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Sorry I can't help you here as I have not had it done but I know many people here will be able to help.
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Erin how come you do IVIG vs. Plasma Exchange? My dr. is thinking about having me do a plasma exchange.
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Hi Tbarney!
Hello again! I've had them BOTH but I seem to respond better to the IV IG, plus I have to admit that I really hate the feeling of having them place the line in my neck.........yuck! I have a high platelet count (common with people who suffer from MG) so they really have to DIG hard to break through the old scar tissue - in fact, the last time I had it done I cussed out the dr while he was placing the line - it hurt like heck!:mad: Then the genius nicked a nerve for the 2nd time - AUGH!
Plus, when I have IV IG I can go HOME @ night. The plasma exchange means I'm chained to the hosp for an entire week. I really like to get home to my fellas. :D Have you had IV IG b/4? The plasma exchange? Which do you prefer? Does the plasma exchange make you feel stronger? Can't wait to hear from you! Erin:D Quote:
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Hi Erin,
When you have plasma exchanges, you've had to stay in the hospital for a week? That's so odd! Also, why do they always place the line in your neck? They put mine in my hands/arms...Also, I get to go home as soon as the procedure is done... I'm sorta excited about having the IViG done, just because I have a feeling that it's going to work well...I'm just a bit scared of the side effects.....I'm going to drink tons of water in prep... Are there any other things I should do in prep. for IViG? Thanks, guys!:) Quote:
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Hi Nick!
Hey Nick! I have no idea why they place the line in my neck - to be honest, I thought it was standard procedure......I'm gonna ask my neuro about that one when I see him. He's in BIG trouble! LOL!
They do make me stay in cuz the line is placed in my jugular and it is HUGE - the Quinton cath - 3 piggies on it - and the risk of infection goes waaaay up - not to mention the thought of it accidentally coming out *getting faint just thinking about it*.........:eek: Sicne you've had the plasma exchange, the IV IG will be a piece of cake! The drs will prolly make you take some tylenol and benadryl before they start. They will check you every 15 min or so and then bump up your flow. I think in my case I was so sick that my drs are extra cautious. When I was first dx'ed I was really, really bad and after a few good days in the ICU, I took a turn for the worse....really scary time for me! All in the past, though!:D How are you feeling today? Are you feeling better? Big, big hugs! Erin Quote:
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Ivig
I had IVIG first in the ICU. When I was admitted I could not chew, swallow or hold my head up. I was still breathing on my own but my diaphram was really weak. The IVIG started to help almost immediately. Within 4 days I was able to eat regular food, hold my head up and swallow liquids without choking.
After I was discharged from the hospital, it was a few weeks later and the great affects of the IVIG began to wear off. I started to feel crummy again. So I got the insurance company to let me have outpatient IVIG. It took 4 days at the Infusion Center. THe first day took 12 hours because they dripped it in really slow to make sure I didn't have any reaction. The next three days it only took about 7 hours. I felt great afterward and so far the good affect is holding. I am so grateful for IVIG. Its like a miracle. |
That is really encouraging....Thanks so much for the replies! :)
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I really don't know enough about either procedure. I stumbled across something before that said IVIG was done through your neck.
How often do people have plasma exchanges? How often do people have IVIG? What are the costs? How are insurance companies for covering these? Quote:
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I can't speak for plasma exchanges, but I have been receiving IVIG since Oct 08 and have had two treatments once every 4 weeks since then. The cost for IVIG that is billed to my insurance is $20,000 per treatment. Depending on insurance company cooperation, but mine was over a month just to be treated with the first treatments. My neuro had to write 3 letters to get approval for my IVIG. This is my only experience, but hope this helps you. Also, my IVIG is done in a vein either in my arm or I prefer my vein in my hand.....big veins....easier stick for the infusion nurse. Hope this helps. Simon |
Hi Tbarney!
Hello again! IV IG is usually done through the hand or groin. It requires a BIG needle cuz' it is so thick and gooey, that's why I went with the PICC line - plus, my veins "blow" quite often since the roids kicked in.
IV IG is pooled plasma from about 1000 donors. It "masks" your symptoms for about 3-4 weeks. The cost is approx 10,000-15,000 per bottle. I get mine monthly for a while - 5 days @ 500 mL. It takes about 4-8 hours, depending on the flow rate. The plasma exchange (for me) is much harder. My line is placed in my jugular - after getting a lidocaine shot to "numb" the area - does not work!:mad: Not for me @ least! Then when the line is placed, you are hooked up to this enormous machine that recirculates the blood in your body - pulling the antibodies out. It takes about 45 min- 1 hr. It costs the same as the IV IG and (in my case) you have to stay in the hospital the entire time - 5 days - same as the IV IG. Of the 2, I much prefer the IV IG. It is much less invasive and (bonus) I get to go HOME every night!:D Both last around 3-4 weeks. Some people get them every month. Others get them done as "pick me ups" and are much less frequent.:D In any event, they both make you feel amazing. :D To date, I've had @ least 15 series of IV IG and 2 series of the plasma exchange. Once I had them back to back. After that, I was just tired........:( My MG is pretty bad and I need the IV IG therapy more often than most. I am so thankful to be able to get it! I am lucky in the sense that my neuro fights tooth and nail to make sure I am able to get it as often as needed! God has truly blessed me with an amazing neuro. Hope this helps a bit. Sounds like your neuro wants to get you "back on track" - and these therapies should help quite a bit! Big hugs! Erin Quote:
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