Those who can´t take steroids, why?

[pingpongman]

My wife hates it. Every problem I have she blames Prednisone. Most of the time she is right. But right now I'm on 20mg and doing pretty good. As Dr Brooks explained to me "You are damned if you do but double damned if you don't" my choice.
Mike

[alice md]

Originally Posted by southblues

Wow. I am surprised that it makes you worse. It doesn't make sense that it would.

I have had them a few times, short term, and they helped me a lot. They totally take care of my voice issues.

I am just not willing to take them.

It actually does make sense.

A myopathic response to steroids is not very rare. It can be acute or on long term treatment. It is well recognized that in some MG patients there is significant worsening initially on steroids treatment.

Most MG patients have a good immunological response to steroids and therefore have improvement after this initial worsening. But, the combination of a myopathic response of the muscles with lack of response of the immune system= overall significant worsening.

This combination requires (off course) quite a bit of bad luck and a fairly ignorant neurologist.

So, fortunately, it is relatively rare.

[Quandry]

My reaction to Prednisone was strange. I became very paranoid and thought someone was trying to kill me. I think they call it "Prednisone Psychosis" - my heart also beat really fast. I think this is an uncommon reaction though. My doctor took me off immediately about ten years ago.

[StephC]

Alice

Lookng back what were the signs, symptoms (severity, timing of) that prednisone (i assume that is steriods you refer to?) caused your condition to worsen?

Do you think it is possible that it prevented condition from getting worse tham it would have otherwise?

Personally i can say that my condition although undiagnosed for years, progressively worsened at accelerating rate for about a year before diagnosis (7/12) and treatment.

I started prednisone in september and personally i think the only think it has done is make me fat and moody but i am assume the prednisone is slowing the rate of worsening.

Steph

Ps whatis myopathic response?

[AnnieB3]

Anacrusis, Is there a reason you're wondering why some people can't take steroids? Have you and your doctor discussed it? I thought you were doing relatively well lately.

I get nearly instant bradycardia, water weight gain (even with no or reduced salt) and my emotions are like, well, they're on steroids. It's not a good drug for me. Additionally, I tend to get infections easily while on them.

The thing is that while some symptoms, like adrenal insufficiency, are predictable, it's hard to say how you will respond to them.

Steph, This article explains steroid induced myopathy very well.

http://emedicine.medscape.com/article/313842-overview

Deciding on what drugs to take to help MG improve is not easy. It's a very personal choice and can be fraught with so many additional medical concerns. I know that steroids can help but I also know that they can cause cancers which can make MG look tame. A woman I worked with at the Lupus Foundation died not of lupus, which people can die of, but of a cancer she got from immunosuppression.

Think long and hard about a decision to take steroids. The impact on the immune system might not reverse itself after you are done taking them. There are some neuros who only like to use them for short bursts, like during an exacerbation or MG crisis.

Annie

[alice md]

Lookng back what were the signs, symptoms (severity, timing of) that prednisone (i assume that is steriods you refer to?) caused your condition to worsen?

My response to steroids was relatively rare.

It was a clear dose-response curve by all criteria fitting Koch's postulate to the tee. It has been described in the literature and had I not been overwhelmed by a very traumatic hospitalization I would have clearly figured it out long before and not kept on taking them for 3 months, before deciding that I start to decrease the dose as fast as is possible.

A while ago, I consulted my neurologist regarding a patient of mine who developed muscle weakness and voice changes every time he received steroids. He had no signs of weakness without steroids. My neurologist said that we have to consider the possibility that this patient has MG.
I nearly fell off my chair when he said that, because when I had a similar response during my hospitalization (in a large MG center) with a known MG, they had no clue of what was going on.

Do you think it is possible that it prevented condition from getting worse than it would have otherwise?

In my specific case, clearly not.

In general, medical decisions are not and should not be based on mystical assumptions.
Effective treatment can either lead to significant improvement (which is easily detectable) or can slow the progression. In order to decide that it slows the progression, one has to know the rate of progression without treatment.

MG is not a progressive disease with a predictable long term course. With or without treatment it has periods of improvement and periods of worsening, so it is very hard to assess response over a relatively short period.

In my opinion, taking treatment with significant long-term side effects, that leads to no discernible improvement, with the unproven assumption that it possibly slows the progression of the disease, makes no sense.

I have a patient who has some mild tremor. A neurologist he consulted diagnosed him with Parkinson's disease and started him on treatment for it. I am not a neurologist, but it was quite clear to me that this patient does not have PD. I asked him if he had any improvement with the treatment he was taking regularly for more than a year. he said that he didn't, but it stopped the progression of the disease. It took me a long time to convince him to try and stop the treatment. He was pleasantly surprised to find out that it made no difference.

Medicine is not an exact science, but it's reasoning is logical and follows simple rules. There is no reason to make it more complicated than it really is.

In my opinion, If after 5 months of treatment with prednisone you see no improvement, I think you need to review this with your neurologist.

[Anacrusis]

Originally Posted by AnnieB3

Anacrusis, Is there a reason you're wondering why some people can't take steroids? Have you and your doctor discussed it?
Annie

Thanks Annie.

A long time ago I had some symptoms like some of the ones described but from different medication.
And since that experience I just had the gut feeling that I would be one of the ones who would not be able to take them if I ever had to.
That is my only connection, projection or rather more simply a ´feeling´.......
At this moment in time I might discuss the weather with my doctor (which is actually pretty atrocious)
I am very interested in the answers to the questions I posed in this thread.
I am interested in the people who answer, their opinions, knowledge, experiences and how things eventually worked out for them.


Thanks everyone for the great replies,


Talk to you next year...

Anacrusis

[Alan53]

I have to be grateful for prednisone as my MG became severe I was also put on imuran but side effects were extreme so was left on 60mg preds for a year weight ballooned and eye pressure increased and had water retention had a few months without any preds then was on 30mg daily for 6 months for me being able to cope without preds for over a year and weight down is a great feeling.
What Mike says is so true
Alan

[Lesmom96]

I have been on an increasing dose of prednisone for 2 months. With each increase I have been feeling worse. I felt better with 10 mg, but have worsened a little with each increase. I am calling my Dr. Tomorrow to let her know that I'm tapering it back down. Maybe I will be less cranky and angry too

[lynned0]

Hi to everyone who posts on this site. I am a newbie to posting although I have been a 'watcher' for the last few months. Diagnosed seronegative in May this year, started as usual with mestinon which helped my back and arm muscles but not much else, so started prednisolone at the end on June - increasing dosage up to 70mg EOD which I am currently on. When I got to about 35 - 45 mg I thought there was an improvement especially in my unco-ordinated vision but then it seems to be down hill since then. I saw my neurologist in early December and gave him my diary to show how things were going which showed my breathing was deteriorating, my voice was disappearing everyday and my eyes were going again, so he introduced Imuran increasing weekly up to 175mg (currently on 100mg).

In the last 2 weeks I have got even worse, this morning I could barely breathe my eyes were all over the place. I couldn't stand up straight and I felt so fatigued I could barely get dressed. A few hours on I am feeling a little better and can see and type now. I have accepted all the side effects of prednisolone, some weight gain, spots, mood swings, always hungry/thirsty, round face, hair growth and worst of all the insomnia ( I only get max 3 hours sleep on the days I take pred) in the belief that I will improve, but it has become apparent that on the days I take pred it seems to 'shock' my system and make me particularly worse on those days. Reading your post Alice confirmed to me what I was already thinking, that I am worse now than before I started taking the pred and getting worse.

I have an appointment next week with my neurologist and I will be telling him I want to come off pred with a bit more confidence thanks to this site. Obviously I am still learning how to deal with this condition both mentally and physically - still got a long way to go !

Lynne