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 As soon as it is withdrawn, the hormones that it replaced are not there.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.

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

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.