I'm not sure what your neuro is waiting for. If not treated, MG progresses. I don't think that it makes sense to make you wait for treatment because your symptoms are too mild. I have a love hate relationship with prednisone however, it does work relatively quickly and can hold you over until a more appropriate choice kicks in. Things like cellcept and imuran take up to 6 months to begin working so many people opt to take the prednisone in the mean time.

I am an advocate for keeping a journal of your symptoms. My theory (however misguided it may be) is that if you take the time to write it down it's important enough to bring to your neuro's attention. I Mean that it's bothersome enough to catch your attention so you should bring it up before it gets any worse. You definitely don't want to wait until you are surprised by a crisis.

My suggestion is to contact your neuro and request that he reconsider starting you on an immunosuppressant. Hopefully he will change his mind.

Good luck to you. I hope you get some help. Never underestimate your symptoms. I would rather you over react than under react.

Aloha,
Angie

Yes, mg can progress very quickly. Mine did.
Be well,

Pat, my symptoms are also mild, but they started at the end of April and have gotten worse despite lots of mestinon and IVIG. These responses have finally convinced me to get on cellcept or imuran. I guess I was still in the bargaining phase. I've been trying to negotiate the diagnosis away. I need to just accept this. I was hoping that my MG would just stop progressing magically. ;(

I waited to take cellcept or prednisone and regretted it. For some reason...for me.....as for all I have seen ...this disease is weird. To me it is like none I have ever seen or definitely ever experience. It seems to me to be the only disease that doesn't get better on its own.
When I first got MG I thought ...if I rest it will pass. I thought like you.....I will be one of the lucky ones who only gets a mild case,
Only to experience a MAJOR crisis and at least 6 weeks in intensive care and years to recover.
I wish I would have done cellcept right away,
Prednisone saved my life(with its complications)
The best treatment for me (hind sight being 20/20) would have been treatment of cellcept from the beginning.
I seriously believe it would have prevented me from crisis. Enjoy cellcept......it could change your next chapter of your life. Currently I am on cellcept, prednisone and mestinon. I am weaning of prednisone.

Prednisone does have bad side effects so I know it's not an easy decision. For me, my MG progressed enough that it was obvious that the best choice was to take it and deal with the side effects. And I did things like restricted my sugar to help out the blood sugar problem, and took calcium supplements. I know, it's a crappy trade off. My MG symptoms progressed from mild to pretty severe in the course of several months, it sounds like your progression hasn't been as much or as severe. But maybe it will only take a small dose of prednisone to make you feel better. If you're having trouble swallowing or breathing at all I'd think you could start immunosuppressants.

There is some evidence that taking steroids can slow down the arrival of generalized MG for those with ocular symptoms only, so I am going to infer that the benefit of taking steroids would be slowing down MG's overall progression. I feel that just taking Mestinon would be gambling with my long term health, and even though I'm not thrilled with having to take my poisons, I do. Taking an immunosuppressant like Imuran is considered to be steroid sparing, in that it reduces your need for higher doses of steroid. Maybe this is an oversimplification, but that's how I look at things.

20 percent of us have an adverse effect when starting prednisone. That is what I am talking about. Prednisone made me worse before better.
I wish I would have started cellcept the day I knew my life was impacted by MG

Hello Pat, great question!!!

Think about having an early diagnosis of MG like a opportunity, you have a chance to help your long term outcome. With MG, which is recognized as progressive, you have the chance to help yourself in the long term.

Many of us struggle with the decision to start the more powerful meds, I know I did when I was diagnosed with Crohns and then had to have surgery to remove part of my intestine, at that point the decision to take an immune suppressant like imuran was an easy one!!

With MG and it being progressive, you have an opportunity to lessen the impact that MG will have in your life over time. To deal with MG or any autoimmune condition the only mainstay treatment is helping the immune system to calm down. When the immune system attacks ourselves that's when we end up with diseases like Myasthnia Gravis, Crohns or rheumatoid arthritis. In each case the immune system is attacking healthy cells within our bodies and causing a disease.

For us to manage, not cure, any of these conditions we have to get out the tools that will get the job done and what's available now in this day and age are meds like prednisone, Imuran, cellcept or other immune suppressants.

Long term prednisone is not a good option as it carries a high risk of developing high blood pressure, it's usually best used for the short term while other meds take effect. The risks of long term usage of prednisone are high blood pressure, cataracts and diabetis among others.

To address the serious issues related to long term usage of steroids, the lower risk option is to look towards medications like Imuran or cellcept which calm the immune system down without the use of a steroid medication. These medications do not stop a immune response when needed, like when you have an infection, but they will slow it down and calm down the harsh response that tends to happen in those that have a autoimmune disease.

Overall if you have the opportunity to start manage MG early on when the symptoms are mild, I would certainly do that. Why wait until its worse and harder to control. No treatment is risk free, but the highest risk treatment available is no treatment at all.

Take care

Joe

Pat, thanks a million for asking this question. I had posted a similar thread recently, and the answers from everyone make it clearer and clearer. I actually took a leap of faith today and accepted a cellcept prescription. We shall see. For some reason (likely denial) it wasn't sinking in that without it My MG will probably keep progressing. I don't want to be an ostrich with my head in the sand, just waiting for something to blindside me and run my butt over.

You are a smart girl.
THe cellcept can take up to a year to work so it is a good thing you started.
I noticed a huge difference and realized it had been about a year.

Sadly the symptoms can sneak up on us. I was having trouble swallowing and went to my general practitioner and asked to start Prednisone. He did and my MG specialist said my MG was out of control and started me on IVIG and CellCept. Other doctors have told me that the CellCept will help me reduce the need for Prednisone.

Watch the symptoms from day to day they may change but you may not notice. The IVIG helped a lot.

Thanks for this post Pat. I am only on Mestinon as of this May. I really believe I need to be on cellcept soon. My rheumatologist believes so too but wants my neuro to prescribe because my joints are okay for now with my lupus drug. Well, only 3 weeks to go till my next appointment and I'll see what happens. I will keep in touch with you and Erica since we are pretty close in our stages it seems.

Thank you Ann too, everyone's personal experience carries a lot of weight with me.
Hugs Pat~Marina

I have come out of 25 years of remission and resisted taking anything but mestinon. My neuro said ok, but felt that if I started cellcept while my symptoms were manageable maybe I could get back to remission. He also said that over time if more aggressive measures weren't taken there could be long term damage. So at that point I was to afraid not to take the cellcept.

I so appreciate everyone's replies! I need to discuss all of this with my neurologist at my next appointment. I'm still recovering from a recent bout of pneumonia and am amazed at how long it is taking to feel better. I've dealt with a number of bouts of bronchitis, but this is the first time I've been diagnosed with pneumonia. It was a little scary and made me wonder whether MG was involved at all. I have an appointment with my pulmonologist next Monday and I think I'll ask him what he thinks about immunosuppressants as well.
Thanks and hugs to all of you!
Pat

Just a quick update. Not too surprising, my pulmonologist said that he could not support me trying immunosuppressants until December at the earliest. I have mild asthma that typically only rears its ugly head when I pick up a virus. I had bronchitis last April and am still coughing a bit after my recent bout of pneumonia. He said that it could take three months for my lungs to completely recover, and then there will likely be some scarring from the pneumonia. So, I will put off talking to my neurologist about immunosuppressants until my next appointment in November and try to pay attention to my symptoms in the meantime. Thanks so much for your advice and support!