Dave, I'm glad you had such a good appt.

I'm not okay with staying quiet on a few things. I've seen far too many people I know have their lives taken over by steroids. And a few have their lives just taken from them.

You not only have diabetes, but cancer. I'm honestly appalled by the fact that they think suppressing the immune system is the right thing to do. Doctors might explain side effects, but if they haven't lived those effects, they don't have a clue what that really means. Drugs are the only things they can do to help patients. But that doesn't mean taking drugs is always the right choice.

Sure, MG can cause someone's life to be at risk as well. But there is always IVIG or plasmapheresis.

Due to diabetes, you are open to having venous insufficiency and heart disease. Steroids will supercharge both of those risks. Diabetes can become brittle, and the management of it can prove to be quite difficult.

You are also a high stroke risk. If a cardiologist hasn't thoroughly examined your cardiac health, they should have before the neurologist gave you steroids. Diabetes and apnea (MG can co-exist with apnea) can leave someone at risk for AFib. That alone can cause a stroke.

The drugs they put someone on to manage AFib, for example, can cause even more health issues.

Steroids can cause edema, which makes things such as lower limb infections and cellulitis a real possibility. That leads to compression stockings (especially if you are on a plane). Infections are varied, and hard to eradicate.

Regular basic chemistry panels often have to be done, to check the balance of electrolytes and fluid levels. Any imbalance in those can be serious (such as potassium).

Steroids can also cause high blood pressure. That condition is very hard on the kidneys and can cause kidney failure. That can lead to dialysis or other issues such as kidney infections.

There's so much more that can very realistically go wrong while on steroids. Many MG experts are now staying away from that drug, and only use IV Solu-Medrol (IV steroids) during a crisis. Every treatment has risks. But steroids are the gift that keeps on giving. So while MG might be under control with steroids, other disease states might become worse or new ones can emerge.

A patient also has to think of taking a drug in terms of temporary issues, such as infection, or more permanent or irreversible ones, such as kidney failure. All of that should be thoroughly thought of before taking a drug.

Did the doctors say that you should keep salt out of your diet while on steroids? Did they say to make sure you have enough good omega 3's in your diet to keep the gel coating of your stomach healthy? Steroids are antiprostaglandins, and they reduce the good prostaglandins that help with pain management, that gel coating of the stomach, and so much more. Did they say to take vitamin D and calcium (without magnesium) while on steroids? Even then, the bones might become brittle and you can have fractures or breaks. The spine might compress as well, causing nerve pain (which diabetes can also cause). If the neurologists did not comment on any of the above, that discussion was not thorough.

What you do with your life is none of my business. But I do feel a responsibility, knowing what I know, to thoroughly explain what can happen on steroids. I have lost many friends directly due to that drug, and it's secondary effects. Yes, it can also save people's lives. Steroids pulled me out of an MG crisis. I know after taking it, that I can't have it again (too many stressors on my body).

I hope everything goes well, and that you avoid a crisis. I hope you will be okay on the regimen that you and your doctors came up with. I think that patients both need and deserve to be fully informed of potential issues with a drug. And patients should also know that government and medical bodies, such as the CDC and AMA, come up with protocols that doctors follow, which might have nothing to do with a specific patient's needs.

MG: First, Mestinon. Then steroids. Then another immunosuppressant. Then IVIG. Or plasmapheresis. Then Rituxan. Maybe Prograf or another immune drug. Then maybe stem cell transplant. Though there are doctors who make exceptions, that's the algorithm for treating MG. (Plus thymectomy for some of us.) That also goes from the least expensive options to the most expensive ones.

I fully support what anyone decides to do with their life. Again, each of us has to follow our own path. No one else can make those decisions for us. But I do believe in being fully informed before making a medial decision that could adversely affect one's life. I say all of this with the upmost respect.


Annie