[tysondouglass]

Hey guys, so just got to Maine last night. The flight wasnt an issue yet, now im feeling it.

I just got up from a nap. I feel very light headed and just overall very tired, and when coming up the stairs my heartbeat goes up very high. I was playing with my cousins (aka ran around the house playing tag for 2 minutes) and could hardly breathe after that, so im not sure what i should do.

I know doing too much could put me back into Crisis, yet, i thought the prednisone would be helping. For today my eye was ALL the way closed.

I didnt know that i was on 80mg of prednisone, which was really high. I was supposed to take 3 a day, not 4. I was getting nose bleeds, and i suppose thats why.


Well, im just checking in with you guys. I thought pred. worked right off. Does it not?

Im drinking alot more water than before.

Ill be careful and hopefully not end up in the hospital.


Hope your all feeling well.

[Juanitad]

Hi Tyson - Prednisone takes about 48 hours to get in your system. However, it can elevate your blood sugars like a diabetic which can cause the extreme thirst. Do you have any way to check your blood sugar? If you don't have a test meter, do you have a relative who has one who can test it for you? You really need to check the levels - I might even try an ER if I couldn't get it any other way. If it is high, you need to be treated until you can lower the prednisone.

Good luck!

[Nicknerd]

Hi Tyson,

I agree with Juanita that prednisone can make your blood sugar super high...Mine has been as high as 18, and when that happens, sweating, confusion, nervousness, spinning sensations, hunger (like going ballistic over a bagel...This happened once...I devoured it like it was no one's business), nausea, awareness of heartbeat, irritability, exhaustion...It's scary...It's definately a good idea to get a monitor to see where you're at in that respect...I've noticed that my blood sugar only really gets high during the evening, so morning tests might not be accurate (or maybe before you've taken your prednisone)...

Prednisone took quite a while to work for me...If you have some other condition, or are ill for any other reason, it might be more difficult for the prednisone to do its thing in terms of the MG...

Sorry you're still not feeling well...Please continue to let us know how you're doing!


Nicky

[jana]

Originally Posted by tysondouglass

Hey guys, so just got to Maine last night. The flight wasnt an issue yet, now im feeling it.

I just got up from a nap. I feel very light headed and just overall very tired, and when coming up the stairs my heartbeat goes up very high. I was playing with my cousins (aka ran around the house playing tag for 2 minutes) and could hardly breathe after that, so im not sure what i should do.

I know doing too much could put me back into Crisis, yet, i thought the prednisone would be helping. For today my eye was ALL the way closed.

I didnt know that i was on 80mg of prednisone, which was really high. I was supposed to take 3 a day, not 4. I was getting nose bleeds, and i suppose thats why.


Well, im just checking in with you guys. I thought pred. worked right off. Does it not?

Im drinking alot more water than before.

Ill be careful and hopefully not end up in the hospital.


Hope your all feeling well.

Tyson, SO GLAD that you made it safely to Maine!!!

I'm not on Pred -- but, I think it can take some time for it to "tame" those ole MG antibodies.

You have got to remember that you have RECENTLY been IN the hospital. GIVE YOURSELF A BREAK!!! Things "should" start improving soon.

Tyson, the MORE stressed you are about this -- the WORSE your MG is going to behave. So, try to be "at peace" with "the beast". "Make friends" with MG. (Yes, I KNOW that this sounds crazy -- but, it works for me.)

SOOOOOO glad that you are drinking more -- with Pred, you will also need to watch your salt. Too much salt will blow you up like a balloon -- and shoot up your blood pressure. So, if you "need" potato chips, ask for the low sodium -- or unsalted, ok??

Have a great Holiday!!

[tysondouglass]

I checked my blood sugar this morning. It was 109. I assume
that is good. I know I have been in the hospital latlely, and it just kills me, I can't come to peace with it yet, maybe soon. Yet. I hope it's soon, I hate it. But it'll be okay.

Thank you for everything

[AnnieB3]

Tyson, Well, you are pushing things again, aren't you?! MG pushes right back.

If you drink too much water without sodium you can get hyponatremia. It's a nasty state of being where you can get agitated, high BP/low pulse, dizziness, eyes can't focus, visible tremors, etc. Athletes and binge drinkers have died of it. Sodium is necessary for the body. Not 2000 milligrams (2 grams) a day or anything but a couple hundred are necessary!!!

When you get back home, see your primary doc for a chem panel to make sure none of your electrolytes are off. They often don't do magnesium and phosphorus, which is just silly. Sometimes they have to add these.

Your heartbeat going up means your heart is working hard to get you oxygen. Not good. Again, you absolutely need an echocardiogram and to see a cardiologist. You have to determine if this is the MG or something else.

I hope you make it back home okay. Please be sensible. I know you are still "grieving" for loss of health, etc. - it takes a long time to deal with having a disease like this. Go easy on yourself.

Annie

[redtail]

Hi Tyson,

I agree with what Annie said.

Comming to terms with the fact that you have MG, can take a while.
I still sometimes think "why me", and when my Dr says I will be on medication for ever, I shudder.......yes I know I should be thankful its there to take, but still I would prefer not to take it.
Keep taking care of yourself, listen to your body, get to know the signs and symptoms and rest before you need to. I'm only 37 and my physio said "YOU NEED TO HAVE AN AFTERNOON REST!!!" sheesh I'm too young to be lying down for 30 minutes in the arvo, but it does help.
Hope your holiday is going ok, despite your mg
take care
Kate

[Juanitad]

Originally Posted by tysondouglass

I checked my blood sugar this morning. It was 109. I assume
that is good. I know I have been in the hospital latlely, and it just kills me, I can't come to peace with it yet, maybe soon. Yet. I hope it's soon, I hate it. But it'll be okay.

Thank you for everything

Tyson - 109 is great for someone on high dose prednisone. Please check it again about 1 hour after you eat and make sure you aren't getting post-meal highs especially if you eat a lot of carbs (I've been a diabetic for 20+ years and am currently on a insulin pump which is helping me control me blood sugar while taking prednisone.). Just keep a watch on it and you may be one of the lucky ones who doesn't get this complication. If you start going over 120, you need to make sure you talk to your doc about it when you get home.

Have a great vacation!

[tysondouglass]

Right after eating, i was 185, i tested a few times, and still would be the same.
Is that too much? Im testing it again in an hour. and will let you guys know..
Thanks.

[Juanitad]

Originally Posted by tysondouglass

Right after eating, i was 185, i tested a few times, and still would be the same.
Is that too much? Im testing it again in an hour. and will let you guys know..
Thanks.

Yes, 185 is high. It means the prednisone is affecting your blood sugar. Please talk to your doctors about this ASAP so they can treat the prednisone-induced diabetes. Also, the more you can limit your carbs, the better off you will be until you can start treatment.

Good luck!