Let's get a thread going about experiences with IVIG. Have you ever had it, did it help, bad experiences, how often do you take it, for how long is it given. I must confess I know next to nothing about it myself, but a friend is needing info for his wife's treatment. Besides which, this will help to build up our cache of useful information.
Hugs,

Hello loisba: Just read you query. I have had MG since 9/2006 at age (69 going on 76) 69. I'm COPD but have not had any lung function problems to date . I have a number of serious medical problems going back over 36 years. I have undergone 4 rounds of IVIG and 4 rounds of plasma exchange. I am currently on a long-term steroid bolis which will end 5/13. Hopefully it will have done the trick. Plasma exchange is a quick fix if it works. IVIG is really for the long haul and most likely is used along with oral medicine like Mestinon and/or Cellcept-I take both (Cellcept lowers the body's ability to fight off infection so care must be excercised). Cellcept is used to diminish the production of antibodies in order to facilitate the Mestinon's ability to interfere with the anti-bodies attack on the nerve/muscle junction. My first go at plasma exchange occured just before I had surgery to repair 6 or the 7 vertebrae in my neck. As I was facing the distinct possibility of paralysis I elected the plasma exchange in the hope it would get me through the operation. I came through the surgery ok, but my body, being so tramatised for so long, didn't respond well enough and I had to be readmitted for a 9 day eval course. I'm currently home, doing well though weak, and have a good appetite. Quality of life is very important and figures in my decisions regarding medical intervention. Also being a Christian has a deep effect on my views regarding the short-term and long-term future. My experience with IVIG is not typical. Most patients respond well and recover ok all other things taken together. Age and health play an important role in recovery. Well, I hope my info is of use despite my ramblings. God Bless!!

Thanks, Willyarty, this is the sort of info my friend needs to help him understand the treatment they are wanting to give his wife. If any of you have had negative experiences with IVIG, please post those, also, so my friend can get a good rounded out feel for the pros and cons. Like I said in my first post, I know virtually nothing about IVIG myself.
Hugs

Hi Lois...
I have been diagnosed with Myasthenia Gravis officially for about 1 1/2 years but had been diagnosed and undiagnosed for a few years before that. I had my thymus gland removed last March and had IVIg for about two months before my surgery. I continue yo get IVIG every 2-3 weeks now. IVIg has been wonderful as far as giving me back my strength. I feel almost "normal" a few days after I get it. I have had a few issues with insurance and had to take a 6 week break mid winter and that was not fun.

The process takes me about 6 hours. I go to an infusion center at one of the hospitals and once I get there they order the mixture from the pharmacy - that takes about an hour and then they start the IV. I used to get it over 4 hours but now get it over 5 hours. The slower it goes the less side effects I get. They always give me Benadryl and Tylenol so that there is a lower likelihood of having a reaction. I have had at least 30 treatments and had one bad reaction...had a headache that lasted about a week. I have learned to be very well hydrated when I go in - I start drinking tons of water several days beforehand and drink lots of water in the days right after.

I recently had a port put in because it is difficult on your veins and it looks like I will be getting it for a while because it works. I take 150mg of Imuran daily and Mestinon. The combination of the three have given me the ability to plug through each day a little stronger. If your friend has any specific questions I would be happy to talk with them. If you want my number send me a private message and I can give it to you.
Gabrielle

Hi again,
I forgot to say that I feel crummy the night of the treatment - get chills and sweats and have a slight headache that lasts into the next day -feels a little like the flu but in the grand scheme of things, I think it is worth feeling great for a few weeks.
Gabe

Gabe, thanks so much for this. I hope my friend is keeping up with this thread so that he can discuss all of this with his wife.
His needs aside, this is the sort of information we need to post so as to build up our database.
Hugs,

Okay, this might sound really strange...But what are the chances of contracting Creutzfeld-Jakob disease (like mad cow's) from IViG treatments? Does anyone know? I'm starting IViG this next Wed., and am considering cancelling it just because the thought of contracting this disease is terrifying!

I know I'm being a bit paranoid, but the idea of having to have a blood transfusion has always freaked me out...I had plasma exchanges, but from what I understand, there is no risk of contracting any diseases through this process...

Please let me know!

Thanks

Nicky

Nicky,
I think the chance are slim to none and catching any diseases with IVIG. From all that I have read, it is safer than any blood transfusions. Hope this calms your fears.


As for IVIG treatments, I have been having them since Oct 08. I took 5 the first month and 2 treatments every 4 weeks since then. The first five were hard, as I had a reaction the next week after the treatments. The treatments absorb the fluids from you body, so being well hydrated is the key. But sometimes, in my case had to be hydraded by IV for one afternoon to get my fluids back after the 5 treatments initially. The two days of treatments every four weeks has not been bad. I have had to deal with headaches and nausea for a day or so even with the pretreatments for these before the IVIG treatments, but in the whole scheme of feeling better for at least 3 weeks, it is worth it. I can tell when I need the IVIG though, as I start to lose the strength after 3 weeks or so. Only once did the treatment last for only a few days. I guess my body just didn't feel like cooperating that month! I take Mestinon and Cellcept daily and get the treatments, as I said two days every 4 weeks. This combination has worked for me. Hope this helps.
Simon

Hi Lois! I looooooooove IV IG!
My first experience scared the heck out of me, I was in the ICU with people trying to put tubes in every part of my body - so the PICC line was a pain in the butt!
That being said, I LOVE IV IG! It literally saved my life! Before it I was unable to to anything - even swallow ice chips! Once the drs had that going full speed in my veins I felt AMAZING!
I go in every month for another round of it......they have slowed it down to 144 mL an hour - I was up to 360, but my neuro was worried about kidney damage down the road.
I have never had bad side effects - ever! I don't even take the obligatory Tylenol or Benadryl b/c I do not need them! I do take my hosp mug and drink all day long! All day! In fact, that may be why I've gained so much weight - I drink juice, tea or oj all day long........
If your friend can tolerate IV IG then they are going to love it! I am so grateful to be able to get as often as I do!
Big hugs
Erin

Hi Nick! Don't worry! It is pooled plasma from over 1000 donors - all screened for everything!

If your body tolerates it you will love it! I call it my "go-go" juice or "liquid gold" b/c it is that good!

You will feel so strong after it!

The first time is alwas the hardest, but people have gone into remission after IV IG or the plasma exchange - I was told that by some of the nurses @ the hosp.......!

Just relax, take a deep breath and let them do their thing. They are going to take a sonar/doppler to find out which vein is best for the line (if they do a PICC) and then give you a shot to numb your arm - warning (!) it does hurt a bit, then they place the line all the way up your arm to just above your heart - it should no longer than 15 min - mine can place it in 5 or less now - even with my horrible veins. Then they secure everything and start the IV IG. If you are afraid of needles I highly recommend the PICC line, b/c you will have blood work done @ the hosp and I just can't take being poked over and over.......

I hope this has helped a bit. Please don't panic. It will only make you feel worse. Your dr wouldn't recommend this if (s)he didn't think it would help.

Take care and let us all know how you are!
Big hugs!
Erin