Hi to you all over the world.
Can any of you help with this one…
I’ve been having 4 days, 30mgms immuoglobulin, every 5 weeks for the last 4 years.
I recently saw a different Neurologist who was suprised with the high dosage over so many days.
He suggested that I should now be on a much lower. ‘Maintainence’ dosage over far fewer days.
What do others manage on?
I look forward to hearing from all you survivors who still keep a positive slant on life…
G'Day Mate....My dose is based on my weight. 100 kilos (220 lbs) and go in every 4 weeks for the infusion for the last 1 and half years. My loading dose was for 3 days, not sure of the volume.
I put the link for our IVIG (Australia) for you.
Cheers
The optimal dose and frequency of administration of Intragam®
P must be determined for
each patient. Freedom from recurrent bacterial infections is usually achieved with a serum
IgG level above 5 g per litre. Most patients receive a dose of 0.2 to 0.6 g IgG per kilogram
body weight per month, either as a single dose or as two equal doses at fortnightly intervals.
Following initial diagnosis, higher doses (0.4 to 0.6 g IgG per kilogram body weight per
month) may be required for several months to provide rapid protection against recurrent
infections. Adjustment of both dose and infusion interval is empirical and should be based on
the patient’s clinical state and the pre-infusion IgG level.
http://www.csl.com.au/docs/800/415/Intragam%20P_AU_PI_11.00%20(supplied)%202.pdf
I was on the kind of regime you are on Jackie but only for the first few weeks of treatment.My dose has varied but I have been maintained on 40mgs every 4 weeks for 4 out of 6 years so my experience in the UK supports what the different neurologist told you.
My consultant is very open to suggestions,is pragmatic and supports whatever works for each individual.I think that is probably the point I'd like to make-even though we all have the same condition we are all different individuals.In other words what suits you might not suit me.
If your current regime keeps you well,that's what matters.
Good luck.
I weigh 120 pounds and I get 35 mg of Gamunex C (5% solution) every 28 days for my holding dose. I have been at this dose for 3 years and it keeps my symptoms at bay. If I go much over the 28 days my symptoms return. I get my infusions at home and we have just upped the rate from 150 to 175 mls per hour so my infusion is about 3 hours. I use to go to an infusion center but I think getting it right in the comfort of your own home is less intrusive in my life.
My initial loading dose was for 5 days. My maintenance dose is 1 day every 3 weeks.
I didn’t get a starting regime. I started right off with the 1mg/kg of body weight. I received that dose every three weeks. It would take about 4 hours, and I had it done in the hospital as it was cheaper for insurance, and it seemed safer being right there. After the first 12 doses, amount covered by insurance, I went back to the Neurologist, and we discussed lowering the dose as I had a lot of flu like symptoms most of the time. While I waited for insurance to agree to cover the next series, I went for about 2 months without any, and that was not good either, as I felt worn down. So we agreed to try .4mg/kg. it was better than none, but still not good. So we went to .6mg/kg of body weight. This seems to be the best dose I have had so far with regards to the balance of reward, feeling good, compared to the side effects. I have been doing it now for 6 times and this time I have only had 2 days where I was down, flu like symptoms and the need to sleep. After I finish this round, I am going to ask if we can go to .7mg/kg. for me, I think that will be the magic number. As has been said, we all seem to have a lot of personal variability, so unfortunately there doesn’t seem to be a magic bullet, but hopefully this gives you some guidance as to what will work for you… Good luck
Hi, The highest dosage for each individual is predicated on weight, I think. I get 70 mg every three weeks. My dose was recently raised to 70 and there has been improvement. Sometimes your Dr. has to try different dosages, different frequencies, etc. until you get the right one. It takes time and patience. Good luck !!!!!!!!!!!!!
I receive 126g every 2 weeks. This is the largest dose of anyone at the infusion center. I started with this dose one year ago. I weigh 280 pounds.
Re: confusion over Ivig infusions. I had an initial 4 day Ivig treatment at 30 mg of Flemagamex. Most people on this site have received Gamunex C. Does anyone know what the difference is: Cost, availability? I am not on any schedule and am supposed to let my neuro know when I am feeling a need for it. I had 1 booster ivig 2/12 mos later,3 more over 3+ mos later,and 2 more 2+ mos later. Every time I must persuade my neuro that I am losing strength and stamina, it's almost like I must justify my need to him. Most folks dose is based on their weight I have been told.
I just went on Medicare and wondered if anyone gets their treatments using this for their infusions? How much is the cost and is it still done at an infusion center? Good luck,faith and hope to all of us. Pumpkin
I
Pumpkin said:
Re: confusion over Ivig infusions. I had an initial 4 day Ivig treatment at 30 mg of Flemagamex. Most people on this site have received Gamunex C. Does anyone know what the difference is: Cost, availability? I am not on any schedule and am supposed to let my neuro know when I am feeling a need for it. I had 1 booster ivig 2/12 mos later,3 more over 3+ mos later,and 2 more 2+ mos later. Every time I must persuade my neuro that I am losing strength and stamina, it's almost like I must justify my need to him. Most folks dose is based on their weight I have been told.
I just went on Medicare and wondered if anyone gets their treatments using this for their infusions? How much is the cost and is it still done at an infusion center? Good luck,faith and hope to all of us. Pumpkin
I
pumpkin, I have had my IVIG treatments while on Medicare, no problems, but don't know how it well be this year, don't know if it will be affected by OBAMACARE.
MAMABEAR
The best thing to do is go on the manufacturers website. Usually on this website, it will have initial dosage and maintenance dosage. If it does not, it will have a toll free number. Call and ask. It is up to each individual and their doctors but this will give you a general idea. It is based on weight and response of each patient.
Jackie,
I weigh 165 lbs. (75 Kilos) and my dosage is 35 mg. each day over 2 days every 3 weeks, so 70mg every three weeks over 2 days to be clear. It works good for me as I can tell a few days before infusions that I an due.
Skiptech said:
Jackie,
I weigh 165 lbs. (75 Kilos) and my dosage is 35 mg. each day over 2 days every 3 weeks, so 70mg every three weeks over 2 days to be clear. It works good for me as I can tell a few days before infusions that I am due.
I was diagnosed July 2013. I,m on Medicare and medicaid. First and second months 5 days in a row 5 hours at a hospital infusion center. Then qualified to have them at home, still working on a schedule that will be more helpful. I,m not certain I actually have cidp because the only thing I can tell that might be helping a little is reduction of inflammatory pain in the morning. I don,t have severe symptoms like some have, but have experienced pain and other nerve, muscle issues for decades. I just wish there was a more definite way to know if this diagnosis is correct in my case. Anyway hues, Medicare, Medicaid are helping with cost but I think maybe only cor 3 years.
Pumpkin said:
Re: confusion over Ivig infusions. I had an initial 4 day Ivig treatment at 30 mg of Flemagamex. Most people on this site have received Gamunex C. Does anyone know what the difference is: Cost, availability? I am not on any schedule and am supposed to let my neuro know when I am feeling a need for it. I had 1 booster ivig 2/12 mos later,3 more over 3+ mos later,and 2 more 2+ mos later. Every time I must persuade my neuro that I am losing strength and stamina, it’s almost like I must justify my need to him. Most folks dose is based on their weight I have been told.
I just went on Medicare and wondered if anyone gets their treatments using this for their infusions? How much is the cost and is it still done at an infusion center? Good luck,faith and hope to all of us. Pumpkin
I