[Donna J McCauley]

Have you try asking your neuro doctor? I was so worried about it. All I know is that he must have me in some program that pays for it.  I DON’T KNOW IF IT BECAUSE I WAS TOLD I COULDN’T WORK ANY MORE, AND  I WAS TOLD TO GO ON DISABLITY.  i HAD NO PROBLEMS WITH GETTING ON IT, BUT I KNOW IT DEPENDS ON YOUR DIAGNOSIS.  iF YOUR REGULAR NEURO DOCTOR DOESN’T KNOW , KEEP SEARCHING.  GOOD LUCK.

[Donna J McCauley]

Hi to all MG PEOPLE.  L ALSO FEEL THAT PEOPLE JUST DON’T UNDERSTAND.  I am lucky that  my career was nursing, most of my close friends are or was in the medical field. But those that aren’t just don’t get it that i can only walk 2-3 blocks at a time. The last time i was with them. they said i should come along, even thou i remind them that i can’t walk fast if i want to last more then 2-3 blocks. Well that didn’t last  long.  I sat down on the bench and told them i’d meet them at a stop that they’ll be coming back too. Of coarse i had some looks, but i did meet them at that spot. I did try to explain to them, that it’s like running a marathon without prepping for it. No matter how much i try to get better, it doesn’t work that way.  I get twice as frustrated that i can’t ,because before this all happened, I’d walk 10 miles a day without trying.  I ask them what’s the hardest thing you try to do, and just can’t. Well i tell that’s my life everyday.  I can only do so much physical activity and i’m all worn out.  I’m presently  on the IV rituximab, it seems to work good for 2 weeks then i start feeling weak.  If you are on this please tell me if it’s helping you.  It seems every year i try a different med, because it doesn’t really work. It’s sad that it takes a year to know it the drug is helping or not. God bless all of you, like me i try to hang in there.

[Donna J McCauley]

I’ve been on predisone for some time now d/t my MG.  I started on 20 mgs, presently on on 5mg. But i gained weight about a few months after  i was on it. With the predisone, i come to a conclusion, if i can maintain my weight without gaining any more then i already have, I’m not getting to mad at myself.  I tried to take a walk today, 10 blocks and i was exhausted! I do keep moving as much as i can.  I know i”ll have a bad day because i walked to far. But that’s part of the ride.  Try to find people in your life that is positive and know what your going through.  I know i can get get myself pretty far in the dumps, when i can’t even pick up my 6 month old grandchild.  I guess i tell myself that i’m blessed that i’m here, and still able to interact with them. My positive friends are always there to listen. Hope that you are able to find someone that will keep your spirits up, and sometimes just listen.

Number #20711 you really need to get a better attitude, keep your negative attitude to yourself of get some help somewhere!

[Donna J McCauley]

Hi,  I’m on rituximab for several months now. My doctor had to start me on a lower dose due to , i am so sensitive to everything. I’ve had MG since 2016. I started with the first ivig med and mestinon. Eventually i had allergic reactions. I went through the gammit of all the oral drugs, and either my labs went to high or i became allergic to them or they didn’t work for me.  My doctor had started me on predisone some time ago,due to drug reactions of the past meds. It helps, but i don’t like the side effect of weight gain.  Now with the rituximab, he has been decreasing my predisone and slowly increasing the rituximab. I do feel better on it, i do have lower body weakness.  It is getting better. I couldn’t go up step without pulling myself up them. I started with getting better with steps. I do have to watch how much physical activity i do.  Before this i was an  athletic type, it took me some time to slow down. I still try to keep my walking in , all thou it’s only blocks instead of miles.                                                                                                                                                                                   I’m down to 7.5 mg of predisone, and get the rituximab every 3 weeks now.( I started on every 2 weeks) The only reaction i’ve had from it is a itchy rash, from my chin down to my collar bone. I manage it with either benadryl  or just cold cloths to the itchy area. I can’t always take benadryl due to the sleepiness it causes.  I  usually get the reaction the next morning with the rash.  It feels like a long road, but hang in there. My doctor is very up front with me, so i do already know what the next step MIGHT BE. I feel if you keep a good repor with your doctor, you can research ahead and ask the questions you feel necessary to ask. I make a little notebook for questions i need to ask. I feel that way, i’m more in charge of my health.                                                                                                               I’m trying my best to keep to doctor orders of slowing down, I’m 65, and i imagine it is very difficult for those that have children or still an age of activity, or grandchildren.  Good luck to those that are thinking about this medication, or are starting it.  Also , it helps being in a support group. I can’t always get to my meeting, but i can call the person that is in charge of the group, and she can either direct me to some information, or just talk, at times sometimes that alone can help.

take care and god bless.