HI Nicky, I like Desertflower, get frustrated with all the different opinions among the neuros on the same subject. Any specialist I've seen, All prefer Cellcept over Imuran. And yet, I do know a couple people in particular who have total remission from any symptoms while staying on Imuran. I think it's call Drug induced remission.
I won't go into every little detail, but I had a violent reaction to Imuran. And yet, had a good experience with Cellcept.....okay, well except for that little kidney issue
With Imuran it took about 7 days for it to turn on me.
Over and over again, I've been told by fellow MG'ers that if one can't take Imuran, then they usually can take Cellcept, and vice versa. Just a word of mouth kind of info.
I hope and pray this works for you. I want you to be out there enjoying life too. I know how that feels, and feel that way myself.
The whole Imuran/Cellcept debate, probably depends on ones body, and medical problems, and even what kind of MG they have, along with other AI diseases.
I'm glad they're doing a gradual increase. That's what they did on me, and I'm glad, cause it was serious enough on the smaller dosage.
Have they talked to you about CycloSporine? I'm on that now. I haven't had any side effects really. Can't think of any right now.
Please keep us updated on how you're doing.
Love
Lizzie

Hi Annie,

With the tongue thing, my tongue isn't 'chewed up' looking, the way an 'atrophied' tongue is. It's weird. It only has that triple-furrowed appearance when I can't move it. Otherwise, it looks completely normal, other than the fact that it has a crimped look at the sides.

For example, for some reason, my tongue was working perfectly yesterday for the entire day, and it looked skinny, small,red- the way it's supposed to. It took much longer than usual for my voice to go nasal, and I didn't have slurring as much. I'm not sure why I was having such a great day yesterday in terms of the MG, but I was! This is why I feel sure it's from the MG, the way my tongue looks. If it were truly atrophied, it'd always look that way. But it's only when I can't move it. I can't flex it, so it's all fat. It almost looks like the blood supply to it has been cut off too. It's weird.

Desert- I know what you mean about the mestinon. I don't know if I can agree with the neurologist, but, it looks like taking 120 mgs of mestinon doesn't cause problems for me. In fact, I think that it might work very well. I think that this entire time, I've been under-medicating, and maybe that's why I've been so 'refractory.' But I do agree with you, logically, when you look at how mestinon works, it seems that people *should* be able to overdose on it at least at some dosage. I totally agree with you.

Jana- I'm so happy to hear that your neuro. has had such good results with Imuran, but am sad that you can't give it a try! The way you've described the liver problems in your family, it reminded me of alpha 1 deficiency, like what Joanmarie has. It affects the liver and lungs- can cause liver cancer/problems, and early emphysema in people who have it. It's genetic. I noticed that Joanmarie has trouble with allergies and such, and you've said the same thing with other meds. you've tried. I'm probably totally off the wall here, but the way you described it reminded me of it.

Lizzie,

I know what you mean...I met a woman in the hospital, a nurse, who was in remission with cellcept. I noticed that her voice was a bit nasal, but other than that, she was doing great! She had had a thymoma too. She originally tried Imuran, but her liver enzymes got too high, so she was switched to cellcept. Both my neuros. say taht they start at the weakest immunosuppressant first, then move up the ladder. The last one I saw said that prednisone increases the risk of cancer too (but it's the lowest of all), so the first line of treatments is prednisone (mainly 'cause it works faster), tehn Imuran, then Cellcept/Myofertinil (sp.? I totally spelt taht wrong...lol), then Cyclosporine, etc.

I read about your reaction to Imuran in another thread. That sounds really scary. I'm so sorry you went through that! What exactly was it about Imuran taht caused this reaction? Do you think that it reactivated some kind of infection or something?

Well, yesterday was actually my first day taking it. Guess what? I still have my widsom teeth on the left side. They've been causing problems for me for years, but since the MG, I've bee reluctant to take them out. BUt they're infected, so I've been on antibiotics, and I got the upper one taken out yesterday. Yesterday was also my prednisone day, so I had the mother of all headaches. Not sure if it was from the Imuran, toothe being removed, prednisone (ate sugary/salty things yesterday), but it was brutal!

I'm worried about taking out the lower one because they have to freeze one of the nerves taht supplies the tongue and lips. I remember that when I got the lower one on the right side taken out, it took like 12-hours to be able to move my tongue again. I noticed the mild slurring after that. I've always wondered about the removal and whether this made the MG worse, or *choose* to attack that particular nerve? I know it sounds weird, but that removal really affected my being able to move my tongue well. It's probably a coincidence.

Anyway, despite my headache yesterday, the entire day was a good one in terms of moving around, and it's seeped into today. Still able to move, without the profoudn weakness. I hope that when the imuran kicks in, I'll be practically normal!

Thanks gals!!

nicky

Nicky,
I hope the new Mestinon dosage helps. I know I felt so much better when I found the best dosage for me. I am glad you had a good day and hope you have more good days.

Hi Nicky, I don't want too scare any of you who are just starting Imuran, so let me start out by saying I have other medical problems that getting sick on the Imuran aggravated.
Like others who are starting the Imuran, I was put on a very small dose, as my body is super sensitive to meds, and chemicals.
Anyways, after about 4 days, I started feeling nauseated, I was told this was normal, not only by my doctor, but the pharmicist, and other MG'ers.
On the 7th, or 6th, I awoke in the middle of the night, vomiting violently. So violent, I cracked a rib.
That incident, caused my body to fall right into Cyclic Vomiting...a horrible disorder. Because I was sick and throwing up as violently as I was, it triggered my Dysautonomia, causing my heart to basically go beserk.
I remember laying on the bathroom floor, unable to call out for help, and just asking the Lord to please don't let it be my daughter who would find me in the morning. I was certain, I was going to die if I didn't get help fast. My husband woke up, and heard our dog,realized something was very wrong, and came to help me.
Anyways, it was my body's reaction to the Imuran that triggered everything else.
It was a very scary time, and I never want to take that again. From what I understand, I'm not alone, many other people get violently ill from Imuran, but with my added health issues, it became deadly for me.
So when I came time to try the Cellcept, I was frightened, really frightened.
But all was fine as far as no side effects like that.
I don't want anyone to ever go through what I went through with it.
And yet, I want you all well too. So, we all have to weigh our options.
Hope this helps
Love Lizzie

Thanks for sharing your experience, Lizzy...Wow, I can't imagine that...I've had extremely high fevers before, though, that made me feel like I was dying...Vomiting, turning orangish, feeling delirious (almost hallucinating), sweating through the bed sheets...Other stuff, but gross...I think that's why I'm so scared to lower my immunity...Getting sick (or high fevers) is like being on the brink of death for me...It's always been that way, since I was little...In fact, every time I get a fever, I *feel* like I felt when I was little...It's hard to explain...But it's like I go into a time machine to that perspective I had...That's a big reason why I've been putting busting-my-immune-system on the shelf...

I hope that I can handle what comes, though...I also wonder if the reason why I feel so unbelievably sick when I get sick (I know that sounds weird..lol) is maybe because my immune system is attacking myself...If that's the case, I don't feel so bad about breaking my immune system a bit, but if it's because my immune system is already weak when it comes to 'strangers', that's another story...

With the disautonomia, what are the main sx you experience?

Nicky

Imuran and me didn't get on, I was eventually changed to cellcept.
I would get up in the mornings and think, hmmm do I be sick now, or eat breakfast first?!?!?!
Not really what you want to be thinking first thing in the morning.
I still do get my cyclic vomiting/nausea, but not as often, and take probanthine to help me over the worst. Ahhh the joys of MG, take a tablet to help that and take half a dozen tablets to help with the side effects of that drug

Hi Nicky and Kate, Dysautonomia is a Disfunction of the Autonomic Nervous system. Common symptoms are fainting when bending over too fast, or getting up too fast.

Severe dizziness upon standing too fast, or bending over and then standing up again.
There are many things that can happen. For me, it causes my heart to soar up to, I think the highest I've ever been was 220, very dangerous. Other than that, it was very common for me to be about 150 at rest. Right now meds help me stay stablized. However, if I'm stablized, and I have an EMG, it will throw my heart into a frenzy, and if I'm having problems with my heart, an EMG actually will help.
Any how, no one wants to do EMG's on me unless it's an absolute need. I've been dealing with this long before MG, so when they told me I had MG, I thought, No Way. I have a very very rare disorder, the chances of having Dysautonomia, and MG, were just off the charts. And then when they stumbled upon my having Pulmonary Hypertention, medical testings were my life. Having three extremely rare things going on in my body, almost threw me into a deep depression. I did well when I was first diagnosed with Dysautonomia, and then MG, and felt actually relieved about the Narcolepsy, but the Pulmonary Hypertention just threw me into such sadness, a sadness, I never want to feel again. Through prayer, surgery, and many prayers, my numbers are down, and I want them to stay down. Just when I think I'm out of the woods, the kidney disease rears it's ugly little head.
Kate....(((((((hugs))))))) Cyclic Vomiting is beyond horrible!!!!! No one can understand until they experience that uncontrolling feeling of having it. It's horrible. And very scary. Nicky, when you were describing about how your were feeling about your body when sick, that is so true. It's that intuneness (think I just made up a word ) with knowing our bodies that we have to know, and feel.
Every time a new specialist is introduced into my care, they always want to retest for everything. At first, they're like, "No Way",and they do read the previous test results, but always seem to feel the need to test themselves. And almost with out fail, they're like, " Of Course we expected for these to come back saying this, or that" you know like he never doubted for one moment, but they always throw in "Do you have any idea how rare this is?" Um, yes I do. And I'm not happy about it either. I won't do additional testings anymore. It's too hard on my body.
((((hugs))))
Love Lizzie

Hi Redtail,

Oh man...Cyclic vomiting sounds terrible......Is that from the Cellcept, or is that a left-over effect from the Imuran? I'm sorry that the Imuran wasn't more gentle on your system...Boy, it seems like barely anyone can tolerate it...

This disease really does suck...First, we have to take toxic waste in order to treat it, then, half the time, even the toxic waste barely takes the edge off of it, it seems!

Is the Cellcept helping a lot?

Lizzie,

I don't blame you one bit for getting depressed- you've got a lot on your plate. Having a pulse of 220 is insanity. Did they check to see if you have the ganglionic achr antibodies? I read that people with acquired dysautonomia have these often...

My dad is like you in that he has a lot of illnesses like these as well. He has Dermatomyositis and he was diagnosed with Narcolepsy as well many years ago- decades ago. He got Dermatomyositis 15-years ago. He also has some type of seizure disorder that his father had as well. OCD and bipolar disorder are also rampant, coming from my dad's dad's side, and all the kids, including my dad, have these. I don't think that these things are a coincidence. I had a thymoma, and I've read that many with a thymoma have had polymyositis/dermatomyositis (both paraneoplastic diseases like MG). So my issues definately come from my dad's side, I'm sure. I also have OCD, was diagnosed when I was 15. I tend to think that the weird/unusual illnesses hang out in together for a reason- I think that they have the same unusual cause. I don't think that bipolar/OCD are always associated with these other autoimmune problems and are necessarilly organically caused, but I know taht the mental health issues that run on my dad's side have been diagnosed as a range of different disorders over the years, and have been extremely hard to treat for everyone affected. This makes me think that they're truly organic. The changes in affect/cognitive abilities seem to be subject to some internal thermostat that's being recalibrated constantly, the way the MG is subject to the same unpredictability.

How's your thymus? Did they take it out?

Anyway, whatever the cause, there's the impact. We have to live with them, and find some way to do so as peacefully as we can. Thank God you're able to manage, thanks to prayer and the surgery. I'm not very religious, but i do pray. I've been shopping around lately, trying on different religions (I wasn't really raised with religion), in the hopes of finding my best fit. Spirituality, or good spiritual health is very important.



Nicky

Nicky, I just put it down to the fact that my body gets sick of all the toxic meds in my system, and trys to purge itself occasionally. At least its not as bad as it was.
Yes the cellcept does seem to be helping.

I still get the urge to throw out all my meds, occaisonally, when I line them all up each morning and evening I sometimes start to get a bit overwhelmed. Then I think that some people arn't lucky like me to be able to have access to them..............

Hi Nicky, The Tilt table is also used in diagnosing Dysautonomia. I do still have my Thymus. Your poor Dad, it sounds like he's been put through the mill too. It's not fun. Is he on Provigil for the Narcolepsy? I can't imagine dealing with Bi-polar as well. That would be awful. Just adds fuel to an already hard to control fire.
We have each other to get through it, which is good.
Love Lizzie