasounds of your carotid artery in your neck and the arteries in your heart and kidneys. Have them look for a biological reason for what is happening to you. Good luck.

It is a little strange. Have you asked your Doctor if it could be a placebo effect?

It sounds like you finally got a good workup and treatment. Many autoimmune diseases affect the entire body, including various neurological symptoms. Make sure you understand what you have, read up on it and get regular follow up. Predinsone is not without side effects so be aware of them also and take the correct doses. Also, just because your autoimmune disease is being managed it doesn't mean other things can't also coexist such as mood disorders, etc.

I had a blood test that said I make antibodies against striated muscle. My doctor put me on prednisone.

https://www.hindawi.com/journals/ad/2011/740583/

I would read the treatment section of this peer reviewed journal. It may have some other suggestions for you to bring up at your next appointment.

It can't be the placebo effect because I have tried literally dozens of different medications. If it were placebo effect why would it ONLY work with steroids and not the other medications that I had a lot more reason to expect to work? Besides, before I was on prednisone I had been crazy my whole life. That was normal to me. I didn't have any idea what it would be like to be able to actually think clearly. Taking it for the first time was like waking up from a nightmare that I'd been trapped in my entire life.

I didn't get a good work up because the doctors I've seen have not actually been able to diagnose me with anything or tell me what's wrong. They also can't tell me the correct dose to take, which is part of the problem. Basically I've gotten the response that they don't know what's wrong with me but they found some antibodies so here's steroids to throw at the problem. Nobody expected it to make me less crazy. And also prednisone would not affect a mood disorder, antidepressants and antianxiety pills would, but those had no affect on me or made me worse.

https://www.hindawi.com/journals/ad/2011/740583/

 

I would read the treatment section of this peer reviewed journal. It may have some other suggestions for you to bring up at your next appointment.

Thank you for the article! Those are the antibodies I have! I don't know if I actually have MG but I will ask about that. I've always had muscle weakness and fatigue but have found that a rigorous exercise regime helps. For me exercising every day is not optional, it's "use it or lose it."

It seems you need to research your illness and medication as well as have some frank discussions with your physicians. Prednisone is never just thrown out there in random doses for no reason hoping it will treat anything. Better information will help you through this and enable you to talk to your physicians regarding your health in an accurate manner

also prednisone would not affect a mood disorder, antidepressants and antianxiety pills would, but those had no affect on me or made me worse.

From the US National Library of Medicine National Institutes of Health:

Background: Physicians in the United States write approximately 10 million new prescriptions for oral corticosteroids each year. Common side effects of corticosteroids include weight gain, osteoporosis, and diabetes mellitus. This article reviews the available literature on psychiatric and cognitive changes during corticosteroid therapy.

 

Method: A search of the MEDLINE and psycINFO databases was conducted to find clinically relevant articles on psychiatric and cognitive side effects with corticosteroids using search terms including corticosteroid, prednisone, mania, depression, psychosis, mood, memory, and cognition.

 

Results: Symptoms of hypomania, mania, depression, and psychosis occur during corticosteroid therapy as do cognitive changes, particularly deficits in verbal or declarative memory. Psychiatric symptoms appear to be dose-dependent and generally occur during the first few weeks of therapy. Patients who must remain on corticosteroids may benefit from pharmacotherapeutic approaches, such as lithium and the new antipsychotic medications.

 

Conclusion: Mood and cognitive changes with corticosteroids appear to be common but generally mild and reversible side effects. More studies are needed to determine effective treatment for steroid-induced psychiatric disorders.

It seems you need to research your illness and medication as well as have some frank discussions with your physicians. Prednisone is never just thrown out there in random doses for no reason hoping it will treat anything. Better information will help you through this and enable you to talk to your physicians regarding your health in an accurate manner

From the US National Library of Medicine National Institutes of Health:

It feels like you didn't actually read anything I wrote...I know other people have negative cognitive changes on steroids. I'm trying to find out if there's anybody else out there who is ONLY SANE on prednisone. The cognitive and other mental issues I have off prednisone are so bad that they are unlivable. I literally feel like I was a walking dead person before and I came alive for the first time when I started the steroids. Nobody expected that. And it's certainly worst to be absolutely and totally out of my mind off of prednisone than it is to be a sane person who might get osteoporosis or other physical problems. Until you've lived as a crazy person on the street hallucinating and wanting to kill yourself every second of the day, you have no idea what I've been through.

Also I am trying to research this issue but haven't had much luck. Obviously I know it's autoimmune because that's what the doctor who proscribed my steroids said, but they honestly don't know any more than that and couldn't tell me anything more specific. I'm about to start seeing a new neurologist so I'm trying to gather new ideas, especially about the mental component of this.