Those who can´t take steroids, why?
 

Hello...

I was just wondering the other day.....

Those of you who can not take steroids, what is the reason - and is the reason quite similar with all who can not tolerate them?

Are the side effects much greater than the benefits?
Are you generally sensitive to medications?
Are you prone to developing drug induced diabetes?
Do you have a similar blood type, MG type, or other common factor with other MG´ers who also can´t take them?

Do you have any thoughts and what does your neuro say about this?

Thanks,


Anacrusis

I have only taken steroids a few times. For short term use, they make me nervous. (Not afraid of the drug, actually nervous as a side effect.)

Steroids have serious side effects for all mammals. I have the most experience using them in dogs. The dogs tend to gain weight. They urinate excessively. They may become diabetic. I had one patient that totally went blind while taking prednisone. As soon as she quit taking it, her vision returned. I can't explain that. The owner was unwilling to put her back on the drug even though she had lupus. The drug may have been "falsely accused" in this case. Whether dogs experience elevated blood pressure is hard to say because there are no reliable values for dogs. (How do you compare a poodle to a great dane?) I have seen several die of liver failure after several years of prednisone use. Laboratory reports would come back saying "steroid hepatopathy". One dog died of cancer that could have been related to steroid use.

The biggest problem has come from the pet owner suddenly withdrawing the drug. The dog will be fine one day. Then shortly (a day or two? -- hard to say since this is always coming from somebody that is irresponsible) after they stop giving the drug, the dog will crash. They will be comatose and almost dead. If you get to the dog on time and make a good diagnosis, you can turn things around and save them.

What happens is that prednisone suppresses the normal adrenal gland. As soon as it is withdrawn, the hormones that it replaced are not there. The dog (or human) then starts to lose huge quantities of sodium and water. They lose so much fluid that their blood pressure drops and they will die really fast. If you figure out what it is and put them on IV saline and give them an IV steroid, they often turn right around.

It takes about 3 months of continual use to get this physiologically addicted to the drug. The addiction comes not through causing a craving, but through suppression of the adrenal gland.

I don't want to take them unless I have to. All that horror stuff being said, I have seen dogs that would have died without steroids live normal lives for years on them. You have to weigh risk and benefit.

When I was on 60mg I almost lost my ability to walk. I went to rehab but they couldn't help. I was almost to the point of ordering a wheelchair. Besides that I had huge weight gain. Swelling of ankles, huge face and neck. I went to see my neuro-muscular Dr and he said I had to get off Prednisone as fast as possible. He said high doses of prednisone had adverse effect on some people and I was one of those. Once we started tapering I immediately started getting better. I am down to 20mg now but both of my dr's do not want to change my meds because I am currently doing so well. The 20mg currently is not bothering me.
Mike

I have only tried three days of steriods ever in my whole life.. but it was a few months ago.. They started me on 60mg, which I now hear is a no no in neuromuscular disorders (this was my internal med dr that did it).. but I felt weaker, heart racing, sweating like crazy.. and I just flat out felt like I was gonna kill over haha.. After three days, that was all i could tolerate... I'm sure if i started at 10mg or so and tapered up it might have been a different story..

Steroids changed my MG from moderate-severe to very severe.

I went from being able to work part time to being nearly bed-ridden and requiring respiratory support most of the day.

Four years later, I haven't yet recovered to what I was prior to this treatment.

I know I was stupid, but I trusted my neurologist at that time that my condition deteriorated despite the steroids and not because of them. (even though every muscle in my body told me differently).

A smart and wonderful nurse during my hospitalization told me that I am a strong minded, bright physician and should trust myself and what I am experiencing.
It took me more than three month to understand that I should follow her excellent advise.

I wrongly thought that if that neurologist was brilliant enough to diagnose my obscure illness, , he is also capable of treating me properly and I should trust him more than I trust myself.

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.

Well my doctor told me they are like a miracle drug to some and very dangerous to others.
Mike

You have a very smart doctor.

This is Dr Brooks in Charlotte, NC. He went to school with Dr Donald Sanders. At first he was a jerk but now that I know how to deal with him it is a lot easier to see him. He gives the best exam each visit that you can imagine, normally 45 min to an hour exam. He is head of the ALS Center. He confers with my local neuro about my case. They work well together.
Mike

Hi Anacrusis
 

I had to take prednisone for a number of years while involved with a trial study. I didn't just get nervous, I felt sick, could not sleep, got depressed, and outright became a witch. Crabby is an understatemet. Also had to take it about three years ago for "shock" where your face, lips, tounge swell. Jittery was an understatement. Once there therapy was over, I was OK again. If I get stung by a bee, fire ant, wasp etc. I face the prednisone again, wonderful....hum bug. I have auto immune problems, not MG.

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

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.

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.

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?

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

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.

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.

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...:holysheep:

Anacrusis

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:hug:

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:)

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

If a drug makes me worse, I am not going to take it. Over the years, I have had so many weird diagnosis for weird diseases that I actually didn't have, that I have decided that I am going to have the final say until I am too old and senile to do otherwise.

So if the prednisone makes you worse, I would not take it if it were me. Please don't suddenly stop taking it though. It can take months to safely wean off of it.

In my experience with treating dogs, I have found that the every other day treatment makes for a MUCH safer time during drug withdrawal as opposed to daily use. The idea is that your adrenal gland has one day to work between dosages and it doesn't get so "lazy".

In a nutshell, what would a really outstanding neurologist have done differently in your situation, Alice?

Hi to you to! :Wave-Hello:
Not being able to dress and being totally out of breath pulling a sweater over my head is something I remember also...Good luck at the neuros :)

Southblues,

Your connecting and transferring of ideas via your work with animals is quite fascinating!!! When I first was googling my way around trying to make sense of my symptoms I would often end up reading about dogs & MG and horses (if I remember correctly) And to be honest, for some reason or other, it seemed that that info was much clearer and hit home and I sometimes picked up some extremely useful and well written info where I otherwise I might not have :)


Anacrusis

I would say-a reasonable (not outstanding) physician would have A. put a close eye on a patient who keeps on saying that she is doing worse (instead of better) with treatment. B. trust what she says unless they have very good and proven reasons not to. C. make sure that even if they are not able to be physically present they receive accurate data (without interpretations) from the most competent and experienced residents and nurses. D. definitely come in when they are called and not trust a resident who tells them that there is nothing seriously wrong when they receive very different information from a close and reliable relative. E. Not discharged a patient who has episodes of un-measurable vital capacity and requires frequent respiratory support without a review of her condition with a respiratory physician. F. Definitely not write a letter to her GP saying that she is in remission and does not require any medical assistance or intervention when discharging her in such a condition. G. Definitely not put a big "?!" on results of supposedly accurate tests that show that he is seriously wrong in his clinical assessment.

I think (and also told him) that what he and his team did was on the verge of malpractice. I don't think the limitations of neurology justify this. In fact I think that such an inaccurate field requires that you be much more cautious and humble in front of your patients. If you have no clue of how to assess respiratory insufficiency and have no understanding of the proper interpretation of respiratory tests, how can you take upon yourself to decide that there is nothing physically wrong with your patient?

Hi Alice MD
 

Your post was one of the best I have read here on NT. If only physicians would really pay attention, and or admit when they don't know something. thank you for this response. ginnie

It is apparently hard to sue a doctor if there is not a clear, easy way to diagnose a condition. I had a doctor almost kill me, and the one lawyer that I talked to said that you would have to have absolute proof that what he did caused the problems, not just that he was an incompetent clown.

Exactly........:)

Thanks so much for sharing.

Anacrusis

Steroids exacerbate my MG, as they do for a certain percentage of MG'ers.

I asked a respiratory therapist the other day what a normal NIF was. She was obviously completely clueless, and said "I am not sure...yours is 55 and that's fine. We're used to seeing people who are like 10 around here." I was thinking, really? Because I would think if they were at 10 they would probably be on a vent. And since it took them half a day to dig out the NIF since they rarely use it here...I doubt they are used to seeing 10's around here! Get a clue!