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Old 05-24-2018, 10:56 AM   #1
azwild
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Join Date: Jan 2011
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Default update

hi all , just an update have seen neurologist from barrow confirmed MG amazing experience saw 2 drs both spent two hours examining me and discussing treatment options and the drawbacks of each , also discussed possible thymectomy as a future possible treatment down the road , right now we are going to keep on the pyridostigmine 60 mg 3 x a day and they also added prednisone up the dose will be upped to 60 mg per day ,in the meantime we started the insurance paperwork for approval for IVIG treatment , and i think Imuran possibly , tough call with the prednisone as i'm diabetic just called my endo to keep him updated , was in the ER two days ago as i was experiencing shortness of breath ,difficulty swallowing rather be home drs said if that happens again just go to the er and they will admit me and get it sorted out, once again thanks you guys rock ,dave
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Old 05-27-2018, 12:51 AM   #2
Nac Mac Feegle
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Default That's good news

Once you have a diagnosis, the treatment can start.

And when someone asks something like "Who diagnosed you?" or "Where did you get that?" or some such, an answer of Barrow Neurological seems to shut them up promptly.

I got that a few times, but "Barrow Neurological Institute" stops the questions and weaseling right then.

I will note that while I was in there for plasmapharesis, there were a lot of groups through my room; sort of a "Look what we have here!!!" type thing.

As my Neuro said one day, "It's usually not considered Good to be medically interesting."

As difficult as MG is to diagnose, I think that a 'live' example would be instructive. I'll take the looking, if it helps someone down the road.
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Old 05-27-2018, 05:42 PM   #3
AnnieB3
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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
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Old 05-29-2018, 12:43 AM   #4
azwild
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Posts: 12
Default thank you annieb3

Quote:
Originally Posted by AnnieB3 View Post
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
thanks again powerful post , i appreciate your input, i didnt feel shortchanged at my drs appt we also discussed your valid treatments options/points. i call it perfect world treatment yes steroids would not be a part of my regimen , and many other options carry risks that can be detrimental to my other issues , lungs , blood, endocrine , cardio etc. with my blood disorder the hardest part was the watch and wait concept. my first bone marrow biopsy was over 20 years ago as well as lung biopsy as i had a spot on lung , life went on raised kids never even thought about any of this stuff , had an adrenal tumor discovered in 2015 that raised heck with my body, crazy blood pressure spikes and heart rates which led to numerous hospitalizations prior to discovery and removal, what an ordeal finding a qualified surgeon during my quest i've ran into some not so knowledgeable doctors whose egos couldn't compensate for their inexperience , as this could of been a really dangerous operation i was in icu for a week , with my valley fever i was really sick still being treated and possibly will also need to be on fluconizole for the rest of my life ,i still have a lung growth that needs to be addressed another ct scan scheduled for early june , for that i'm being treated by an infectious disease dr/pulmonologist. i also have labs taken quite frequently , i'm okay don't feel sick just these crazy symptoms with mg , annie your compassion truly is appreciated , i'm truly blessed and glad i found this support group thanks , sorry if i started to ramble ,dave
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Old 05-29-2018, 06:06 AM   #5
azwild
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Default thanks

your post made me think ,dig a little deeper into my medications i'm on 400 mg of fluconizole and the statin i was on was counterindicated so we stopped that and started rosuvastatin upon further reading looks like possible causation from the rosuvastatin and MG as per STATINS MAY AGGRAVATE MYASTHENIA GRAVIS definately worth looking into thanks dave
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Old 06-02-2018, 12:53 AM   #6
AnnieB3
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Dave, Do you have high cholesterol or just mildly elevated levels? Statins are not great drugs, unless you have to take them due to cholesterol in the 600s! One type of statin has caused "wild neurons" to develop in the body. Mrs. D. had posted a great article on that, but I can't find it.

Yes, they can make MG worse, as can many other drugs such as Neurontin.

Go to Home to learn more about other drugs that might aggravate MG.

I'm glad you're learning more about MG. This can be a tough disease to cope with.

Annie
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