How quickly did all of you get sick with MG?

erinhermes · 09-23-2008, 10:38 PM

I've only been on Prednisone for 6 months now! It has made all the difference in the world! Granted, hairy moon face is not a good look for me - nor is the "wooky" hairy body I now have, but at least now I can work (most days) and can (again, most days) take care of my family

What dos your body do when you try and get off of the steroids? I kknow that the pressure in my eyes has gone up 10 points since I've started on them and my doc wans to check for glaucoma, but Im just so very thankful that it has allowed me to lead a somewhat normal life

! i'm so sorry to hear you've had so many problems - vent away whenever you feel like it! Talk to you soon!

Erin

Quote:

Originally Posted by GodDreamer2007

Cheryl ,You just vent away!!!! It's been a long time since all of us old board members have posted. How is your Mom?
Erin,
How long have you been on the Prednisone. I've been on Prednisone for well over 4 years now, and haven't had a day with out them. I want to get off them more than anything, but my body is giving me some difficulty when ever we try.
Becareful in watching your Adrenal Glands, look for Diabetes, Kidney problems, and of course Blood Pressure issues, and in me it may have caused Pulmonary Hypertension. Prednisone is a great med for immediate results, but there are so many other things that it can affect. Eye pressures, Cataracts...etc. I would give anything if I could get off of it. I'm a little puffy from it, but not too bad, lol...I have more important issues with my body to deal with. Like, I want to Stay awake, I'd like to live a long happy life.
Besides dealing with Myasthenia, I am a Narcoleptic, I have dysautonomia, and now Pulmonary Hypertension, not to mention all the little junk like, Raynauds, Diabetes, thickening of the left heart, 30 percent of my lungs weakened by MG....etc... And I'm only 44.
Wow, I guess I had to vent too.

Love Lizzie
P.S. Does Lois show up anymore?

Maxwell'sMom · 09-26-2008, 10:13 AM

Erin, Every single time they lower my Prednisone, my breathing tanks,and my adrenals don't want to wake up. I become very weak, and muscle cramps are beyond describable, the pain can be unbearable. I end up with a fever, and basically curl up and am so tired, I feel comatosed (sp?).
Yesterday, I met with a new Neuro who is working with my old neuro, and she is an Myasthenia Expert, she said that right now they don't dare lower my prednisone, but will reevaluate that in a couple of months. They finally got me somewhat stable, and want me that way for a while.(

um me too) I don't like choking everytime I eat. Eating can be a chore when choking all the time.
This is such a complicated disease.
Your eye pressure jumping up ten points, is a concern, make sure you have them check them often. You don't want to end up with Cataracts. I've been blessed in that way, mine have stayed right around 16-18. I was told that if you're going to have a problem with your eyes because of prednisone it will turn up with in the first few months of starting, so please be careful to get them check, I know you will, it's the "Mom" in me, if I don't say something, I'll be worrying about you during the night..sorry.

Love Lizzie

erinhermes · 09-26-2008, 11:52 AM

This is such a freaky disease! It effects EVERYONE in such different ways ; my breathing NEVER tanked until the very end, right b/4 my crisis........My main problems were extreme fatigue (very, very weak), double vision, etc, until the very end. Granted, I do have panic attacks that effect my breathing, but xanax really helps with that! I'm just sooooo very thankful that I can now swallow, eat, walk, work and take care of my family

! Does your neuro have any idea why he reduction of steroids effect you like that? I was up to 80 mg. a few months ago, now down to 20 daily. There are days when getting off the sofa is simply not in the cards, but other days I feel I can conquer the world - such is MG

. I am very worried about my eyes - cataracts/glaucoma are a real concern for me. I will call my doc and schedule a appt.for the next couple of days!

When you get some time, let me know how you are doing!

Take care!
Erin

Quote:

Originally Posted by GodDreamer2007

Erin, Every single time they lower my Prednisone, my breathing tanks,and my adrenals don't want to wake up. I become very weak, and muscle cramps are beyond describable, the pain can be unbearable. I end up with a fever, and basically curl up and am so tired, I feel comatosed (sp?).
Yesterday, I met with a new Neuro who is working with my old neuro, and she is an Myasthenia Expert, she said that right now they don't dare lower my prednisone, but will reevaluate that in a couple of months. They finally got me somewhat stable, and want me that way for a while.(

um me too) I don't like choking everytime I eat. Eating can be a chore when choking all the time.
This is such a complicated disease.
Your eye pressure jumping up ten points, is a concern, make sure you have them check them often. You don't want to end up with Cataracts. I've been blessed in that way, mine have stayed right around 16-18. I was told that if you're going to have a problem with your eyes because of prednisone it will turn up with in the first few months of starting, so please be careful to get them check, I know you will, it's the "Mom" in me, if I don't say something, I'll be worrying about you during the night..sorry.

Love Lizzie

Scots Kat · 09-26-2008, 03:16 PM

This is probably going to sound really stupid, but what do you mean by eye pressure? Is this yet another side effect of these crazy steriods!?! Should I be checking my eyes somehow?? I've been planing to get an eye check up soon - I've had the same prescription lenses for about 8 years and haven't been to see an eye doctor since I was diagnosed. So when I go should I ask about pressure too? Sorry about all the questions - man, just when you think you've got this thing figured out!!

Hugs to everyone!

neutro · 09-27-2008, 04:07 AM

Steroids can induce glaucoma , see http://vision.about.com/od/eyediseases/p/Glaucoma.htm
by increasing the eye inner pressure …
Maurice.

erinhermes · 09-27-2008, 06:52 PM

If I were you, I would definitely get my eyes checked......mine was just s fluke type situation, cuz' I have 20/10 vision, but need reading glasses since my eyes get so tired. That's when the doc discovered my eye pressure had gone up so many points - not a good sign. She also told me it was very common in people who take steroids for long periods of time (aren't we lucky?), so we ahould all get our eyes checked more often!

I go in on the 8th for the full workup...........wish me luck!

Scots Kat · 09-28-2008, 06:52 AM

Thanks Maurice and Erin!
I will definitely make an appointment to get my eyes checked out. I guess I've just been procrastinating! With everything else that has gone on in the past year the last think on my mind has been my vision.
Hope everyone had a great weekend. It's been beautiful here in Scotland - two sunny weekends in a row - I can hardly believe it!!
Take care,
~Kathy

GaBelle1 · 10-02-2008, 09:07 PM

Thanks for keeping my mom in your prayers. I know she'll appreciate it, and I most certainly do!

I'm on mestinon every 4 hours (120mg.), Cellcept, and IVIG every 4 weeks - in fact this Saturday. Since last month, I've had a home health nurse, and I love getting IVIG at home! So much more comfortable here at home!
I stay pretty busy so have to make sure that I make myself rest. I've definitlely gotten better at it over the last couple of years.
I've had to be on prednisone off and on but never for long periods. I wear contacts (very near-sighted.) My eyes are tired in the evenings, and then I deal with some blurry vision but that's about it. My eyelids droop more and more...that first week after IVIG, I look like I've an eyelift! It's wonderful!

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