Dont know why
 

The plasmapheresis isnt doing its job so much this time...I was so ready to feel better, but im hardly better. I can swallow, and breathe, yet they arent the best.

Today while driving to the hospital for my 6th and final plex for a while, and my right eye was all the way closed...not how its supposed to be after 5 sessions of plex. Im weak all over, and i dont know why. I thought id be better.

Im having horrible headaches, and one leg just collapsed, coming up the stairs.
HOW, have you guys coped with this disease? I thought i was doing well, but when treatment doesnt work, ITS SO HARD.


Im on 1000mg of cellcept, 60mg of prednisone. What else will work? anything?

I have my specialist appointment at duke on the 15th...so maybe that will lead to some new discovery.


I hope you all are well.

Hi Tyson,

I'm so sorry you arn't feeling any better.
How are you feeling in yourself, well or no well, might you have an infection of some sort.
I remeber on a few occasions wondering why I was feeling so attrocious, and then ended up very very sick, with a raging temp, my GP took one look at me and told me to go to the ER. I stayed in hospital for 3 days, on antibiotics and on a saline drip.

Sometimes its easy for me to pin down why I'm having a bad day or two or three, ie lack of sleep, hormones(yep they affect us girls every month, and I know I struggle) doing too much. Sometimes I just crash for no apparent reason, and just have to rest.

I was on Imuran to begin with, and am now on cellcept. Its really up to you and your Dr to decide what will work best for you. But you have to remember its a disease that can't be rushed, it takes time to level out. I know its hard to take, we all want to see instant improvements, unfortunatley it doesn't usually happen with this disease.

I wish I had answers for you, but I don't, I seem to have lost my magic wand to, other wise I would be waving it furiously for all of us.
take care, rest and try not to stress to much, as this will only make you worse
Kate

What I am going to say here, many may not agree with. Talk to your Dr about weaning down your medications. If your MG is starting to get better and you are taking to much medication than you will actually be worse.

That is how I was when I went into remission, I was getting worse and "I" am the one who decided to wean off the medication {with Dr's help} NEVER just stop meds but talk and work with your Dr.

I am sitting here hoping that you are just on to much med. I read here how many are on cellcept and other things that I have never tried and notice how much your MG is worse than mine {I know everyone is different}.

Sometimes one has to "start fresh" as we get lost in all the meds.

I hope with all my heart that you start improving.

do you not take Mestinon at all? Pred and Cellcept are both long term repair options (immuno suppressants) and take a long time to do their thing (pred takes a year+ to improve things based on what I was told by the specialist I went to see). You should have *something* to treat the symptoms and get through the days. You also need to speak with your doc about the full run of plex not doing anything for you, that's really odd.

Dont know why
 

Joan Marie,
I am in 100% agreement with you on this! I too believe alot of times we are overmedicated and end up in worse shape than we started. I know that is definitely the case with me. I have stopped taking my Agrylin and also the Ambian the Dr gave me to sleep due to the HORRIBLE insomnia I have from the Pred. I am tapering down off my Pred too but that is going way to slow for me but there isn't a choice on that one.
Tyson I just think you are an amazing young man and I admire you so much for working so hard to try and beat this disease. I have 2 sons close to your age and I love them to death but honestly I don't think either of them could cope with this as well as you have. I know you are struggling right now but please know that everyone is here for you and we think the world of you. Your spunk and youth bring a refreshing change to us older ones LOL!
I'm off to the Hematologist for labs and to hope to have more info when I leave as far as how much of my health problems are Agrylin related.
Kendra

Kate- thanks for your support. I do have a sinus infection, again, never really got rid of it while using the horrible clarithromayacin (sp) yet now I have a new antibiotic augementon or something. That supposedely is okay to take with MG. So hopefully that will get rid of it.

I think/hope thats why my days are so bad right now, I want to be able to go skiing, more than anything!

I realize everything takes time, but i hate that about it, its so hard to be able to cope with the time factor, even in normal life circumstances. Yet im doing it..
Thanks again kate. Your a great help. And dont worry about not having answers, its quite fine.

JOAN- i have asked my doctor to taper me off my pred, for its not doing ANYTHING. While I had my crisis a week back, he said he wanted me to stay on it, for now, and in 2 weeks i could start tapering off it. -Though to some degree I am on the same page with you..
Maybe the specialist at Duke will have more answers.

Brennen- I tried mestinon, yet it didnt do a thing for me. I went from the highest dose possible, to the lowest dose and didnt see any improvement, so i was told to stop trying.
Im not sure im on the same page with how fast your saying pred. works. It shouldnt take up to a year, from my studies. It should only take up to a month or 2 at max to show some kind of improvement, and it hasnt yet.
Theres nothing else for me to take, for a day to day basis, its all long term right now, hopefully waiting for the thymectomy to kick in.

Thanks for your concern.

Kendra- Thanks so much for your words, they mean alot. Yet Im not sure, maybe i just seem alot stronger on the website, or maybe i truly am what you guys think i am:) Strong. I just read your post about the Hemo, yet I havent seen alot of your posts, so im unsure of what agrylin is...But i hope things go well, and that you test neg. Though if you do test positive, im glad your hemo is going to treat it as aggressively as he can. You deserve it.



Hope you all are doing well.

Tyson,
Don't be so impatient, I started Pred mid August 2007, constantly increasing to 75 mg/day (1 mg/kg of weight) and I only saw improvement in my muscular strength begining of January 2008 but sight problems disappeared after 3 or 4 of weeks...(I had generalized MG).
I had two series of IVIG without any effect and 5 PLEX in January, which effect was dubious as I think the improvement at that time was due to Pred.
I used to swim every day but it took me a year to be able to resume that activity.
I'm now in a relapse period and I have PLEX on a weekly basis and this time they work and keeping me afloat, waiting for the Pred(50 mg/d) to kick in.
One last word, Mestinon did not seem to work to work at the begining but Timespan did, as without it, swallowing the first Mestinon tablet of the day was horrible, constantly choking, it was taking me half an hour to go through...
I think you are expecting too much of Mestinon...
Take it easy and let time pass.
Maurice.

Hi Tyson,

I want you to be able to go skiing to, and have a great time!!!!!!!!
I've been skiing once in my life, over in Victoria (australia that is) I was covered in bruises, was cold all the time, but had the best time, I didn't want to leave.
So I'm hoping you can, will go
Kate

Neutro,

After reading your message to Tyson, I noticed we have a lot in common! Mestinon also didn't seem to work for me at first...After adding prednisone, it worked much better, as did PLEX...PLEX used to work well for me for DAYS (in the begining). After taking prednisone for a few months, it worked for up to a month...

Prednisone also didn't kick in for many, many months for me as well...

I've had to taper my pred. because the side-effects were brutal, and i've always felt like it hasn't worked for me...I know that it has, though...My arms and legs are much weaker now, especially my arms...My facial weakness is very bad again too...

I went swimming today, and my legs were like lead...Couldn't do the front-stroke for very long either...Worked out in the gym, and felt good, but extremely heavy....Am hoping that continuous exercise, as much as I can handle, will be good for me in the long-run, but it's a bit discouraging in the short term when you're very outta shape and have MG...

How are you doing lately?

P.S. Have you tried Imuran? I'm on that now, and waiting patiently for it to hurry up and start working!

Nicky

You mentioned time-release...That has been a life-saver for me...It also works much better than regular mestinon for me, and has allowed me to function somewhat normally...Also, taking my mestinon extremely vigilantly