hehehehehe -- you'd have to know me -- SCARY smart is about the biggest compliment you can get from me. IQ is my favorite subject -- LOL!!

Hey guys,

Thanks so much for the info. re. prednisone. I didn't make the connection between peak hours of cortisol and when a person should take their prednisone.

One day, a while back, I took my prednisone twice in one day by accident. What happened was the mestinon and prednisone look almost identical. Anyway, I had taken it really late at night and it messed up my sleep. It was pretty scary, and i even called poison control because I had basically taken 140 mgs of prednisone in one day- very freaky.

Anyway, this episode messed up my whole pill-taking schedule. I basically take my prednisone at around 3pm everyday. I realize now that this is obviously why I am having trouble sleeping, lots of side-effects, and maybe even why my MG symptoms don't get better until pretty late at night...DUH! lol

Thanks for the info., guys. I will take it tomorrow very early in the morning. Hopefully, this will improve things.

P.S. Are those new pumpkin carvings, Annie? They're really nice!

Nicky

This is for the boffins since I know what they are now (LOL)

Alice,
I would love to hear your medical opinion on what I've discovered...
After spending the last couple of hours researching all my meds and my symptoms I may have come up with something. From what I've read the Dapsone causes an increased platelet count and weakness. I am going to call my hematologist in the morning but think that is what is causing this horrible fatigue and shakiness. I have Thrombocytosis which is a high platelet count. I am on Agrylin which keeps it well controlled and my platelets run around 450,000-500,000 now. I am honestly terrified and am not taking the Dapsone in the morning until I talk to my Hemo. I am so scared that my platelets have skyrocketed and I don't want to risk having a stroke. Do you think this could be a possibility?
Kendra

Kendra, Sometimes if my symptoms are mild and I'm going to just be at home, a strong mug of coffee can take the place of my mestinon.

Hugs,
Pat

Hi Kendra,

have you had your potassium and iron levels checked.
I was low in iron, and I was sooooo tired all the time.
Pred can lower your potassium, and it can cause all sorts of probs, including heart probs.
Not saying this to worry you, and it may not be either of these, but its as easy as a blood test, and worth checking.
Kate

I think that calling your hematologist and making sure that there are no unwanted interactions between all the medications that you are getting is the right thing to do. it is also fairly easy to do a blood count, and see if there is any increase in your platelets, instead of being worried about it.
are you on aspirin? because even with relatively high platelet counts in someone who is young and has no other risk factors it is a very good prevention for stroke.
I also think it is OK to skip a dose of Dapsone if you are concerned about it. I believe it was given as a preventive abx. and not treatment?
I know it's really tough to have to deal with so many things at once. it may be good if you could also get all your physicians to communicate with each other, and that way you would feel safer with the treatment you are given. because obviously you don't want one thing to get better and the other to get worse.

alice

Thanks Annie,

but, I would be super stupid, given the fact that I been studying medicine for my entire life, if I didn't know some.

I have to regretfully admit, that even though I have been perscribing steroids for years, I never realized what it really does, and how much one hour difference can make a difference.

I have always listened to my patients and thought that they know what they are experiencing best. but, this made me realize how hard it is to really know.

since I became ill, I stopped saying the stupid sentence-Oh, I can imagine how you feel. that we, the physicians say so many times, thinking that we really can just do an intelectual trick and put ourselves in our patients shoes.

no way, we can't. we cán't even know how we ourselves would feel under such circumstances, so how the heck can we know how someone else would?
we just have to listen and hope we can get a glimpse.
I have never carved pumpkins, so even if I try to think what it would be like not to be able to do so, I can't really.

I know that I have gradually found the way to do what I want to do, but some of it, was by changing what I want to do. just like the king in the "little prince". or doing the core of it, but not doing it.

no, I don't like this illness, and there are times when it really makes life harder, but I don't hate it that much any more either. I just see it as something that's there.

I don't know if what I say makes sense, or helpful in any way.

and people really only get a glimpse at each other's life.

this is what my son gave me, a year ago, when I was talking to him about how hard it is to understand (or explain) what one is experiencing.

The stars are the apexes of what wonderful triangles! What distant and different beings in the various mansions of the universe are contemplating the same one at the same moment! Nature and human life are as various as our several constitutions. Who shall say what prospect life offers to another? Could a greater miracle take place than for us to look through each other's eyes for an instant? We should live in all the ages of the world in an hour; ay, in all the worlds of the ages. History, Poetry, Mythology! – I know of no reading of another's experience so startling and informing as this would be.

Walden, Thoreau

Your pumpkins are such a beautiful work of art!

Hugs,
Pat

Annie, your pumpkin carvings are AWESOME -- BUT, this is all I could think about.......we grew pumpkins in our garden(s) this year. Of course we are organic (no pesticides) and after the pumpkins got really big, we picked them and put them into the barn to "cure". Didn't help -- the squash beetles STILL found them -- and ate holes -- and they rotted. Talked to some pumpkin farmers -- pumpkins just HAVE to be treated with pesticides or else they have the same problem we did. So, I'm thinking........you carved THREE of these TOXIC fruits!!!!!!!!!!! I'm cringing. And, you did say you weren't feeling well, right?? I now use borax (the washing powder) mixed with sugar (equal parts) -- and pour that around the foundation of my house to keep away ants. May try THAT next year around some pumpkins.

I get my pumpkins from an organic farm. They stay nice and happy in our dark freezer room. Never had any bug problems or imploding. So keep them in a dark, cold little area - on some kind of paper or box cover - and they should stay in good shape!

Thanks, I love carving. Anyone can do that, BTW (meaning, Bring Tools With).

Annie

And there is a book out there that I got for my Mom called ""Who Knew." It has great, easy solutions to pests and all kinds of things.