Wednesday, March 24, 2010

MG and Me

Whoever tells you this disease isn't progressive is full of it. Whoever tells you that there's no pain involved is full of it. I've been taking a medication called CellCept for 8 years now, and it's worked really well. I don't know if my body got acclimated to it or what. Although I WAS off it for 16 months with getting and being pregnant with Jacob. I think maybe that's part of it. Your body changes SO much when you're pregnant. Maybe what worked before won't work again. I don't think I'll ever get to the level of strength I had before having Jacob. I wouldn't change anything, because I can't IMAGINE my life without that child, but it was a huge physical sacrifice from which complete recovery is unlikely.

Plasmapheresis works well, but ideally I should probably have it once a week. Well, that's not practical when you have to drive 280 miles round trip, find someone to watch Jacob, etc. No hospital closer does in it my arm veins (peripherally), so I woud have to get a fistula, port, or quinton cath. to get it anywhere around here. I've had the quinton cath, and it's HORRIBLE. Ports and fistulas can easily get blocked or infected.

An easy solution is to go back up on the prednisone, and have my weight go up even more, have my bones thin even more, and give me more arthritis. But the MG might get better. There's a medication they just started using for MG called Rituxan. It's actually a chemo drug (you don't lose your hair) that they use for luekemia, non-Hodgkins lymphoma and rheumatoid arthritis. There are some crazy side effects though....like if you've ever been exposed to something horrendous (like TB, which I have been, shingles, etc.) it could come back en force. Or you could get some lovely new virus that your body is unable to fight off.

Don't you love my choices? I know, you really wish you could be me! One other option is to stop the CellCept and try Imuran. Been around forever. Kind of the Prozac of autoimmune drugs.

SO anywho. If you are a praying person, please keep me and this situation in your prayers, as well as my family. It's very difficult for Doug to be a full time boss, as well as a caregiver to me and parent to Jacob. Oh, and he's a husband. I completely get when he gets frustrated...I just don't think he gets my end of it sometimes. Like I told him the other day...it's not a lot of fun being me.

5 comments:

bluewhitelife said...

I'll keep you in my prayers! It can be so hard and frustrating when you're trying to find a regimen that works. I will pray for the wisdom of your doctors as well.

mama of 4 said...

(((((((((((hugs mama)))))) We will keep you in our prayers. I hope you can find something that works for you.

Margaret said...

I hate drugs and their side effects. The one I am on has bad side effects to. It totally sucks to always be worried the medication for one thing can cause even more problems.

You are in my thoughts and prayers!

Joanna said...

Praying for wisdom.

amercomes said...

I'm so glad to see someone blogging about MG. I was diagnosed 9 years ago when I was still a teenager. I'm going in for fistula surgery on Monday to make my once weekly plasmapheresis more easily accomplished and hopefully get this awful catheter out of my body! Have you talked to your doctors about methotrexate or Imuran? On once weekly plasmapheresis and Imuran, I've been able to cut my prednisone down to 12.5 mg per day! Keep us posted. Maybe I'll start blogging about my journey, because I've got some serious stories to tell!