Hi there,

I'm new to the board (just came across the site) and am so glad I landed here. I was diagnosed with severe MG after becoming almost completely paralyzed Christmas day 2010. It actually took the doctors at Yale 10 days to diagnose me, even though I had textbook symptoms leading up to hospitalization, but that's another story.

After a long recovery and a few more hospitalizations, I finally weaned from evil prednisone. I'm now sustaining on Mestanon and iViG every four weeks. I'm responding quite well to the iViG except that after each treatment I get a sampler platter of every virus in town. Again, another story.

I write today with a question. My primary and near both agree I should go off of Paxil (originally went on for ortho hypotension & continued for anxiety). Instead, they are recommending Cymbalta. So, at long last my question:

Have any MG patients had experience on cymbalta, positive or negative?

I'm scared to introduce something new but am willing to try it if it's the better option. Prescription sitting in wallet. I'm sitting in bed pondering decision.

Any advise is appreciated. Again, I'm very happy to have found an online forum and hope and expect to remain active.

Best regards,
Emmay
(40 year old female with Myasthenia Gravis)

Correction - my primary and NEUROLOGIST recommended (damn iPhone spell check) and also ... diagnosed Christmas 2009. Sorry about that.

Hi there. Good grief you have had a time of it. I find I cant not note my experience here tho I am well aware we are all individual. In that lite I will say one of my fav sites to get others reports on meds is askapatient.com. It is very detail and honest in terms of the patient themselves report.

For me Paxil is an awful scary drug that you can only get the truth on now that people have had so much abd happen from it. I know you are going off it and that is one of the 2 biggest problems I had with it. I would just caution you to be prepared and gentle around how you do. I tried to get off it over the span of 2 years. every time I would get down to a certain point I would have such symptoms I couldnt take it. I asked my shink for help but he refused. When I finally HAD to go off it in 2005 because I had started to become chemcially sensitive and was reacting to all the valium it took to take the Paxil at all I got off it first so I could stop the valium. I had to set aside a month knowing I would be miserable and have severe withddrawal. It is not uncommon for people with Paxil withdrawal to end up in ER.

When I just tried to switch to somethiing else with the help of my shrink from the Paxil (Paxil to serzone) I was told to do it in a week. I did end up in ER. I didnt know what was happening to me as this was years ago, maybe 2001 and there wasnt all the public data back then. I had no clue what he told me to do could make me so crazy, vomiting, head-exploding in pain sick. My neighbor called 911 to get me to hosp. I crawled to his door.

Since I found out that I have chronic vitamin D problems and find ways to keep it from bottoming out, I dont have the need for antidepressants. My feeling is that there are alot of us that dont know we are chronically low and pretty darn low or even marginally low and how good we would feel if we had plenty in us.

I should ad that I have talked here of being sensitive to drugs but my experience with Paxil preceded that and is not unique I have found since reports of Paxil problems have been more reported.

Annie59

Hi and welcome (sorry you have to be here, but you came to the right place!) I have had mg for about 11 years and went on disability about 4 months ago. I have been on Zoloft for about a year and haven't had any bad side affects from it. I do think it helps keep me on a more even keel ( though there are days when nothing helps)

Good luck with your decision!

Hi Emmay and welcome. I agree, this site is very helpful! I wish I would have found it years ago.
I was on Paxil a few years ago. When I was getting off of it, I found a site that recommended taking benadryl when the withdrawl symptoms became really bad. It did help. I just broke some Paxil pills small and took less and less and less. Took a few months for me, but I was not having any withdrawl symptoms I could not handle.
My duaghter was on cymbalta. She was just put on Pristiq and it has WAY less side effects. She doing alot better, it is in the same class, but WAY less side effects. Even her weight is going down.
I hope whatever you decide works well for you. And I hope you never hesistate to let the doctors know if somehting is not working for you. You are the one who has to live with the symptoms. There are so many new ones. Now my daughter only allows the psychiatrist to prescribe her medications. The doctors seem to not listen. We are very happy with the way she is doing on the Pristiq.
If you are not comfortable with their choice, maybe talk to someone in that field and ask thier advice with your symptoms. You are allowed to take all the time you need and make your decisions. You need to feel comfortable taking.. anything.
Take care, Eileen

I would try the Dinet forum as although they haven't got MG you need to be mindful of any antidepressants effect on your OI as well as your MG.

A lot of people with OI and POTS suffer with anxiety due to the body sending out adrenaline and the like at the wrong times. The Dinet site if you aren't aware of it is a good place to ask questions - just like this one!

This is the link http://forums.dinet.org/

I hope this helps

Rach

Excellent thought Rach! Annie59

Oh yes like Eileen said I had started by slowly going down in dose to 5mg tho given the coating I couldnt go father than that 5mg which 1/2 of 10mg pill. I tried to do the 5mg every other say which may or may not have been a good idea. As I said I asked my shrink to help me taper off , any tips or ways to handle the withdrawal and was refused. I also tried to reseach it. There is so much more help available now. I wonder what benedryl would do? Since my Sjogrens was already getting worse I had already had to stop all forms of benedryl type drugs as they dry so badly and I couldnt take a small enough liquid dose any more.

I have heard it explained as flu-like symptoms by some.

Annie59

I take Cymbalta and don't notice any issues.

I agree with what Annie said above - many people with AutoImmune disorders are severely low on Vitamin D. You might want to ask your doctor to run a few blood tests on you to test your Vitamin/Mineral levels, and also to test you for Celiac Disease.

Many people with MG have issues with gluten (whether or not they test positive for Celiac), and find that many other problems disappear when they eliminate it from their diet.

I was diagnosed with CD first, the MG came later. When I went gluten-free, a lot of my depression issues went away. (I still take Prozac, but it's a relatively low dosage, and I haven't had any side effects to speak of) It has to do with absorption of nutrients - if your body isn't absorbing everything you are taking in, it WILL take what it needs from wherever it can find it.

There's lots of info about Celiac and gluten-free eating on the web.