I lost my entire discussion when I previewed it! Bummer 
I missed my second of three infusions this week when my neuro cancelled it because I had a few cramps unrelated to the IVIg. Iāve been trying to get him to add another infusion. He seems content to just skip it. That means only 100gm/150gm will be received.
I would like to know if you would share similar experiences. I would also like anyone whoās interested, to share what their doses of IVIg are, how often they get them, over what period of time, what the interval is between infusions, AND share what their individual responses and benefits are e.g.: pain, strength/weakness, tiredness, stability and balance, need for assistance, the blues, and numbness/tingling.
This is kind of an unofficial, confidential survey. I will certainly benefit as a doctor/patient. It will give me invaluable information that I couldnāt get any other way. I need a broader reference than just myself. Thanks in advance.
Sorry Geepster. I can't help you with your problem BUT I also lost my first discussion message when I previewed it. Must be a bug in the program.
I have my next appointment with the Neuro on the 20 Nov when I expect he will advise me to go onto IVIg but not sure whether the Medical Aid will cough up the money as it is a smig expensive
- 240 grams of IvIGg / month
- given bi-monthly @120 grams over 3 days
- 40 grams infused each session
- total days each month of infusions = 6
- infusion rate (I request this) is 5-6+ hours / infusion
- #21 or 22 needle
- 80 - 100 fluid ounces of vitamin water each session
- 2400 mg total / day of Tylenol, 1200 mg taken 2 hours before infusion
- 3.6k-4.2k gabapentin taken each day
- 100 mg total of Imuran each day, 50 mg 2x / day
- 50 mg bendyril injection every four hours (as requested by me) per session
- lidocane for each needle stab, no exceptions. I am adverse to needle that hurt me!
>look for Drew's story about CIDP (Google it). He did statical analysis, he is a professional mathematician.
I have had two different providers of IvGg and two very different results over the past 24 months.
Kaiser (a non-profit, for-profit corporation!), who, using an outpatient clinic, provided me with effective treatment and SOPs (standard operating procedures) that were always of a high standard regarding continuity of care and follow up.
Blue Criss-Cross ( my current treatment/infusions are now in a hospital setting) provides me the same basic protocols as Kaiser, but not of the same level of nurse professionalism, CIDP understanding and concern.
With the strict Kaiser SOPs I never had side-effects, hematomas or vein-valve problems. In other words, Kaiser infusion sessions worked (until I was arrested for a bogus bomb threat and denied Kaiser coverage, garr &*& #%* (!)#% !)
My Blue Criss-Cross treatment is in the surgical ready room at a hospital. I am assigned the bed I want, the infusion duration, needle size, stab location,etc., But now I am beginning to wonder if my choices for comfort and for avoiding side effects are causing me the problems I now have. These are serious side-effects, one of which almost killed me (Autonomic dysreflexia (AD), also known as autonomic hyperreflexia).
My fear of side effects (headache, vomiting,etc.) made me ask for longer infusions, but a travel nurse (another set of problem) read the instruction off the IV bag yesterday, saying that my IgGg should be used in 4 hours, but I always asked for six hours + to avoid side-effects. And I now wonder if I am getting an effective dose of IgG. Is it my mistake or theirs?
I've learned that 200 g / month does cut it for me, but then again, maybe I'm wrong about this also. Perhaps a lesser dose, every week is the answer.... ?
I am now being told that because of the amount of needle stabs to my veins that my veins are receding deeper into my arms and are harder to find, that more vein-valves are somehow appearing at smaller distances in my veins, and eventually I might need a catheter.
I get IvIGg every other week. The three days of infusions are usually given to me on Tu, Wed, Fri., from 8am to 3pm and they provide me with 10 days of relief from the horrible symptoms of CIDP. These are rigid muscles, cramps, and a variety of strange sensory nerve problem (http://www.neurosymptoms.org/#/sensory-symptoms/4533052274)
The benefit of IgG tapers off over 10-11 days, but at times fails me completely... mostly in the realm of leg/neck muscle leg strength. I have axonial damage to my right hand ulnar nerve, left leg tibial nerves and I doubt they'll ever return (although my PT says they might). I have anatomical PN which has discombobulated my bladder and bowels, however, I did not have these problems with Kaiser care... but like I mentioned, Kaiser tossed me in jail in a paranoid reaction from a new appointment clerk who heard me mutter to myself about my state of pain; resulting in a felony terrorism charge (later reduced to a petty misdemeanor, six-mouths probation and a $105 fine). This past year of stress, brought on by their knee-jerk reaction to a utterance I made before an infusion... long story, but I think they may have brought on so many of the side effects I now suffer, not realizing CIDP is in the realm of MS, even ALS in ways.
I am now told by my new neuro that my CIDP is BAD, and that he needs to consult neuros on other island...
NEVER live in Hawaii if you have serious or chronic disease!!! I see it in his eyes that he is confused about how to proceed. And yet, when I try to navigate my own way to what I think are the best treatments, intervals for infusions, amounts, etc, I run into this new Blue Criss-Cross of regulations regarding IgG amounts and procedures ... it has become like the Office of Circumlocution from that Dickens novel, Little Dorrit... with Franz Kafka writing the screenplay of my life.
I am convinced that constant swimming, small-weight work outs, walking on a flat area for three mile each day, super-meditation and proper diet can mitigate the ravages of demylinization's wrap and unwrap, their Mephostophiloan onslaughts.
All CIDPers need to ask the question you are asking and we need to get this disease cured! Fifteen years I suspected CIDP, have been diagnosed for only three and the entire thing has been a misadventure of errors from insurance providers and medical evaluations of sub-par neurologist. Now I am dealing with a hospital setting of indifference, negligence where I am relegated to lesser outpatient status... if it were MS I suffered, I know it would be very different. One stab ( that often turns into 5-6), then on with the machines, taking of the vitals and then offf the nurses run to yak and yak at the nurse's station. I am an easy patient, but the little details for CIDP treatment are slowly being disregarded. Maui Memorial Hospital is operating in the red, at a $46+ million deficit this year, (more red millions predicted next year) and slowly patients and patient services are disappearing right before my blurry eyes!!!
I think being on Oahu (main island here) where they have a half-dozen quality hospitals might give me the relief and treatment I should get for the amount of money I pay for insurance!!! I can't move as I am locked into tenure here and money doesn't grow on palm trees.
Without my loving wife and Connecticut family I would be dead. My God, what a rant! Sorry!
my neuro is great but not as informed as he should if he is to properly treat this chronic and protean disease. Once again, thanks for all the info and the personal story.
estaban said:
- 240 grams of IvIGg / month
- given bi-monthly @120 grams over 3 days
- 40 grams infused each session
- total days each month of infusions = 6
- infusion rate (I request this) is 5-6+ hours / infusion
- #21 or 22 needle
- 80 - 100 fluid ounces of vitamin water each session
- 2400 mg total / day of Tylenol, 1200 mg taken 2 hours before infusion
- 3.6k-4.2k gabapentin taken each day
- 100 mg total of Imuran each day, 50 mg 2x / day
- 50 mg bendyril injection every four hours (as requested by me) per session
- lidocane for each needle stab, no exceptions. I am adverse to needle that hurt me!
>look for Drew's story about CIDP (Google it). He did statical analysis, he is a professional mathematician.
I have had two different providers of IvGg and two very different results over the past 24 months.
Kaiser (a non-profit, for-profit corporation!), who, using an outpatient clinic, provided me with effective treatment and SOPs (standard operating procedures) that were always of a high standard regarding continuity of care and follow up.
Blue Criss-Cross ( my current treatment/infusions are now in a hospital setting) provides me the same basic protocols as Kaiser, but not of the same level of nurse professionalism, CIDP understanding and concern.
With the strict Kaiser SOPs I never had side-effects, hematomas or vein-valve problems. In other words, Kaiser infusion sessions worked (until I was arrested for a bogus bomb threat and denied Kaiser coverage, garr &*& #%* (!)#% !)
My Blue Criss-Cross treatment is in the surgical ready room at a hospital. I am assigned the bed I want, the infusion duration, needle size, stab location,etc., But now I am beginning to wonder if my choices for comfort and for avoiding side effects are causing me the problems I now have. These are serious side-effects, one of which almost killed me (Autonomic dysreflexia (AD), also known as autonomic hyperreflexia).
My fear of side effects (headache, vomiting,etc.) made me ask for longer infusions, but a travel nurse (another set of problem) read the instruction off the IV bag yesterday, saying that my IgGg should be used in 4 hours, but I always asked for six hours + to avoid side-effects. And I now wonder if I am getting an effective dose of IgG. Is it my mistake or theirs?
I've learned that 200 g / month does cut it for me, but then again, maybe I'm wrong about this also. Perhaps a lesser dose, every week is the answer.... ?
I am now being told that because of the amount of needle stabs to my veins that my veins are receding deeper into my arms and are harder to find, that more vein-valves are somehow appearing at smaller distances in my veins, and eventually I might need a catheter.
I get IvIGg every other week. The three days of infusions are usually given to me on Tu, Wed, Fri., from 8am to 3pm and they provide me with 10 days of relief from the horrible symptoms of CIDP. These are rigid muscles, cramps, and a variety of strange sensory nerve problem (http://www.neurosymptoms.org/#/sensory-symptoms/4533052274)
The benefit of IgG tapers off over 10-11 days, but at times fails me completely... mostly in the realm of leg/neck muscle leg strength. I have axonial damage to my right hand ulnar nerve, left leg tibial nerves and I doubt they'll ever return (although my PT says they might). I have anatomical PN which has discombobulated my bladder and bowels, however, I did not have these problems with Kaiser care... but like I mentioned, Kaiser tossed me in jail in a paranoid reaction from a new appointment clerk who heard me mutter to myself about my state of pain; resulting in a felony terrorism charge (later reduced to a petty misdemeanor, six-mouths probation and a $105 fine). This past year of stress, brought on by their knee-jerk reaction to a utterance I made before an infusion... long story, but I think they may have brought on so many of the side effects I now suffer, not realizing CIDP is in the realm of MS, even ALS in ways.
I am now told by my new neuro that my CIDP is BAD, and that he needs to consult neuros on other island...
NEVER live in Hawaii if you have serious or chronic disease!!! I see it in his eyes that he is confused about how to proceed. And yet, when I try to navigate my own way to what I think are the best treatments, intervals for infusions, amounts, etc, I run into this new Blue Criss-Cross of regulations regarding IgG amounts and procedures ... it has become like the Office of Circumlocution from that Dickens novel, Little Dorrit... with Franz Kafka writing the screenplay of my life.
I am convinced that constant swimming, small-weight work outs, walking on a flat area for three mile each day, super-meditation and proper diet can mitigate the ravages of demylinization's wrap and unwrap, their Mephostophiloan onslaughts.
All CIDPers need to ask the question you are asking and we need to get this disease cured! Fifteen years I suspected CIDP, have been diagnosed for only three and the entire thing has been a misadventure of errors from insurance providers and medical evaluations of sub-par neurologist. Now I am dealing with a hospital setting of indifference, negligence where I am relegated to lesser outpatient status... if it were MS I suffered, I know it would be very different. One stab ( that often turns into 5-6), then on with the machines, taking of the vitals and then offf the nurses run to yak and yak at the nurse's station. I am an easy patient, but the little details for CIDP treatment are slowly being disregarded. Maui Memorial Hospital is operating in the red, at a $46+ million deficit this year, (more red millions predicted next year) and slowly patients and patient services are disappearing right before my blurry eyes!!!
I think being on Oahu (main island here) where they have a half-dozen quality hospitals might give me the relief and treatment I should get for the amount of money I pay for insurance!!! I can't move as I am locked into tenure here and money doesn't grow on palm trees.
Without my loving wife and Connecticut family I would be dead. My God, what a rant! Sorry!
once again it only printed the last 1/8 of my reply. Updated to iOS 8 on my iPad. Cause?
I recommended that everyone get the package insert that comes with your medicine(your pharmacist gets it in the box the meds come in).go home and read it in itās entirety. Tou will be better informed. Then you can ask your doc if he deviates from the recommendations, especially those relating to side effects and drug interactions as well as proper doses and intervals ā and why!
Geepster said:
my neuro is great but not as informed as he should if he is to properly treat this chronic and protean disease. Once again, thanks for all the info and the personal story.
estaban said:
- 240 grams of IvIGg / month
- given bi-monthly @120 grams over 3 days
- 40 grams infused each session
- total days each month of infusions = 6
- infusion rate (I request this) is 5-6+ hours / infusion
- #21 or 22 needle
- 80 - 100 fluid ounces of vitamin water each session
- 2400 mg total / day of Tylenol, 1200 mg taken 2 hours before infusion
- 3.6k-4.2k gabapentin taken each day
- 100 mg total of Imuran each day, 50 mg 2x / day
- 50 mg bendyril injection every four hours (as requested by me) per session
- lidocane for each needle stab, no exceptions. I am adverse to needle that hurt me!
>look for Drew's story about CIDP (Google it). He did statical analysis, he is a professional mathematician.
I have had two different providers of IvGg and two very different results over the past 24 months.
Kaiser (a non-profit, for-profit corporation!), who, using an outpatient clinic, provided me with effective treatment and SOPs (standard operating procedures) that were always of a high standard regarding continuity of care and follow up.
Blue Criss-Cross ( my current treatment/infusions are now in a hospital setting) provides me the same basic protocols as Kaiser, but not of the same level of nurse professionalism, CIDP understanding and concern.
With the strict Kaiser SOPs I never had side-effects, hematomas or vein-valve problems. In other words, Kaiser infusion sessions worked (until I was arrested for a bogus bomb threat and denied Kaiser coverage, garr &*& #%* (!)#% !)
My Blue Criss-Cross treatment is in the surgical ready room at a hospital. I am assigned the bed I want, the infusion duration, needle size, stab location,etc., But now I am beginning to wonder if my choices for comfort and for avoiding side effects are causing me the problems I now have. These are serious side-effects, one of which almost killed me (Autonomic dysreflexia (AD), also known as autonomic hyperreflexia).
My fear of side effects (headache, vomiting,etc.) made me ask for longer infusions, but a travel nurse (another set of problem) read the instruction off the IV bag yesterday, saying that my IgGg should be used in 4 hours, but I always asked for six hours + to avoid side-effects. And I now wonder if I am getting an effective dose of IgG. Is it my mistake or theirs?
I've learned that 200 g / month does cut it for me, but then again, maybe I'm wrong about this also. Perhaps a lesser dose, every week is the answer.... ?
I am now being told that because of the amount of needle stabs to my veins that my veins are receding deeper into my arms and are harder to find, that more vein-valves are somehow appearing at smaller distances in my veins, and eventually I might need a catheter.
I get IvIGg every other week. The three days of infusions are usually given to me on Tu, Wed, Fri., from 8am to 3pm and they provide me with 10 days of relief from the horrible symptoms of CIDP. These are rigid muscles, cramps, and a variety of strange sensory nerve problem (http://www.neurosymptoms.org/#/sensory-symptoms/4533052274)
The benefit of IgG tapers off over 10-11 days, but at times fails me completely... mostly in the realm of leg/neck muscle leg strength. I have axonial damage to my right hand ulnar nerve, left leg tibial nerves and I doubt they'll ever return (although my PT says they might). I have anatomical PN which has discombobulated my bladder and bowels, however, I did not have these problems with Kaiser care... but like I mentioned, Kaiser tossed me in jail in a paranoid reaction from a new appointment clerk who heard me mutter to myself about my state of pain; resulting in a felony terrorism charge (later reduced to a petty misdemeanor, six-mouths probation and a $105 fine). This past year of stress, brought on by their knee-jerk reaction to a utterance I made before an infusion... long story, but I think they may have brought on so many of the side effects I now suffer, not realizing CIDP is in the realm of MS, even ALS in ways.
I am now told by my new neuro that my CIDP is BAD, and that he needs to consult neuros on other island...
NEVER live in Hawaii if you have serious or chronic disease!!! I see it in his eyes that he is confused about how to proceed. And yet, when I try to navigate my own way to what I think are the best treatments, intervals for infusions, amounts, etc, I run into this new Blue Criss-Cross of regulations regarding IgG amounts and procedures ... it has become like the Office of Circumlocution from that Dickens novel, Little Dorrit... with Franz Kafka writing the screenplay of my life.
I am convinced that constant swimming, small-weight work outs, walking on a flat area for three mile each day, super-meditation and proper diet can mitigate the ravages of demylinization's wrap and unwrap, their Mephostophiloan onslaughts.
All CIDPers need to ask the question you are asking and we need to get this disease cured! Fifteen years I suspected CIDP, have been diagnosed for only three and the entire thing has been a misadventure of errors from insurance providers and medical evaluations of sub-par neurologist. Now I am dealing with a hospital setting of indifference, negligence where I am relegated to lesser outpatient status... if it were MS I suffered, I know it would be very different. One stab ( that often turns into 5-6), then on with the machines, taking of the vitals and then offf the nurses run to yak and yak at the nurse's station. I am an easy patient, but the little details for CIDP treatment are slowly being disregarded. Maui Memorial Hospital is operating in the red, at a $46+ million deficit this year, (more red millions predicted next year) and slowly patients and patient services are disappearing right before my blurry eyes!!!
I think being on Oahu (main island here) where they have a half-dozen quality hospitals might give me the relief and treatment I should get for the amount of money I pay for insurance!!! I can't move as I am locked into tenure here and money doesn't grow on palm trees.
Without my loving wife and Connecticut family I would be dead. My God, what a rant! Sorry!
You just take care of yourself right now. You and/or your Dr. Need to provide the Medical Aide with reprints of the latest science proving the effectiveness of the infusions. The latest update articles summarizing the disease and itās treatment are in 2014 at a site called āUpToDateā.
seadog said:
Sorry Geepster. I canāt help you with your problem BUT I also lost my first discussion message when I previewed it. Must be a bug in the program.
I have my next appointment with the Neuro on the 20 Nov when I expect he will advise me to go onto IVIg but not sure whether the Medical Aid will cough up the money as it is a smig expensive
I missed my IVIG, too, this past Friday. I came down with a head cold and had been treating it with Nyquil and a humidifier and I thought I was doing ok with it. Saw Neuro on Thursday wanting him to up my dosage of IVIG, which he did by 200mg and increased the frequency to twice monthly. At the time, I was also having gastroparesis going on and was well, miserable. Sed rate was high and I had a week long right sided headache from that. On Friday while at work, I started to feel worse and was just about to leave for my infusion when I fainted. I guess if one is going to faint, it's best to do it in front of other nurses and doctors. It was determined that I was dehydrated and after a unit of fluids, I was back on my feet, but they said I couldn't get my IVIG, but was given some steroids, low dose, (which I despise) instead which DID make my headache go away. So now, once I get back on schedule, I will be getting 600mg/kg of IVIG twice monthly because I was noticing it wasn't lasting the full 3 weeks and I have to go back for tests about the fainting and gastroparesis. One regular sized sandwich makes me look 7 months pregnant in a matter of 30 minutes and then I can't eat/drink for another 18 hrs or so and that combined with the Nyquil is how I became dehydrated. My symptoms normally are weakness, fatigue, generalized pain and a burning/stinging pain that can bring me to tears, & vertigo.
i admire your fortitude. Continuing to work with CIDP and all the other stuff that's going on with you takes real courage. When a famous Theologist was going blind, he was asked : "How do you define courage?" he answered " Courage is not the absent of fear but the ability to act and move forward despite the fear!" You and others like you, are truly courageous. keep it up. We are here to lean on and support you in any way we can. Thanks for the info about your Rx regemine. Do they attribute your gastroparesis to the autonomic effects of CIDP and does it respond to any of the Rx?
Sunshine said:
I missed my IVIG, too, this past Friday. I came down with a head cold and had been treating it with Nyquil and a humidifier and I thought I was doing ok with it. Saw Neuro on Thursday wanting him to up my dosage of IVIG, which he did by 200mg and increased the frequency to twice monthly. At the time, I was also having gastroparesis going on and was well, miserable. Sed rate was high and I had a week long right sided headache from that. On Friday while at work, I started to feel worse and was just about to leave for my infusion when I fainted. I guess if one is going to faint, it's best to do it in front of other nurses and doctors. It was determined that I was dehydrated and after a unit of fluids, I was back on my feet, but they said I couldn't get my IVIG, but was given some steroids, low dose, (which I despise) instead which DID make my headache go away. So now, once I get back on schedule, I will be getting 600mg/kg of IVIG twice monthly because I was noticing it wasn't lasting the full 3 weeks and I have to go back for tests about the fainting and gastroparesis. One regular sized sandwich makes me look 7 months pregnant in a matter of 30 minutes and then I can't eat/drink for another 18 hrs or so and that combined with the Nyquil is how I became dehydrated. My symptoms normally are weakness, fatigue, generalized pain and a burning/stinging pain that can bring me to tears, & vertigo.
for me its:
45mg of Gammaplex a day for 5 consecutive days every 3 months
Protocol
60mg/hr for 15 minutes
120mg/hr for 15 minutes
240mg/hr for 15 minutes
480mg/hr for remainder with full obs every 15 minutes (which gets old very quickly)
delivered through a midline catheter as after 12 years the veins in my hands are shot
Im also on 100mg pregabelin twice a day
the IVIG leaves me with Aseptic meningitis every single time which can last 3 days or 3 weeks and my hands and feet peel all over and are left itching and sore, but that's a small price to pay for the improvement I normally experience although these days its not as long lasting as it used to be. I too experience different degrees of gastropersis which is no laughing matter when you go to bed 4 hours after last eating and feel like you have just had a three course meal
I so appreciate your input and sharing the aseptic meningitis and gastroparesis that you unfortunately experience. This info will help more of us than you may realize. Hang in there bill2503.
bill2503 said:
for me its:
45mg of Gammaplex a day for 5 consecutive days every 3 months
Protocol
60mg/hr for 15 minutes
120mg/hr for 15 minutes
240mg/hr for 15 minutes
480mg/hr for remainder with full obs every 15 minutes (which gets old very quickly)
delivered through a midline catheter as after 12 years the veins in my hands are shot
Im also on 100mg pregabelin twice a day
the IVIG leaves me with Aseptic meningitis every single time which can last 3 days or 3 weeks and my hands and feet peel all over and are left itching and sore, but thatās a small price to pay for the improvement I normally experience although these days its not as long lasting as it used to be. I too experience different degrees of gastropersis which is no laughing matter when you go to bed 4 hours after last eating and feel like you have just had a three course meal
Thank you. I also have MS so it is hard for anyone to really say what is contributed to one disease vs. the other. I'm just one big ball of demyelination of nerves. Not sure about the gastroparesis...going in for tests for that this Friday, or should I say tests to rule out other things going on in my abdomen. I'm thinking it is autonomic dysfunction. A doctor that I work with said it could be from all the meds that I take. I have an ice cream bucket full of Rxs. He also thinks I now have adrenal insufficiency going on. The neuro gave me a Rx for Reglan (metoclopramide) for the GP, but I lost it...UGH!! He also gave me another Rx for Compazine to help with the side effects of the Reglan. The nice thing about this community is that it is diverse. I hope you find some combination of meds and treatments that work for you. Take care!
Geepster said:
i admire your fortitude. Continuing to work with CIDP and all the other stuff that's going on with you takes real courage. When a famous Theologist was going blind, he was asked : "How do you define courage?" he answered " Courage is not the absent of fear but the ability to act and move forward despite the fear!" You and others like you, are truly courageous. keep it up. We are here to lean on and support you in any way we can. Thanks for the info about your Rx regemine. Do they attribute your gastroparesis to the autonomic effects of CIDP and does it respond to any of the Rx?
Sunshine said:I missed my IVIG, too, this past Friday. I came down with a head cold and had been treating it with Nyquil and a humidifier and I thought I was doing ok with it. Saw Neuro on Thursday wanting him to up my dosage of IVIG, which he did by 200mg and increased the frequency to twice monthly. At the time, I was also having gastroparesis going on and was well, miserable. Sed rate was high and I had a week long right sided headache from that. On Friday while at work, I started to feel worse and was just about to leave for my infusion when I fainted. I guess if one is going to faint, it's best to do it in front of other nurses and doctors. It was determined that I was dehydrated and after a unit of fluids, I was back on my feet, but they said I couldn't get my IVIG, but was given some steroids, low dose, (which I despise) instead which DID make my headache go away. So now, once I get back on schedule, I will be getting 600mg/kg of IVIG twice monthly because I was noticing it wasn't lasting the full 3 weeks and I have to go back for tests about the fainting and gastroparesis. One regular sized sandwich makes me look 7 months pregnant in a matter of 30 minutes and then I can't eat/drink for another 18 hrs or so and that combined with the Nyquil is how I became dehydrated. My symptoms normally are weakness, fatigue, generalized pain and a burning/stinging pain that can bring me to tears, & vertigo.
A reminder to all to always double check everything when you get your infusions. I saw my neuro a few weeks ago and he raised my IVIG from 70 grams per month to 80 grams. I went in today for my regular monthly infusion (I go for two consecutive days with half the total each day) and I noticed the IV bag was bigger than normal. I asked the nurse to double check. Turns out the neuro office wrote the order wrong. They were going to infuse 80 grams each of the 2 days for a total of 160 versus the 80 it should have been. They ended up infusing half the IV bag and had to throw away the rest. What a waste.
Keep us updated and ask tons of questions ----- like I need to say that.
Sunshine said:
Thank you. I also have MS so it is hard for anyone to really say what is contributed to one disease vs. the other. Iām just one big ball of demyelination of nerves. Not sure about the gastroparesisā¦going in for tests for that this Friday, or should I say tests to rule out other things going on in my abdomen. Iām thinking it is autonomic dysfunction. A doctor that I work with said it could be from all the meds that I take. I have an ice cream bucket full of Rxs. He also thinks I now have adrenal insufficiency going on. The neuro gave me a Rx for Reglan (metoclopramide) for the GP, but I lost itā¦UGH!! He also gave me another Rx for Compazine to help with the side effects of the Reglan. The nice thing about this community is that it is diverse. I hope you find some combination of meds and treatments that work for you. Take care!
Geepster said:i admire your fortitude. Continuing to work with CIDP and all the other stuff thatās going on with you takes real courage. When a famous Theologist was going blind, he was asked : āHow do you define courage?ā he answered " Courage is not the absent of fear but the ability to act and move forward despite the fear!" You and others like you, are truly courageous. keep it up. We are here to lean on and support you in any way we can. Thanks for the info about your Rx regemine. Do they attribute your gastroparesis to the autonomic effects of CIDP and does it respond to any of the Rx?
Sunshine said:I missed my IVIG, too, this past Friday. I came down with a head cold and had been treating it with Nyquil and a humidifier and I thought I was doing ok with it. Saw Neuro on Thursday wanting him to up my dosage of IVIG, which he did by 200mg and increased the frequency to twice monthly. At the time, I was also having gastroparesis going on and was well, miserable. Sed rate was high and I had a week long right sided headache from that. On Friday while at work, I started to feel worse and was just about to leave for my infusion when I fainted. I guess if one is going to faint, itās best to do it in front of other nurses and doctors. It was determined that I was dehydrated and after a unit of fluids, I was back on my feet, but they said I couldnāt get my IVIG, but was given some steroids, low dose, (which I despise) instead which DID make my headache go away. So now, once I get back on schedule, I will be getting 600mg/kg of IVIG twice monthly because I was noticing it wasnāt lasting the full 3 weeks and I have to go back for tests about the fainting and gastroparesis. One regular sized sandwich makes me look 7 months pregnant in a matter of 30 minutes and then I canāt eat/drink for another 18 hrs or so and that combined with the Nyquil is how I became dehydrated. My symptoms normally are weakness, fatigue, generalized pain and a burning/stinging pain that can bring me to tears, & vertigo.
Personally, I get 50gm on each of three mostly consecutive days ā and I always check. Itās easier now that my Gamunex comes in small bottles. MY NEURO CALLED ME TODAY! We discussed boosting the dose from 150 Gm to225 split every other week, over 2-3days. He also added the dose I missed b/c of s vere cramps. He said subq infusion might be better for me and more effective. Your collective thoughts on that??? I thought results were about the same.
Rfisher7381 said:
A reminder to all to always double check everything when you get your infusions. I saw my neuro a few weeks ago and he raised my IVIG from 70 grams per month to 80 grams. I went in today for my regular monthly infusion (I go for two consecutive days with half the total each day) and I noticed the IV bag was bigger than normal. I asked the nurse to double check. Turns out the neuro office wrote the order wrong. They were going to infuse 80 grams each of the 2 days for a total of 160 versus the 80 it should have been. They ended up infusing half the IV bag and had to throw away the rest. What a waste.
I receive 160 grams of Gammagard liquid every three weeks. I have the infusions over two days as an outpatient so it's 80 grams per day. I have benedryl, Zofran, and Tylenol or Norco as premeds. I also receive one liter of saline for hydration following the infusion each day in an attempt to prevent terrible migraines / aseptic meningitis (headaches and vomiting that sometimes make me sick for days after the infusion and land me in the ER). I have tried a number of preventative measures and treatments for the side effects from the infusions with little success.
I have been receiving Ig for about 1.5 years. Initially, after the loading dose, it was every 6-8 weeks. I felt much better for about 2.5 to 3 weeks, then like I was getting sick anew. This was a very depressing, terrible cycle really because I would have an infusion and feel like there was hope and some improvement only become very ill again. Eventually, I learned that some people do need more frequent infusions and asked for this. I moved to infusions every 4 weeks then to every 3 weeks and now, no terrible decline between infusions.
Thanks for sharing, Joy. Every 3 weeks seems like a pretty typical history according to the people who responded except that your neuro seems very informed and cooperative --- as do you. Fortunately for me, with 48 hour pre-infusion oral hydration with Zero diluted 50/50 with water (1-2 bottles a day), tylenol, and benadryl, I've been able to sidestep the side effects. I wish the same or similar for you! On the prayer list you go Joy, if you don't mind.
I'm pushing my neuro to increase my 150 Gm over three days to 225 Gm divided between 4 days/Mo.: 2days every 2 weeks so I can get relief most of the time. He doesn't seem to understand that it wears off in 10-14 days so I sit, deflated, waiting for the next infusion. I rely on the relief from gabapentin 400 tid , tylenol, and an occasional hydrocodone to keep my pain bearable in the interim. The hydrocodone Rx lasts more than 3 mos. so there's no dependency problem there. I worry more about my liver since I also have Hepatitis C from which my autoimmune reaction began --- leading to the CIDP.
I get 70 grams every other week I am no longer blistering or collapsing veins by changing product and not going every week.
Geepster,
I'm on 40 gms/wk infusion that's done by a visiting nurse at my house. I have a modified PIC line so it's minimally invasive. I tolerate the IVIG very well with minimal side effects. I do get short-term benefits where I feel stronger, have more range of motion and more energy which typically lasts 5 to 7 days. I've been on this regimen since early September. Overall my condition has continued to deteriorate. When I started I was in a wheelchair and beginning to have upper body weakness, particularly in my hands, wrists, arms and core. The upper body weakness has continued to get worse. So my doctor has started me on weekly Neupogen injections about a month ago.
Hope this helps.
Elbie
Aloha,
As to dosing, recommend this pdf to your neuro, as it explains IgG durations to dose, etc.
http://onlinelibrary.wiley.com/doi/10.1002/mus.24526/pdf
Elbie said:
Geepster,
I'm on 40 gms/wk infusion that's done by a visiting nurse at my house. I have a modified PIC line so it's minimally invasive. I tolerate the IVIG very well with minimal side effects. I do get short-term benefits where I feel stronger, have more range of motion and more energy which typically lasts 5 to 7 days. I've been on this regimen since early September. Overall my condition has continued to deteriorate. When I started I was in a wheelchair and beginning to have upper body weakness, particularly in my hands, wrists, arms and core. The upper body weakness has continued to get worse. So my doctor has started me on weekly Neupogen injections about a month ago.
Hope this helps.
Elbie
Thank you Elbie, Robert M. And Estaban. These variations and ancillary medications really help provide us with a mini-database of the variable ways of receiving treatment. Estaban, thanks for the article.
estaban said:
Aloha,
As to dosing, recommend this pdf to your neuro, as it explains IgG durations to dose, etc.
http://onlinelibrary.wiley.com/doi/10.1002/mus.24526/pdf
Elbie said:Geepster,
Iām on 40 gms/wk infusion thatās done by a visiting nurse at my house. I have a modified PIC line so itās minimally invasive. I tolerate the IVIG very well with minimal side effects. I do get short-term benefits where I feel stronger, have more range of motion and more energy which typically lasts 5 to 7 days. Iāve been on this regimen since early September. Overall my condition has continued to deteriorate. When I started I was in a wheelchair and beginning to have upper body weakness, particularly in my hands, wrists, arms and core. The upper body weakness has continued to get worse. So my doctor has started me on weekly Neupogen injections about a month ago.
Hope this helps.
Elbie