Confusion over IVIG Protocol
AnonymousJuly 11, 2009 at 11:39 am
There seems to be difference of opinion among neuros on IVIG protocol. I was diagnosed with CIDP in Oct 2008. The spinal tap confirmed that I had the viral infection. The neuro prescribed that I take three courses of IVIG; one course each month. In each course, I were to take 5 daily doses of IVIG per week @30g/day (70kg body weight * 0.4gm = 30gm). The 1st course was given during 7-11 Oct 2008. It had a good impact especially on my legs; in the morning I did not feel as tired as I used to. The 2nd course was given during 29 Nov to 4 Dec 2008. The 2nd course further improved my condition and I played the best golf I had in 3 years during Dec 2008. During my follow up in mid Jan 2009, the neuro proposed that I wait for another month or two before the 3rd course to see if there was a residual impact of the 2nd. I was feeling fine thru Jan 2009 but from early Feb 2009, my condition slowly deteriorated and I relapsed. And the relapse was worse than the original condition. I had consulted two neuros at the outset. The other neuro believed I was treated inadequately and advised that I follow the “NIH protocol” which calls for: three doses of IVIG (30gm/day) every other day for the first week (as induction course) and then one dose 30gm/day every two weeks until I feel significant improvement. I started this protocol with three induction doses on 24, 26, 28 March 2009 and have taken one IVIG dose every two weeks since. By now, I have taken the same amount of IVIG (total of 350 gm) under the NIH protocol (spread over 4 months) that I had taken under the original protocol (spread over month-n-half). There is no change in my condition. I feel weak in the legs and tingling sensation under my feet, and have no energy to hit even a few golf balls let alone play a round. Throughout my illness, I have been able to walk, drive, travel, and go to work. Both neuros had advised to stick to IVIG and avoid steroids as they have side effects. I have two questions:
1. What IVIG protocols are neuros following in most cases?
2. Should I try steroids? Someone proposed Predinsone 60 mg/day.
My own assessment is to go back to the original protocol and take three courses of IVIG over three months. Each month I will take 5 infusions on consecutive days. And then have one maintenance dose every month!!!
Thanks for sharing your advice and experiences.
AnonymousJuly 11, 2009 at 12:36 pm
There are many protocols likely due to the fact that the disease is really rare and very, very variable in different people. So different ways will work in different people. The one common thing about most of the protocols is that the first dose (or loading dose) adds to a total of 2 g/kg (as your 0.4 g/kg for five days did). Most of the rest of the protocols call maintenance doses a total of 1 g/kg. there are arguments from pharmacokinetics that a smaller dose twice a month is more effective which makes logical/mathematical sense, but I have never seen anyone actually document in a person that this works by levels. I think the greatest argument in all of this is that if something works for you, then this should be used and then slight modifications considered for reasons of quality of life–so I think you are right on to ask to go back to the way that worked with “loading doses” of 2 g/kg for the three times and see if you are significantly improved as before and if so, then consider a maintenance schedule.
Regarding steroids, one thing to think about is pulse steroids–in which steroids are given once a week or once every other week or even once a month in large doses. there are fewer long term complications from this and there are a number of papers showing that this can be effective. However, immunoglobulin worked for you to improve you a significant amount and does have fewer long term effects, so try this first.
Remember the goal is to be aggressive enough to stop continuing damage and to maintain function so you want to try to get as much back to normal as possible and try to stay there. You will not be 100% normal because some damage just will not heal well enough, but this is a chronic illness for which there are few possibilities of cure and immunoglobulin and steroids are not stopping the fact that there is disease there, just limiting damage. They are not like antibiotics that get rid of the source of the illness–rather more like glucose controling medication that keeps the disease from getting severe and then causing terrible damage.
Good luck to you.
WithHope for a cure of these diseases
AnonymousJuly 11, 2009 at 12:51 pm
I also was diagnosed Oct ’08 … I was given 4 straight days early Nov. Both my diagnostic and my treatment neurologists told me the protocol was to give 5 straight days of IVIG followed by 6 – (1 day) IVIG every 4 weeks. I was told that since I was in good health every other way, that the treatments could be pushed to me in 4 days (I did get sick after the 3rd day but was still able to complete the first/loading treatment). At the end of the this cycle, I would then be re-evaluated. A lot of websites I’ve visited stated the same initial IVIG treatment protocol.
I did not have a lot of pain initially, but sometime in Feb my pain went off the charts. So I started a pain mgt program … which we are still working on (:rolleyes: ) but also had my IVIGs upped to 2 days every 4 weeks until the end of this year.
I don’t think it’s helped the pain, but it has really helped my energy substantially. I was getting back my energy level (which has always been high) when the pain came on and sucked it out! So with the double dose, I keep my energy between treatments despite the pain. I am encouraged by pain program and am starting to do things again that I lost the ability to do earlier in the year.
BTW I tired and HATE steroids and they didn’t help me.
I wish you the best of everything with your treatments and hope you get what works for you. My treatment neurologist states that every case is different and what works for one might not work for another. He says it is trial and error until hitting the right combination. He also told me they have a 90% success rate of finding the right combination to allow a normal lifestyle. He also states there still might be some concessions of what I might define as a normal lifestyle versus what he might define … we’ve had some good laughs around this! Before CIDP, I went dancing 4 times a week and was usually out doing something the other 3 nights (dinner with friends, a little early evening sailing, etc). He tells me that is not a “normal” lifestyle and I tell him it is for me! :p But he does state he can probably get me dancing a couple of nights a week and maybe even all the way back. I certainly hope so! But he mostly tells me that it takes patience on my part and good feedback to him to make those tweaks before we will hit unpon the right cocktail of meds to give me back my life.
I don’t know what to tell you – I feel extremely fortunate to have my neurology team as they have good experience with treating CIDP successfully. I’ve met several other CIDP patients that didn’t get better until they started with the clinic/doctors where I am a patient. So – either change doctors until you find one that will listen to you or if you trust your current one, just make certain the lines of communication are there and be firm in what you know works for you. I keep a small daily appointment book with me that I jot quick notes on how I’m doing, change of meds, reactions, etc and take with me to the doctor. We go over it every visit and he uses it to make adjustments. It’s been extremely useful. It’s also helped me to clearly see some of my cause and effect actions and to find work arounds.
I wish you the best success,
AnonymousJuly 12, 2009 at 6:24 am
Thanks to both of you for the useful insights; these are really helpful. I will avoid steroids for now. I think the issue with the first protocol was that after seeing good improvement, the neuro became too optimistic and discontinued IVIG infusion only after two monthly courses. This time, not only I will have to get all three monthly courses but also devise a bi-weekly or monthly maintenance dose. I will keep you posted. Thanks again.
AnonymousJuly 12, 2009 at 8:38 am
My son had a similar experience with a relaspse. He got sick in Oct 2008 also and was dx in Dec 2008 with CIDP, He got his first loading dose of IVIG the week of christmas. By the end of January he was walking with a cane and doing very well. unfornuately he was kicked off our ins since he had to take the semester off college. He went 9 weeks with no ivig AND HIS RELASPSE was worst than his original state in DEC. he is currently in a wheelchair where he has been since April. even though he has been getting IVIG again. He even tried PE also and it was enough to get him out of the chair. Now it will take months to get him out of this chair.
Remember this illness isn’t going away. you might get better but will still have to do some sort of maintenence to stop you from having yet another relapse. so once you find a treatment that works do not let them take you off it once you get better, you might be able to stretch your treatment out a little bit but the first sign of a relapse get another treatment right away. CIDP doesn’t go away after 3 months or once you start feeling better.
AnonymousJuly 12, 2009 at 11:32 am
I had an appointment with a new neurologist just a few weeks ago. He’s head of neurology at the Louisiana State University Medical School and he specializes in CIDP, so my assumption is that he’s up on the latest protocols for treatment of the condition. He told me that the current protocol for initial treatment is 1 gm/kg each day for two successive days, then repeating the dose every 30 days.
This is equivalent to the old “induction” or “loading dose” given over a two day period, rather than over a 5 day period, and the equivalent of the old loading dose repeated every 30 days.
As mentioned earlier, CIDP presents differently in different people, and treatment must be customized for each patient. My experience has been that many neurologists don’t keep up with current protocols for treatment and they may be reluctant to prescribe higher doses of IVIg because of this.
AnonymousJuly 12, 2009 at 9:56 pm
My son was diagnosed with CIDP in July of 2006. He’s taken varying doses of IVIG over the last two years and is now doing very well under his current treatment.
His first dose was when we took him to the ER after a couple weeks of docs trying to figure what was going on. Matthew had very slowly grown weaker in the legs and arms during his Junior and Senior year. He was a very healthy strong athletic kid until then. It was so slow my wife and I didn’t put it together until the end of his senior year. After graduation he was having trouble walking or lifting anything over a few pounds. His doctor was baffled and the weakness had begun to worsen daily.
After two more weeks he had begun tripping and falling and didn’t have the strength to get off the floor without help. We took him to the emergency room where a neurologist treated him with 5 days, 30gm each of IVIG. It was like a miracle. By the 3rd day his strength was returning. After the 5th he felt better then he had in over a year. We went home thinking Matt was on the road to recovery.
By the third week he felt it returning, within 6 weeks he was worse then ever. Except for his determination he would have been in a wheel chair. He couldn’t lift a half filled styrofoam cup to his mouth with two hands unless he lowered his head to the glass. At this time they suspected GBS, but we had begun to suspect CIDP. We took him to a 2nd neurologist and back to the ER and after another 5 days of IVIG he was back again.
This 2nd neurologist diagnosed CIDP and put him on 5 day IVIG every 4th week in home treatment. This kept it at bay for a while. They tried going every 5th week and it got worse. They went back to 4 weeks and it worked for a while but slowly began to return a little sooner. The last 8 months or so he’s been treated with 60gm a day for 3 days every 3rd week, 180gm every 3 weeks. He’s doing very well now. He plays golf and has no visible disability. Although he still feels the numbness and tingling grow worse in the days leading up to the next treatment.
IVIGs made matt very sick to the stomach the first few times but he’s grown to tolerate it well. Some may not be able to take this much at first but don’t give up.
All that to say, there’s no exact protocol for IVIG and don’t let them put you in a box! Insist they try different doses if your not getting better after a few months and stay proactive.
Over the last two years they’ve also treated Matt with Prednisone in varying amounts. Matt had allot of muscle waste in the months prior to treatment. The Prednisone helped him build back most of the muscle and repair damaged nerves but it also has bad side effects. Matt began gaining too much weight and his mode swings were terrible. No one knows what other long term effects may occur.
Prednisone is an immunosuppressant. Most believe this helps CIDP. The thinking is the immune system is out of control and needs to be suppressed. There’s a minority who believe the opposite is needed. Some even believe CIDP could be caused by an infectious disease and steroids could make it worse. We believe this is the case with Matthew.
His doctor has run many tests over the last 3 years trying to discover what triggered CIDP. The last round of testing he was re-tested for some of the things they checked in 2006 that had been negative. He had tested negative for Lyme and we asked to have him re-tested. They bucked us but we insisted, knowing the rate of false negative Lyme tests and Matt’s exposure to ticks. Last March his second alisa test came back positive for Lyme. He was given the western blot test and it came back positive also.
Matt has Lyme induced CIDP. Lyme was diagnosed this spring under the very narrow CDC testing guidelines and an Infectious Disease MD from the University of Florida who follows these strict guidelines diagnosed Matt with Lyme induced CIDP. Unfortunately they also follow the very restrictive protocol for treating Lyme, 4-6 weeks of oral antibiotics. That presented a problem. Prednisone hinders his ability to fight infection and the effectiveness of antibiotics. He needed antibiotics but you can’t just stop taking Prednisone. It’s VERY Dangerous to do so! But we didn’t want to wait for antibiotics. They’ve slowly weaned him, now down to only 5mg every other day. At the same time they’ve given him 100mg Doxyciline twice daily for the first month, then 100mg Minocycline twice daily for an additional 2 months. We had to press to get the last two months of antibiotics. This along with the IVIGs has done wonders for Matt! He feels better then ever. He only has a couple days of antibiotics left so we’ll see how he does from here and hope the prednisone didn’t hinder the antibiotics too much. They’ve told us they will not continue antibiotics, we will see. we are very proactive with Matt’s treatment and won’t take no easily!
If your CIDP was triggered by an infection you don’t want to suppress your immune system and hinder your ability to fight that infection. On the other hand if your doc isn’t willing to give you enough IVIG and your CIDP is not under control you may run the risk of permanent nerve damage and need steroids. So be careful with the decision to take Prednisone or any steroids. Make your Doctor explain the risks.
If you suspect you may have Lyme disease, read up on LYME testing BEFORE you take the test! There are many things that can cause a false negative. Once testing negative for Lyme it’s very hard to get a Doctor to retest and almost impossible to get treatment under insurance. Make sure the first one counts!
Sorry this was so long!
AnonymousJuly 13, 2009 at 1:41 am
I have 50 mcg. of IVIG 6 times a month for total 0f 300 grams. The schedule is now 2 days one week and one day the next week. When I first started 4 years ago it was 3 days in a row then I restarted 11 days later. It has controlled the runaway deterioration and uncontrolled pain due to demyelination.
My neuro believes in hitting it hard and staying the course of it works. We’ve tried to cut me back to 3 times every 3 weeks but I can’t breath/no energy/bed ridden too much.
Neurologists have different opinions on how much/how often to dose. You need to have the IVIG tailored to make you stable, hopefully better or at least not to lose ground. I was able to put my 2 fore-crutches in the closet. I must be careful of what I do ever day. Energy is quickly used up.
I’m just glad to be able to have some sort of life again.
I’m on strong pain meds only because the nerve damage was so pronounced before IVIG.
This Forum has excellent info to help you navigate having CIDP.
AnonymousJuly 14, 2009 at 9:26 am
Many thanks to all of you; this forum is a great support. I have an appointment with my neuro tomorrow and I am preparing for a detailed discussion with him. I must say that I have good faith in him. His decision to prolong the gap between infusions was a judgment call but he is willing to experiment with the protocol to calibrate it to my needs and med insurance is not an issue. From your notes, I have learned that:
1. Although loading IVIG dosage (2 gm/kg) is pretty much a standard but it can be infused in a shorter period. In my case, it was infused over 5 successive days. But some of you have taken it over just 2 or 3 days.
2. The maintenance dose (quantity and duration) would vary depending on the patient’s condition. In my 1st protocol, two loadings 6 weeks apart worked well. I will now take three loadings 4-5 weeks apart and also work out a monthly maintenance dose.
I am otherwise a healthy person; with no other medical condition or history. I take no other medication. I have no allergies or reactions. In Jan/Feb, I had started feeling pain in finger joints and around the wrists. There was also a little twitch on the right side of my neck. With the infusions in the 2nd protocol, at least, these pains and twitches have subsided. But the main weakness in the legs, slow motor functions in the arms (cannot swing golf club with full control), and tingling under the feet remain. I have the following questions:
Q1. What infusion rates are used? In my case, they start at 40 ml/hr for the first 30 min, 80 ml/hr for the next 30 min and then at 120 ml/hr for the remainder dose. So it takes about 5-6 hrs to infuse 30 gm (or little over 600 ml). My infusions go smoothly. I feel fine during or after the infusion. Can the infusion rate be any faster?
Q2. IVIG they give me is prepared by Baxter. Any difference in brands?
Thanks for your advice.
July 15, 2009 at 8:34 am
Yes, there is a difference in IVIG Brands. Gamunex is the only brand processed using Glycene (amino acid), while all the others use sucrose. Gamunex was approved by the FDA for treating CIDP in September of 2008. I had been on other IVIG brands several times over the years with no response, however when they tried Gamunex in December 08, I began to see improvement, which continues. I get 200 grams every three weeks.
AnonymousJuly 15, 2009 at 9:17 am
To answer your questions:
1) The flow rate should be done by weight. I’m not sure of the math but I’m sure if you speak with your dr or infusion nurse they will be able to explain it to you. My daughter weighs about 60 lbs & she has always had the same flow rate (since she was 4 & 35 lbs). She gets 20 grams of IVIG & it takes 2 hours 45 minutes. She did get 30 grams twice & that infusion took 3 hours 15 minutes.
2) There is a difference in IVIG brands. I found the following text at this website: [url]http://www.littleleakers.com/IVIG.html[/url]
“Generally the difference between brands of IVIG is in the amount of IgA content and also if the IVIG contains sucrose,glucose or some other sugar. Some IVIG products have Glycine while another one has no preservatives.
Different IVIG products match different patients. In general all the products work about the same. Some IVIG products have a 5% concentration others can be made 10%. The concentration of IVIg will make if thinner or thicker.”
I do know people who have diabetes should not use a brand with sucrose as it can cause renal failure. Basically, sometimes you have to try different brands to see if you respond better to one more than the other.
Emily has always used Gammaguard & has responded well to it (KNOCK ON WOOD!). Gammaguard used to be the latest & greatest because of the cleaning process, apparently it helps with side effects. The newest latest & greatest seams to be Gamunex because it uses amino acids & it’s the only brand approved by the FDA for CIDP treatment, the other brands are all used off label to treat CIDP.
You are right that most loading doses are 2 grams per kg. It can be tailored to go up or down depending on the patient. Emily used to get 4 grams per kg for every treatment – so a loading dose for her was 4 grams per kg every day for 5 days. This treatment was extremely aggressive and tailored specifically for her.
Emily’s old infusion nurse discussed IVIG amounts with me & said that different diseases call for different protocols. She treated a few adults who received 4 grams per kg as well but not for CIDP. It just depended on their disease & their needs.
Dr’s don’t really like to do 4 grams per kg for adults though, so keep that in mind. Also some dr’s don’t want to do a 5 consecutive day loading dose for females, they want the IVIG given every other day over 10 days. I’m not exactly sure on the reasoning but we saw a dr for a few months who did it this way.
Hope that helps & I haven’t caused you any confusion. It takes awhile for all of this info to sink in – there’s just a ton to learn.
Good luck at your dr’s appointment!
AnonymousJuly 15, 2009 at 12:11 pm
I googled on Gamunex and one of the researchers reports that “There was no comparison to a competitor brand/formulation. Although differences in the incidence of adverse reactions based on IVIG formulations have been reported, there has not been evidence for differences in efficacy.” Check the study in the link below.
In both protocols, I used Gammagard S/D (by Baxter) and I responded well in the 1st protocol. BTW, I had a good consultation with my neurologist this evening and he has ordered the loading dosage (2 gm/kg) which I will take over the next two days. Wish me luck!
AnonymousJuly 15, 2009 at 12:34 pm
Some researchers & dr’s believe there is no difference in efficacy but the anecdotal evidence strongly suggests there is a difference.
Some people on this site have not had success with one brand but success with another.
It goes back to our thought that treating CIDP is an art form. Each CIDP’er is very different & will require a different treatment plan.
July 15, 2009 at 6:44 pm
We had many reactions to Gammaguard and switched to Octagam, the reactions were even worse. Incidentally, Octagam uses Maltose, so when doing a blood work up, it is necessary to do a glucose specific blood test so as not to give a result of diabetes and insulin be given in error, We switched back to Gammaguard, Kevin also felt that Gammaguard physically was better for him, he felt that he was weak at about 3 weeks with the Octagam as opposed to no weakness with Gammaguard. Currently we are running a different plan to ward off the aseptic meningitis reaction, last treatment was the first try. We are going to split the load every 2 weeks over 2 days instead of once a month over four days. Bothe to help with school absence AND reaction. Last week was the first time and there was no reaction, for the first time in 2 years. We will see what happens next week for the second part of the installment.
About gammunex and the fda approval, just my uneducated opinion, the reason they were fda approved, is because they put the money up to do the testing and meet the criteria of the fda on paper, therefore getting bragging rights. As mentioned by others, they are all pretty much the same regarding the ig part, the stablizers are mostly where they differ.
Dawn Kevies mom
AnonymousJuly 15, 2009 at 9:36 pm
[quote=GAVol]Yes, there is a difference in IVIG Brands. Gamunex is the only brand processed using Glycene (amino acid), while all the others use sucrose. Gamunex was approved by the FDA for treating CIDP in September of 2008. I had been on other IVIG brands several times over the years with no response, however when they tried Gamunex in December 08, I began to see improvement, which continues. I get 200 grams every three weeks.
Fred, this chart indicates that Gammagard is also processed using glycine.
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