I am still learning about this disease and everything that goes along with it. I want to know, DO I HAVE AN IMMUNE SYSTEM?

I was diagnosed with generalized MG in Nov. 08. I was started on Imuran 100 mg at that time. In Jan. 09 I had my first crisis and was started on prednisone. Since then I have had a second crisis and my dose has gone up and down. Right now I am at 45mg of pred a day.

I had a thymectomy in Feb. 09. I have had a couple of IVIG treatments.

In Sept. I got a sore throat/ cough that brought back the shortness of breath that I had not experienced since before the surgery. The breathing got worse so I went into the hospital for IVIG and am SLOWLY improving.

I am fearful of getting sick because if a sore throat can take me down, imagine what a flu could do.

With the thymectomy and the imuran and prednisone do I have anything left to fight off illness?

Thanks for listening. ~ Melanie

As your Dr should have told you, prednisone weakens your immune system and you need to take precautions around sick people and public areas, even more so now with the flu season. That is one of the main reasons my Dr refuses to use prednisone with me {or any of his patients} unless nothing else works. As for the IVIG, I don't know but Erin should know more about that.

I hope you get to being stronger soon

Hi honey!

I am so sorry to hear you aren't feeling all that hot right now.....as for your question.....it's a vicious cycle: we have to have certain meds to suppress our system then we are left rather "defenseless"......

If we didn't have super strong, pain in the butt immune systems then we wouldn't need the meds - can you say Catch-22?

I don't know much about MG, but it does sound like you need a "boost" right now - esp with it being cold/flu season.....what does your dr say?

THis time of year scares the bejeebies out of me - I am so afraid to catch anything that I have been housebound for a while - not such a great option.

Hopefully Annie, Brennan, Maurice, Becky or one of the super smart people on this board will be able to fully answer your question.

I do know this - be extra, super cautious right now; wash your hands all the time, keep a humidifier going (I saw that humidity can kill certain viruses), keep that lysol and hand sanitizer handy - just in case!

Love,
Erin

Thanks Erin & Joan, I am being very cautious about the cold/flu season. I do plan to get the flu shot but it is not available in my area until next month. I am in the process of being moved to another neurologist who specializes in neruomuscular diseases. Yes!!
The new neurologist has said that he would be willing to do IVIG on a schedule but we need to discuss it further. I am also in the process of a slow taper off of prednisone.

Hey Melanie,

I'm so gald you have a new neurologist. Maybe the IVIG is just what you need to feel better. I seem to get sick so easily since I've had MG. I still haven't decided on getting the N1H1 vaccine because I got so sick one year after getting a regular flu shot. It's not available in my area either so I'll wait and see what others here are going to do. Take care and I wish the best.

Hugs,
Pat

Thanks Pat. I am thinking I will get the H1N1 shot. I normally get the flu shot every year. Prior to getting MG I was very healthy and never really got sick. Hope you are feeling strong. Take care ~ Melanie

Melanie, You do still have an immune system but it's an uppity one.

Seriously, it's suppressed. That's why your doctors need to check on blood levels from time to time (red & white blood cells, etc.).

You can do other things to make it happy like good food, sleep, no stress, etc.

You'd have to have chemo for your immune system to dwindle down to almost nothing.

I know it sucks. And it can be scary. BUT you did the right thing by seeking out some help. That's all you can do. Get help immediately when you start feeling sick.

Annie

Thanks for the info Annie! Hope that you are feeling strong. Take care ~ Melanie

Check with your neuro about getting flu and H1N1 shots. My neuro says I cannot have one because of my suppressed immune system. I also take CellCept.