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 MGīers who also canīt 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 As soon as it is withdrawn, the hormones that it replaced are not there.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.

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

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".