Hi could someone please explain the difference between these two treatments for me? My Dr is giving me a trial of IVIG, this will be my 1st proactive treatment despite being I’ll for 6 years, I can’t have steroids as the medication I’m on (pregablin and a 25mg fentanyl patch)have caused me a big weight gain.
IVIG not sure it helped me still getting 20 mgs 3 times a week, can’t take take steroids. I have been referred to see a new Dr for Plasma exchange, but wait now a week for referral
Cair,
IVIG is intravenous (method of delivery) imuno globulin. They just put an iv port in an arm vein and hang a bag and let it drip in. Google IVIG for a more accurate definition of exactly what it is than I can give.
Plasma exchange, or pheresis, is just that: an exchange of your plasma along with all of the bad antibodies that are causing trouble.
Delivery us a little more complicated…the process is very similar to kidney dialysis. A two way port is put in, your blood is taken out and run through a centrifuge which separates the red blood from the plasma. The red blood is mixed with fresh, bottled plasma and returned to you through the other side of the two-way port.
Both processes take a couple of hours. And in both cases all you do is lay there and read,watch tv , or sleep.
IVIG can cause a little discomfort such as headache, which can largely be prevented by drinking lots of water beforehand and by slowing the rate of drip.
Plasma exchange can make you sleepy. I usually drifted off and dozed.
Plasma exchange was a life saver for me after IVIG had no effect, although statistically, I think more of us show positive effects from IVIG.
I also think plasma exchange does not need to be repeated periodically as does IVIG. At least that’s true for me. One series of 7 PE over 14 days two years ago and I am still showing nerve regeneration and increasing strength and reflexes so more PE is apparently not warranted.
Thankyou country girl & Jeff for your replies! I’m having 130mg of ivig over 3 days as an in patient once a month for 3 months. My Neurologist has never even mentioned the plasma exchange yo me I read about it on here, I’m not sure if it’s used in the treatment of CIDP over here in the UK.
Thankyou mdolich for your reply, I hope you’re having a good as possible day!
mdolich said:
IVIG - Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgG antibodies extracted from the plasma of over one thousand blood donors. IVIG’s effects last between 2 weeks and 3 months. It is used in various neurological disorder/diseases, both autoimmune and immunodeficiency. GBS & CIDP are two types of disorder/diseases that IVIG therapy is used for.
Plasmapheresis - Plasma exchange, also known as plasmapheresis, is a way to “clean” your blood. It works sort of like kidney dialysis. During the treatment, plasma – the liquid part of your blood – gets replaced with plasma from a donor or with a plasma substitute. People with some forms of neurological disorder/diseases like GBS, CIDP, MS etc… use plasma exchange to manage sudden, severe attacks, sometimes called relapses or flare-ups. Their plasma could have certain proteins that are attacking their own body. When you take out the plasma, you get rid of those proteins, and symptoms may get better.
I get IVIG every three weeks and have been since 2006, and will for the rest of my life. Are far as pain meds go, I’m on 3600mg (1200mg 3x day) of Gabapentin, 300mg (100mg 3x day) of Lyric (pregabalin),and I also have Lidocaine patches for my back seeing I have bad burning sensation between my shoulder blades. I also cut one up into small patches for the tops of my feet because they also having burning sensation sometimes.
Hope this helps, Good Luck, ““Stay Strong and keep a Positive Attitude””
I would just like to share that I am on IVIG now for almost two years and I have never felt any improvement or any difference in any way. I have also never had any side effects. I have just learned in talking with another Neurologist and was told that IVIG can cause severe Kidney damage and that if it is not helping me in any way that I should consider not having it any longer. I am seriously thinking about this. Has anyone ever heard of this ?
I got hammered with CIDP (or possibly Guilliam Barre) in April, with some small signs of trouble since Thanksgiving. I took the full treatment with IVIG with no apparent effect --two months ago I could not walk 4 feet without lurching, lightheadedness etc. or more than 50 yards in my yard with sticks. Could not do any house work etc. Next my good doctor put me on solumedrol, a kind of prednizone. I have been getting much better, can walk around house without lurching or sticks, balance better, hands less fuzzy can do more and more chores and type better. I can "hike" for a half hour or hour with sticks and some rest. Do not know if its the solumedrol or I am just slowly recovering, but there is hope. Of course the future is very uncertain but day by day or at least week by week I get better. I will see "the nation's leading expert on G-B -CIDP " next week in a far off city so we shall see what he has to say. I made the appointment months ago when I was at the bottom of my disease so this will be a different sort of meeting....Meanwhile my local doctor in Kalispel Montana is excellent. He wanted me to get a second opinion. I will report on all this. I am a retired scientist and did a lot of researching on the treatments and have a general sense that no one really knows much about how you get or loose this disease --that IVIG works on some people, prednisol on others, some of us get better on our own (esp G-B) and some of us are just stuck with an awful disease.
Carl (not real name)
Carl, thanks for replying, It sounds interesting in you going to see this expert ? Would you mind sharing who and where he is ? Thanks, Jim ~
Carl said:
I got hammered with CIDP (or possibly Guilliam Barre) in April, with some small signs of trouble since Thanksgiving. I took the full treatment with IVIG with no apparent effect --two months ago I could not walk 4 feet without lurching, lightheadedness etc. or more than 50 yards in my yard with sticks. Could not do any house work etc. Next my good doctor put me on solumedrol, a kind of prednizone. I have been getting much better, can walk around house without lurching or sticks, balance better, hands less fuzzy can do more and more chores and type better. I can "hike" for a half hour or hour with sticks and some rest. Do not know if its the solumedrol or I am just slowly recovering, but there is hope. Of course the future is very uncertain but day by day or at least week by week I get better. I will see "the nation's leading expert on G-B -CIDP " next week in a far off city so we shall see what he has to say. I made the appointment months ago when I was at the bottom of my disease so this will be a different sort of meeting....Meanwhile my local doctor in Kalispel Montana is excellent. He wanted me to get a second opinion. I will report on all this. I am a retired scientist and did a lot of researching on the treatments and have a general sense that no one really knows much about how you get or loose this disease --that IVIG works on some people, prednisol on others, some of us get better on our own (esp G-B) and some of us are just stuck with an awful disease.
Carl (not real name)
Other people have covered the difference between the two treatments pretty well, so I won't go into that.
What I will say is that I have had both. The plasmapheresis sorta worked, in that I regained enough strength to get out of bed, but I started to relapse almost immediately. The IVIG seemed to me to work better (recovered more strength, more quickly), and lasted longer. So from that standpoint IVIG was better for me, and I never had plasmapheresis again.
The other point is that for my plasmapheresis they surgically inserted a large tube into the jugular vein in my neck, to withdraw and return the blood. It was a major nuisance (I almost said pain in the neck) - I kinda felt like Frankenstein. Don't know if they do that for everybody or not. The nurses had to come in and flush it periodically to make sure it stayed open, and any opening like that is always a possible site for injection. On the other hand, I never had any problems with the IVIG. All it requires is a normal stick in one vein, and I have good veins, so that was never an issue, and I would just go home with a bandaid on my arm. So I was very happy to stay with the IVIG.
But, as many people have pointed out, everyone responds differently. You may find that plasmapheresis works best for you, or you may have an experience like mine. Whatever you try, listen to your body, communicate with the doctor as to how well it is working (or not working), and if you don't feel like it is helping, be proactive in getting him to try something different.
I was interested to see some of the discussion here so did a little research. Appears that IVIG can cause kidney problems but for most of us that will not apply as it appears that you first must be predisposed to some kidney problems and you are using particular products and administration is too fast and not adequately monitored. That is a LOT of "ands" so for most of us - no problems.
Plasmapheresis (or plasma exchange) is particularly used where your neuropathy has a paraprotein association. If you read up on MGUS you will see that there is some debate about proving the association as many people who are otherwise A-OK have MGUS, but if you have GBS or CIDP and evidence MGUS then the safe option is to consider they are associated in which case plasma exchange should be considered by your specialist, particularly if other options appear ineffective.
Jim
Can you post me your email?
Carl
hi Cair,
I can only tell you how it is for me.I have had 80 IVIG treatments every 4 weeks now at 45mgs Gammaplex,taken in a day unit in a local NHS treatment under nursing supervision,lasting 4 hrs each,Viagam took twice as long.For me,it is as regular as the female menstrual cycle and I will need it every 4 weeks for the rest of my life.I intend to live to 105 so there's a way to go yet!
My neurologist informed me of all the risks associated with the treatment-I'm sure your doctors will too as the treatment,like any other,does have some known risks.Basically,he said "It's powerful stuff,like a very big steak!"
One of the guys I bump into is on his 150th IVIG.This guy is a real veteran,I'm a spring chicken and you are just going out to bat.
My doctor also told me to keep drinking a lot of water.I normally drink about 4 cups of tea and some fizzy water as it can unsettle the tummy.
I was 83% paralysed,now I'm walking on 3 mile marches so I'm very pro-IVIG-it worked for me.
The biggest issue I have is my crinkly veins which need a good warm up.Once the canula is in-and many thanks to the veinfinder generals amongst the nurses it's usually first time.Keeping in the canula is important and not twisting the tube leading to "going down the line" so I like a bandage to remind me the arm is out of operation,like a splint.
Then,as the human globulin passes into your body,see how you feel,report anything unusual.Otherwise,it's 4 hours to kill.Fortunately,they have wi-fi there so you can listen to music,get on Bens Friends,tweet,email and all the rest.I also use the time to catch up on some sleep and drive everyone mad by preaching revolution at any opportunity.
I hope that helps a bit and best wishes.Let us know how you get on-my experience is that it took at least 6 weeks to have any effect.
Thankyou all so much for the replies! Your are all a massive source of comfort and very reassuring. I hope whatever treatment you’re on continues to work for you, fingers crossed I will get some help out of this as I’m so tired and fed up of being ill and feeling like I’m just existing.
Michael, I have an IgM MGUS, and this is my neurologist’s reason for giving me plasmapheresis instead of IVIG. I tested negative for Anti MAG though, so there is a question of whether I have plain old CIDP, or if my CIDP is caused by the IgM MGUS. My neuro refuses to try IVIG…he says “If it’s not broken, why fix it?” He’s right…I am doing well on my monthly medrol dose pack and 4 days of plasmapheresis…BUT I would like him to try something that might last longer like IVIG. I may not respond at all to IVIG, but I would like to find out. One day! Do I sound unrealistic? Or crazy? LOL
Paula
Michael C Stark said:
I was interested to see some of the discussion here so did a little research. Appears that IVIG can cause kidney problems but for most of us that will not apply as it appears that you first must be predisposed to some kidney problems and you are using particular products and administration is too fast and not adequately monitored. That is a LOT of "ands" so for most of us - no problems.
Plasmapheresis (or plasma exchange) is particularly used where your neuropathy has a paraprotein association. If you read up on MGUS you will see that there is some debate about proving the association as many people who are otherwise A-OK have MGUS, but if you have GBS or CIDP and evidence MGUS then the safe option is to consider they are associated in which case plasma exchange should be considered by your specialist, particularly if other options appear ineffective.
If you are "doing well" then most likely your neuropathy is associated with the MGUS but even the experts have problems with this sort of decision so who knows? Personally I think IVIG is a more "attractive" treatment than the other sounds to be but you are subject to what the doc says and the doc is unlikely to change what appears to be working because that is risks for everyone (but mainly you).
Anyhow - good luck!
Nana_P said:
Michael, I have an IgM MGUS, and this is my neurologist's reason for giving me plasmapheresis instead of IVIG. I tested negative for Anti MAG though, so there is a question of whether I have plain old CIDP, or if my CIDP is caused by the IgM MGUS. My neuro refuses to try IVIG...he says "If it's not broken, why fix it?" He's right...I am doing well on my monthly medrol dose pack and 4 days of plasmapheresis...BUT I would like him to try something that might last longer like IVIG. I may not respond at all to IVIG, but I would like to find out. One day! Do I sound unrealistic? Or crazy? LOL
Paula
Thanks!
Michael C Stark said:
If you are "doing well" then most likely your neuropathy is associated with the MGUS but even the experts have problems with this sort of decision so who knows? Personally I think IVIG is a more "attractive" treatment than the other sounds to be but you are subject to what the doc says and the doc is unlikely to change what appears to be working because that is risks for everyone (but mainly you).
Anyhow - good luck!
Nana_P said:Michael, I have an IgM MGUS, and this is my neurologist's reason for giving me plasmapheresis instead of IVIG. I tested negative for Anti MAG though, so there is a question of whether I have plain old CIDP, or if my CIDP is caused by the IgM MGUS. My neuro refuses to try IVIG...he says "If it's not broken, why fix it?" He's right...I am doing well on my monthly medrol dose pack and 4 days of plasmapheresis...BUT I would like him to try something that might last longer like IVIG. I may not respond at all to IVIG, but I would like to find out. One day! Do I sound unrealistic? Or crazy? LOL
Paula
Jim
See above....
Carl