Hi Erin,
US$10,000 for a 400 ml bottle which costs a mere US$1,300 over here, I can't believe it!
I' m well stabilized since several months, with only that leg weakness which limits my walking autonomy to approximately 1 hour on flat grounds, just enough for the weekly shopping with my wife…but curiously enough, it doesn' effect my swimming capacities which are at the same level as "before" .We have an outside swimming pool, but it is now a bit too cold to benefit from it!
Due to the steroid side effects, I will have to have eye surgery for cataract next January. I postponed it because the "canadians" (our son, his wife and 3 children) from Montreal will be here for Christmas and New Year.
I' m tapering the steroids each month, presently 20 mg/d, 17 mg next month, then 15…
Good luck with your IVIG's and PICC line…
How long does their efffect last?
Maurice.

Sheesh - $10000 is massive! I thought I'd share my experiences with IVIG too. I didn't have IVIG in Canada and only have had one treatment here in the UK. Here they usually do it on an outpatient basis, but because I live so far away from the hospital I was admitted for four days. I didn't get any benedryl or headache meds - just was given loads of water to drink. Thankfully I didn't experience any headaches or allergies. I can't remember exactly how much it cost over here - I think it was about 600 pounds a bottle. It was covered completely by the National Health Service. YAY!

Sadly IVIG hated me and I couldn't walk for four days after my treatment. I felt okay, just had no response from my muscles. Eventually the weakness passed and I was able to return to my "normal" activities.

Thankfully my medications have no kicked in and things are going great. I'm glad too - I felt guilty about getting the IVIG treatment - I don't own anything worth that much money!

Take care all!
~Kathy

Yeah. It's a joke, right? My meds are through the roof as well - 523.00 for cellcept if I wasn't on insurance. Apparently if you are cash strapped, you should just give up.........We may have to sell our home due to the huge amnt of medical bills I've accumulated in the past year, but am so thankful that we are able to get the meds I need in order to function! Our kids will be heading to college in a few years and we don't need this much space anyway - plus I'm married to a realtor, so he knows where all the good values are right now and I'd love a garden home!

I am so glad to hear you are stable! That is great! Swimming is great exercise! I'd love a pool! Down here in San Antonio, Texas, it is cold maybe 2 months out of the year - maybe when we move, we'll buy a home with a swimming pool!

I bet you are really excited about seeing your family! Aren't they the greatest? I cannot wait to have my precious niece over tomorrow! She is such a joy! My son has had this week off too and we have had sucj a great time! I'd love to have 2 more!

After my IV IG, I usually feel great for 3-4 months! I have asked my neuro about a port in my chest, but he doesn't seem to think I'll need it often enough to really warrant it, though if I have problems like the last time, I'm going to DEMAND it. No more poking around @ dead veins for 2+ hours for me!
All told, since my diagnosis I've had 4 rounds of IV IG and 1 round of plasmaphoresis. (Since March of this year)
We'll see how it goes!!!!

Take care!
Erin

Sorry, Erin, but I think your neuro needs an education. He's not doing you ANY favors by waiting 3-4 months and then doing a huge load of ivig. It is HELL on the kidneys and you run a risk of doing some damage with repeated huge multi-day dosages. MUCH better to do smaller doses once a month or even more often as needed. Your neuro seems to not be very proactive. He's waiting for a big problem and then goes with a big "solution." Consequently, you are left with big "feel good" then "feel really badly" days, and the stress those bring. You need to have treatment that tries to give you a fairly constant level of function--that is the goal. Have a talk with the doctor or find a new one!

The chest port is absolutely the way to go because your veins are being ruined by the constant poking, not to mention the big time scarring of repeated picc lines. Keeping venous access is sooooooo very important as we're looking at 50 or years more of life, and with the other health problems that may or may not come with life other than MG. If our veins are toast and we're in our 60's or 70's and need treatment urgently and they can't access anything...that's a huge problem. Again, talk to your neuro or find one who understands IVIG treatment with MG.

Hope you're feeling good for the holiday today.

Happy Thanksgiving,

Missy

I will talk to my doc as soon as I get back (Dec 6th)! I think it would be great to have IV IG more often (and a lot less each time as well).....Maybe that's why I'm so freaking thirsty after each round of treatment.......

I will also demand the chest port. My hema thinks I need one and what you said made a lot of sense - I'll need these veins sooner of later!!!!

How are you doing? Are the renovations over with? Are you excited about the holidays? Do you have family coming over? How is your daughter?

I've finally finished decorating my home! Finally! My mom should be by shortly to help me do all of the "last minute" decorations!!!!

Happy Holidays!
Erin

Hi,

Yes, the renovations are done...and we love everything. New floors, new appliances, new kitchen sink even! My daughter loves her "girly room."

Thanksgiving is my favorite holiday. We are going to a neighbors to a HUGE bash--lots of food and wine. Otherwise we will be home through the New Year as we don't like leaving when there's the possiblity of bitterly cold weather due to pipes freezing, pets, etc. We do most of our travel in summer/fall.

Take care,

Missy

ps---when you get that port (Neuro shouldn't even be part of that equation. I just got one when the poking got tough.) request a "slim port." Mine is made by Bard. They are TINY and since you are thin, you should be able to use that. Last thing I remember before going out when they put mine in was making SURE they got the slim one. I said, "I don't want a THIRD BOOB!!!!"