[tysondouglass]

So I woke up today, and it took about 5 minutes for me to open my right eye, completly. I have never had that happen. And my I can tell today is going to
be a bad one, just because of that, and I can hardly
hold my head up, I'm so fatigued.

I also when getting up out of the chair for breakfast, was very lightheaded and my vision went blurry and felt
like I was going to pass out.

Why is this happening when I'm on the prednisone? Shouldn't it be helping? Last night I almost choked on an apple, which I thought was also weird since I've had 6 plasmapheresis sessions in the last month...



Please help with any advice

[AnnieB3]

Call your doctor!

I don't like what you're saying - being so lightheaded is not normal. Please get someone to see you. Did they ever do a cardiac workup?

Pred should be helping. Are you on Mestinon?

The balance of drugs with MG is more like an art than a science. Too much can make you feel worse. But my gut instinct is that something else is going on with you. Especially given that one reaction you had to plasma.

Sometimes MG is like this. You can go through bad episodes. Did you go on that trip? Maybe that made it worse.

When I was on steroids, my pulse dropped very low. Can you check your pulse? Steroids act differently on everyone and can have weird side effects. It's always good to have a doctor check on you after you start a drug too.

I hope you will get to feeling better soon.

Annie

[jana]

LISTEN to Annie!!! Here is a link to an article from a leading MG specialist -- scroll down to page 10 -- read the LARGE PRINT!!! (regarding the need for close observation when giving steroids to MGers with breathing and swallowing difficulties)

http://www.uwo.ca/cns/resident/pocke...uscular/MG.pdf

I am also bulbar. I have run a copy of this -- and have it IN my purse -- to EDUCATE doctors, nurses, etc. who don't know any better.

Study this document carefully -- it could save your life!

[Nicknerd]

I agree with Annie and Jana that prednisone can be dangerous for people with bulbar symptoms....A lot of the times, they'll admit patients to the hospital when starting them on high dose prednisone to make sure they can take care of things if there's an exascerbation, or they'll start them on a low dose and slowly increase it in an outpatient setting...I was admitted to the hospital when they started me at 60mgs...

Another thing that could be causing your dizziness is anemia...I found out that plasmapheresis (or maybe at least having it as often as I was having it) caused me to have aplastic anemia...I found this out because my hemoglobin was at 85 a couple of months ago...This was after having plasma exchanges practically every month for 6-months...Suddenly, my hemoglobin went back to 124 one month later....My neurologist said that my bone marrow must have been suppressed as there is no way that hemoglobin can go up that high in that short a period of time, even with iron supplements....

And then there's the prednisone itself...It causes dizziness...i was having horrid panic attacks and vertigo when I first started taking it for a couple of months....There's also the possibility of blood sugar being too high...I was also having blurry vision and feelings like I was in a vacuum or something...It was terrifying...I still get feelings like that now and then, but I sorta got used to it...Bottom line, though, is that it's a good idea to see the doc., Tyson....Good luck to you and let us know how you're feeling...

P.S. What dose of prednisone are you taking?
Nicky

[tysondouglass]

Originally Posted by AnnieB3

Call your doctor!

I don't like what you're saying - being so lightheaded is not normal. Please get someone to see you. Did they ever do a cardiac workup?

Pred should be helping. Are you on Mestinon?

The balance of drugs with MG is more like an art than a science. Too much can make you feel worse. But my gut instinct is that something else is going on with you. Especially given that one reaction you had to plasma.

Sometimes MG is like this. You can go through bad episodes. Did you go on that trip? Maybe that made it worse.

When I was on steroids, my pulse dropped very low. Can you check your pulse? Steroids act differently on everyone and can have weird side effects. It's always good to have a doctor check on you after you start a drug too.

I hope you will get to feeling better soon.

Annie

Annie- Thanks for your help. I called my neuro earlier today, and he didnt call back with an answer. My neuro at UNC (different than my regular) started me on 20mg, (4pills) a day, when i had my crisis. He thought thought with the plasmapheresis and pred. I would be okay on a low dose, so i was in the hospital.. but i went to see my reg. neuro the other day and he said he wanted me on a higher dose.. so he is getting that in place..

I am getting tested for anti phospholipid sydrome tomorrow i believe, so maybe that will bring new answers out...like i said its not all the time that i feel like that, but once or twice i day, i get really dizzy and feel ike im going down..

They did the blood pressure when standing and sitting, etc, and an EKG. but nothing else cardio related.

I still have a pretty droopy eyelid with the pred, which is weird.

I havent gone on my trip yet, I go thursday, and hope it goes well. Im bringing a print out of everything i that i need in case i go into crisis while there, for in Maine, there isnt much for MG help.


Thanks for your help!

Hope your feeling well

[tysondouglass]

Originally Posted by Nicknerd

I agree with Annie and Jana that prednisone can be dangerous for people with bulbar symptoms....A lot of the times, they'll admit patients to the hospital when starting them on high dose prednisone to make sure they can take care of things if there's an exascerbation, or they'll start them on a low dose and slowly increase it in an outpatient setting...I was admitted to the hospital when they started me at 60mgs...

Another thing that could be causing your dizziness is anemia...I found out that plasmapheresis (or maybe at least having it as often as I was having it) caused me to have aplastic anemia...I found this out because my hemoglobin was at 85 a couple of months ago...This was after having plasma exchanges practically every month for 6-months...Suddenly, my hemoglobin went back to 124 one month later....My neurologist said that my bone marrow must have been suppressed as there is no way that hemoglobin can go up that high in that short a period of time, even with iron supplements....

And then there's the prednisone itself...It causes dizziness...i was having horrid panic attacks and vertigo when I first started taking it for a couple of months....There's also the possibility of blood sugar being too high...I was also having blurry vision and feelings like I was in a vacuum or something...It was terrifying...I still get feelings like that now and then, but I sorta got used to it...Bottom line, though, is that it's a good idea to see the doc., Tyson....Good luck to you and let us know how you're feeling...

P.S. What dose of prednisone are you taking?
Nicky

Nicky- When I had my crisis a couple weeks ago I was in the hospital for a week, recieving emergency plasma exhchanges for a few days, then after a week was let out and did outpatient plasmapheresis to get even more strong. I started prednisone when i was in admitted that weak, but yet only 20mg. (4 pills/day) and thats all he wanted me on, maybe because i had a crisis and he wanted to my body through as little as possible.

But, that information is very helpful, i will definitly make my doctor aware of the anemia thing when I see her tomorrow. Im just going to ask her to do a total workup, or as much as she can with the blood she draws tomorrow to cross out anything else on the list.

Im sorry you had those sideaffects, prednisone really does suck.

Im getting puffy and out of shape, and at 17 i hate that! Its so frustrating not to be able to go out with my friends. I just want to be cured. Im going med school to find a cure for this disease for all of us!

Thanks for your concern. I hope your feeling well.

[dog lover]

Tyson,
I hope you get some answers soon. I know this is a frustrating disease. I noticed you said you still have a droopy eyelid even while taking Pred. I too still deal with that and have been on Pred for about 2 months now. That is where my Mestinon comes in. If I take it when my eye starts drooping it usually helps for 4 hours or so. Neither Mestinon or Pred alone help but the combo seems to help temporarily. I can tell you though that after about 5 or 6 weeks of Pred I feel more like my old self than I have in a year. Give it some time to kick in and I think you'll be amazed at the results. I also have my energy back and have been able to walk again so try not to stress about feeling flabby. There are some scary side effects to the Pred in the short and long term but I would take the way I feel now with the Pred over the way I felt without any day!!! Hang in there and try not to overdo it on your trip. I know it is sooo hard. My biggest problem is knowing when to say I've done enough. The better I feel the more I fight that but I have realized I pay for it later if I don't force myself to take a break now and then.
Kendra

Originally Posted by tysondouglass

Nicky- When I had my crisis a couple weeks ago I was in the hospital for a week, recieving emergency plasma exhchanges for a few days, then after a week was let out and did outpatient plasmapheresis to get even more strong. I started prednisone when i was in admitted that weak, but yet only 20mg. (4 pills/day) and thats all he wanted me on, maybe because i had a crisis and he wanted to my body through as little as possible.

But, that information is very helpful, i will definitly make my doctor aware of the anemia thing when I see her tomorrow. Im just going to ask her to do a total workup, or as much as she can with the blood she draws tomorrow to cross out anything else on the list.

Im sorry you had those sideaffects, prednisone really does suck.

Im getting puffy and out of shape, and at 17 i hate that! Its so frustrating not to be able to go out with my friends. I just want to be cured. Im going med school to find a cure for this disease for all of us!

Thanks for your concern. I hope your feeling well.

[jana]

Tyson, are you drinking enough? You probably need to have a bottle of water with you just about all the time. I'd aim for 8 oz every hour -- YES, I know that sounds like a lot -- but, with Mestinon and MG, you need more than normal. That might help with your dizziness -- drinking seems to help with mine -- NOT sure why, though -- Annie or Alice would probably know.

[AnnieB3]

Too funny, Jana!

When you are dehydrated, your blood pressure tends to drop when you sit or stand up. If you don't fill your veins/arteries up with enough fluid, they can not fill up properly when you do something or sit/stand up. Kind of like if you took a fabric tube with any substance in it (I know, I know, dumb metaphor) and then watched as you took it from lying down or sitting to standing straight up. Gravity can draw all that stuff - or water - downward. Okay, here's one . . . it's kind of like trying to get water out of a fire hydrant into a hose when there is little water in the pipes. Oh, heck, someone come up with a better one!

Pressure in the body is different. You can have high blood pressure when there is a narrowing of an artery and low blood pressure when there is adequate or an expansion of one.

That's why I was wondering about an artery problem somewhere with you, Tyson. Your BP went up when you had the plasma. If they don't do enough tests or the right tests, like an ankle brachial index (blood pressure done on arms and ankles) or taking your BP on BOTH arms, they may miss something. A blood pressure difference between arms of greater than 10 can be a sign of an arterial narrowing. And cardiologists consider your real BP to be the one arm that is higher. A BP is not hard to do and isn't expensive.

They can also do what is called orthostatic blood pressure, where they can take your BP while you are lying down and then standing up. If the systolic/upper reading rises 20 or more, you are probably overhydrated. If it drops 20 or more, you might be dehydrated. I say probably and might because there are other reasons for it to happen such as orthostatic intolerance.

To check hydration levels, a doctor can also do BOTH a urine and serum osmolality. The reason to do both is that there is more than one reason for being either over or under hydrated.

http://www.rnceus.com/renal/renalosmo.html

And there is more than one clotting disorder out there, like Factor V Leiden.

Anyway, hypertension should ALWAYS have a differential diagnosis and workup done before a drug is thrown at someone. There are LOTS of reasons for it. And when you are on Pred, sodium is the number one culprit for raising blood pressure. And, as Lizzie and I know all too well, a high BP over a period of time leads to kidney failure (I don't have kidney failure, or low kidney function, but my Dad did).

Hope you are getting answers and feeling better, Tyson!

Annie

[Juanitad]

I havent gone on my trip yet, I go thursday, and hope it goes well. Im bringing a print out of everything i that i need in case i go into crisis while there, for in Maine, there isnt much for MG help.
/QUOTE]

I know what you mean about the medical care in the small hospitals along the Maine coast (if that's where you are going) I took a RV trip with my sister and her husband about a year after dx and ended up having to visit 3 hospitals along the coast with bronchitis/pneumonia and resultant mg problems.

They were very nice and really tried, but after the first one, I had them call my neuro back in TN before I allowed any treatment. At least they admitted they didn't understand the issues and were willing to call my doc.

Good luck and have a great time! Maine is beautiful and I loved the trip even with the hospital problems. (Of course, I was born and raised there so I might be a little biased!)