Experiences with IVIG [Archive] - NeuroTalk Communities

willyarty

04-18-2007, 02:36 PM

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:D . 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 :mad: 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!! :D

loisba

04-19-2007, 12:18 PM

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

Gabe

04-22-2007, 09:11 PM

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

Gabe

04-22-2007, 09:13 PM

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

loisba

04-23-2007, 09:20 PM

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,

Nicknerd

05-29-2009, 06:30 PM

TxSimon

05-29-2009, 06:46 PM

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

erinhermes

05-30-2009, 12:41 AM

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!:D
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:D

erinhermes

05-30-2009, 12:54 AM

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!:D

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.......!:D

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:D

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

Joanmarie63

05-30-2009, 10:01 AM

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.

Tbarney

05-31-2009, 03:12 PM

Erin how come you do IVIG vs. Plasma Exchange? My dr. is thinking about having me do a plasma exchange.

erinhermes

05-31-2009, 07:33 PM

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

Erin how come you do IVIG vs. Plasma Exchange? My dr. is thinking about having me do a plasma exchange.

Nicknerd

06-01-2009, 12:01 AM

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!:)

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

erinhermes

06-01-2009, 05:07 PM

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

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!:)

leaningin

06-02-2009, 12:59 PM

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.

Nicknerd

06-02-2009, 01:19 PM

That is really encouraging....Thanks so much for the replies! :)

Tbarney

06-02-2009, 11:08 PM

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?

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

TxSimon

06-02-2009, 11:48 PM

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?

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

erinhermes

06-03-2009, 11:26 PM

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

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?

Nicknerd

06-06-2009, 02:28 AM

So I had my two IViG treatments Wednesday and Thursday...I passed out both days during the procedure due to the benedryl (that stuff is really strong!). Anyway, the first day, I was only asleep for 2.5 hours, so I was able to hydrate well during the procedure, but yesterday, I was asleep for about 4-hours. When I woke up, my hands were really swollen (which isn't uncommon for me for them to be a bit swollen but they were REALLY swollen)...I felt really groggy and swollen all over...Like my body was a sponge filled with the stuff...Anyway, today I woke up with an excruciating headache-the mother of all headaches...I have never had a headache like this before...Anyway, I ended up going to the hospital...They wanted me to do a catscan, but I figured that maybe the headache was a normal side-effect of the treatment (the doc. only wanted to do the scan as a precaution, he felt that my headache wasn't too serious), although I am still a bit worried about it....I feel sick...My left eye is swollen and red...i feel a bit nauseous...I declined the scan since they said that there's a lot of radiation involved and I already have a thymoma and a tendency to have lumpy breasts (fibroadenoma, cysts)...

How many others have developed a really bad headache from the treatments? I don't really feel different, almost worse...I have a feeling that plasma is better for me...I guess I will have to see since I know it can take a few days to work....

It's funny how this treatment works...For people who don't have an immune system, it provides one...For people have an immune system, but one who doesn't like their own body (lol), it seems to suppress it...I feel so fluish and not much better!

Anyway, I hope my headache goes away tomorrow morning...I'm scared of what I will find when I wake up tomorrow!:eek:

Nicky

xmas 25

06-06-2009, 10:48 AM

hope you're feeling a bit better if not alot!!:grouphug:

Pat 110

06-06-2009, 11:10 AM

Hi Nicky,

I'm so sorry you feel so terrible.:( I've never had that treatment but many here have as you know. I'm sure you'll get some replies from them soon. Were you told you could possibly get these side effects? I sure hope you are feeling better soon. Hang in there! ;)

Take care,
Pat

Nicknerd

06-06-2009, 01:28 PM

Oh man...I still have the headache....Thanks for the well-wishes, guys:grouphug:....I wish the nurses had woken me up to drink water while I was asleep....Argh! This headache is brutal :(

Tbarney

06-06-2009, 02:19 PM

Nicky, sorry for the pain you are going through. I hope you start feelling better soon.

erinhermes

06-06-2009, 02:24 PM

I HATE - HATE benadryl! I REFUSE to take it b/c it knocks me OUT and makes me feel drunk as a skunk. :mad:
I wonder why they don't give you fluids (via IV) while you have your IV IG........you can refuse the benadryl if you so choose. I never, ever take my pre-meds. EVER! I have found that taking them makes me feel worse than than anything else, and the nurses understand.
As for the headaches; I've never had one after IV IG - don;t know why. I am so sorry to hear you aren't feeling well and are swollen. The swelling IS one of the side effects of IV IG - so I've heard. I also swell up after it - that's why I drink fluids until I'm ready to "pop" the night b/4! LOL!
THe plasma exchange may work better for you. It is more invasive, but it does do the trick.
Hope you feel better soon!
Big, big hugs!
Erin:D

Oh man...I still have the headache....Thanks for the well-wishes, guys:grouphug:....I wish the nurses had woken me up to drink water while I was asleep....Argh! This headache is brutal :(