So glad to hear that your headache is gone. I take 5 day IVIG every 4 weeks, and always drive home with a headache and stiff neck. Drinking extra water seems to help minimize that. Two days after my previous IVIG, I got a 101' fever. The advice nurse recommended Tylenol or Advil. Tylenol did nothing, so tried Advil, which started reducing the fever in an hour. I take two Mestinon timespan per day, as the 60mg tablets seemed to put me on a symptom roller coaster. The time span is a much more slow, gentle ride for me. I take the 2nd dose at 4:00 pm, and the next morning, I'm pretty weak. After the 10:00am dose, muscles start working better. I hope you can get a valid diagnosis soon. Your picture is just fine upside down. Hope you feel better real soon.

Methotrexate is given for quite a number of conditions. I have two friends with severe Crohn's and they despise taking the medication.

Maybe he's trying to diagnose some things by giving you this. I know I took a Dexamethasone Suppression Test once and it didn't give any conclusive result.

Also, I was given a 5HIAA screen to test for Multiple Endocrine Neoplasia...also negative...but, with normal Liver function would be anyway. I didn't understand that either...

Yay! I'm glad that your headache is finally gone. I hate headaches but the ones that come from treatments are the worst. Why does there have to be pain after a treatment that is supposed to make you better. : -(

Glad you are feeling somewhat better.
Hugs!!

Angie

I've been taking methotrexate for the last 5 years to treat my RA and I love it. I take 15-20 mg once a week and I haven't had any side effects from it- only relief of my RA symptoms. I do notice that my MG symptoms flare when I stop taking it. MTX is much less expensive than Cellcept or Imuran so it is being tested as an MG treatment option in developing countries where people can't afford medications.

I feel pretty similar to you....my symptoms are also worse in the morning, initially double vision was only in the morning when I woke up and after a few months it became constant. My neuro ophthalmologist believes I have MG, my regular neuro treats me for it but any neuro muscular specialists I have seen believe I do not. No antibodies, no positive response to prednisone and no positive emg or sfemg. I do respond a little bit to mestinion and IVIG was the only thing that I had a strong positive response to, unfortunately I had a blistering reaction to it and no one wants to risk a continuation. One of the things that was said to me when I was in the hospital for breathing exasperation was that I should not be taking such harsh medications if I do not have MG. And that scared me as well, I'm already messed up and on an emotional roller coaster, I don't want to add to it. = )

Anyways, welcome to the board. I'm happy to help if I can. = ) I'm also dealing with strong anxiety and depression - I take Cymbalta and have for years, have recently stopped working and am thankful for my faith and family to help me through.

Christie, we sound as if we are in the same boat. I just finally agreed with my neurologist's recommendation I take Cellcept. Tomorrow I pick up the script, and I'm petrified. I asked him today before I said yes, "are you sure enough in my myasthenia diagnosis to justify the risk of taking this medication?" He said yes. I had negative antibodies, negative MRI, unclear positive response to Mestinon, and a "somewhat abnormal SMFEMG. However, he says that the last two times I have been in his office my eyes have clearly been behaving like I have MG. So I guess I will stop ruminating on the risk of cancer and take the medicine.

Erica~
I too was very hesitant to take Cellcept but I started it in February this year because I could not get good enough control with mestinon and prednisone. I have had a handful of BCC in the past and my dad has had melanoma so naturally I was scared. I also had cervical cancer at the age of 19 so I know what that fear feels like for sure. Now that I'm on it and it is finally starting to work I have much better control of my symptoms and I am happy that I made the decision to start it. I fear where I would be without it more than I fear cancer right now. I hope that you feel the same way 6 months down the road.

Let me know how you are doing with it once you get started. I haven't had a single side effect to date. Yay for small victories!

Aloha and hugs to everyone!!
Angie

Thank you, Angie! I will let you know how I'm tolerating it. I have read about the side effects from increased infection down to GI distress and acne. They all sound pretty minor. The only thing I am worried about is cancer. I took care of my Grandma (the sweetest woman I've ever known) as she died of ovarian cancer and it struck me to the core. I'll keep you all updated. Please do the same, any of you that are taking immunosuppressants. Thank you everyone!!!

Ease into it...if it's too much, back off the dosage or see if there is something else that can be done.

I've found that my illness will compromise with me, to some extent...it's just finding the right balance.

On Askapatient.com...the drug gets 4 out of 5 stars...

Hi, TibetanTiger. Stopping the progression of this disease can really improve our lives and our long term prognoses. There are limited options, and once you start an immunosuppressant, you need to commit to the duration of time it takes to work, unless it is not compatible with health, which happens. I am just explaining why so many of us are adamantly pro treatment here; a person can lose a lot of ground by being indecisive or being denied treatment. I never even took ibuprofen till I got this disease. My, how things have changed. But I am happy to be able to sit up, chew, breathe, walk, and swallow.

Also, I think the risk of cancer is linked to long term use of immunosuppressants, but there are new alternatives hopefully coming down the research pike, so maybe we won't take these drugs forever.

My uncle took Imuran for 20 years after a kidney transplant, and he did beautifully! Transplant recipients take higher doses, too.

Erica, maybe you'll get running again! ;-)

On my gosh can you imagine?! I would be thrilled. I actually went for a run/walk couple weeks ago and it went okay.... I just have to change my standards of what is exercise. I used run forever without getting too tired. I also didn't used to listen to my body like I do now.

Hopefully in 20 years if I do get cancer it'll be curable. Until then I can't just let this myasthenia get the best of me. I'm very thankful that they diagnosed me so quickly. I think it helped that I already went to the eye doctor every six months for my keratoconus. They had a seriously steady baseline to compare my symptoms with.

Given the choice between the risks of immunosuppressants and the ill effects of MG, I'll take the immunosuppressants every day (and do). For many of us this is not even a difficult choice, but really the only one that gives us back quality of life or the possibility of quality of life. The earlier the diagnosis and choice is made, the sooner the good things can happen. (Drug effects, too, but . . .)

Statistics don't really matter for individuals, but are still heavily in favor of stopping progression (which is not inevitable, but IS highly likely) over the risks of the medications. Like everything else about MG, what will happen is unpredictable, what will be discovered may be unpredictable as well.

The only reason for hesitating to have aggressive treatment that I would have, is that something may come along better that having had a previous treatment would preclude, but that is another risk I am willing to take. It is more a concern for our younger MGers. b.

Whenever I feel gross about the idea of immune suppressants, I remind myself: I don't smoke or drink alcohol, I eat well, exercise, and don't let myself get stressed out, all things I do to accommodate MG (I know not everyone is strict about these things, or can't be, but I know many of us don't smoke or drink bc it makes our symptoms worse). And I am more careful to wear sunscreen. So I imagine these changes are helping to even my chances of cancer.

My doctor told me the statistic on how much Imuran raises my cancer risk (though, as b. pointed out, statistics don't really matter for individuals). I don't remember what the number was but it wasn't a huge difference. (I want to say increases lifetime risk by 5-10%? Not sure) I googled it quickly now and couldn't find it.

We have no way of knowing what will happen to us in the future, or what theoretically could have happened if we hadn't gotten MG...so please don't worry about the cancer risk. Hopefully, the meds will work, and prevent any progression, and restore your quality of life.

Like many here I had struggled with the choice to start an immunosuppressant medication. Before my diagnosis with MG, my decision to take Imuran was to help control Crohns and Colitis,this was about 4 years ago. I had initially delayed agreeing to start therapy with Imuran, but the need for basically emergency surgery to correct a fistula opening up into my pelvic cavity causing peritonitis helped convince me.

I have over the past 3 years since that happend, developed a healthy respect for autoimmune diseases, they can and are often dangerous. I'm not saying MG will be that dramatic of an issue, but MG has been known to significantly affect things like breathing, not something to be ignored.

When I made the decision to start Imuran I did a lot of research about this topic and found basically 2 conclusions. If you are taking Imuran to avoid an organ transplant rejection your risk of cancer was pretty low, something less than 10% over 20 years. If you were taking Imuran for rheumatoid arthritis or other autoimmune diseases, the risk for 20 years was less than 3% and even then those with pre-existing cancers or other growths made up the higher percentage risks in that group.

Since talking with Erica who has been a great sorce of encourage my thank you), I have been looking for that study and a related study that was performed by the British, published in the journal Lancet. Overall at least for Imuran which has been in use for about 70 years, the long term risk of treating and autoimmune condition is quite low.

Cellcept is fairly new, so the amount of long term studies and data is limited.

While cellcept tends to have lower initial side effects, I chose Imuran as its long term track record in treating chronic autoimmune conditions is very good.



There is one area of concern I am trying to understand with MG and that's how serious MG is. I initially took a good look at the articles and found a quote from a respected medical journal, here is that quote:

http://www.ajns.paans.org/article.php3?id_article=91

"In conclusion, the course of MG is extremely variable. Ocular symptoms may recur at intervals or remain static. Spontaneous remission is common but relapse is the rule. After 5 to 10 years, the disease enters a static phase with only moderate response to treatment and varying degree of residual disability. Spontaneous remission could lasts weeks to years and occurs during the first 3 years. At the final stage, patient becomes bed ridden and severely paralysed. Death from bronchopneumonia and respiratory failure are common"

Is this true?? Will taking an immune suppressant lessen this outcome?

Overall I'm still coming to terms for what MG will mean to me and I'm trying to understand and come to terms with what the real prognosis is

Are there any other ways at looking at the accepted prognosis for a patient with MG?

Thanks to all here for your heartfelt support and great responses, it has been a real blessing getting to know each of you through your stories and posts.

Thanks again

Joe

My only problem with the immunosuppressants is how long they take to work! The steroids are doing far worse things to me, though they do work better. Love.