IVIG frequency ?
January 9, 2012 at 10:13 pm
Hello everyone.. I am awaiting my first IVIG maintenance dose after my first loading dose over 3 weeks ago now.. I noticed my symptoms returning again about 2-3 days before it was officially 3 weeks. My dr ordered it last thursday, but there was a mess up/miscommunication between them and the infusion company ugh. so now they are supposed to “straighten” it up tomorrow, but I’m a little concerned that we will be 4 weeks out or around there by the time I get my first maintenence dose..
Will going that long affect the effectivenss of the IVIG dose, or should I get another loading dose?
Thanks for any advice, just curious everyone’s experience. If this dose doesn’t help me as much as I am hoping, I’m not sure if it could be due to the time that has passed since loading dose. THanks in advance!
January 10, 2012 at 9:08 am
As you read and learn about CIPD and IVIG you will see that every one is different and react different to treatment. For me after three years I give my infusion center the dates I want and need. I get mine every 28 days +\- one or two days. Any more and I lose ground. About a week prior I start feeling a little worse and up to a week after but then will be OK for the remainder. My guess it will take some time to find your groove.
February 6, 2012 at 12:25 am
It is not uncommon for the IVIg dose and frequency to need adjusting. You don’t say what the doses are. Perhaps you need more a larger dose than typical to show a response. If you and your insurance can afford it, it would be reasonable to try 2 g/kg every two or three weeks for three or four months before deciding IVIg does not work. Emily, a very young girl when she came down with an unusual presentation of CIDP, needed very large doses very often to stop and then reverse her symptoms. It was an unusual regimen, but it worked for her.
Godspeed in finding a treatment that is effective for you,
AnonymousFebruary 6, 2012 at 7:24 pm
I’ve been getting IVIG 25 gms for the past 1 1/2 years every 10 days. Does IVIG ever lose it’s effectivenss or is there any point in time where you body needs more? I get the 0.4 gms/kg dose. How is the 2g/kg come about? I”ve never heard of the dose amount. I think my doctor doesn’t want to increase my dose because it may spill into my kidneys. I am doing okay on my 25 gm dose; but I don’t feel as good as I did before. I still has the fatigue and the electric shocks. Is IVIG suppose to help w/ these issues? Isnt the myelin suppose to be regenerating and I shouldn’t have these problems?
February 8, 2012 at 4:23 am
The 2 g/kg dose is what is often called the “loading” dose. It is just 0.4 g/kg given for five days straight as the first line treatment. If there is improvement, more IVIg, with a dose and frequency dependent on your clinical response, is usually administered. If you have kidney problems, there are good reasons for limiting the dose. However, a slow step-up in dose, along with blood and urine tests to monitor your kidneys might allow you to determine if 1 g/kg might not bring improvement without kidney damage.
Godspeed in finding a treatment to improvement your symptoms,
AnonymousFebruary 11, 2012 at 9:43 pm
I’m getting the impression you’ve been at this for a while.
I weigh 215 and have gotten 60gr every two weeks since november.
I began with that amount as a loading dose getting 3 infilusions
within a 10 day window, then every 2weeks since. I only felt
disease progression. Both strength and sensory. My doctor said
That sensory symptoms are not addressed in the treatment
only strength. I am not sure why that is? I feel like there is a lot
I am not aware of regarding this condition.
I also wonder how much my HMO is controlling this dosing thing
I think my doctor knows more about this disease than most
neurologists, but I don’t trust the healthcare system we all
I also have no barometer about what to expect from treatment.
Results seem to be all over the board. I think I caught it early, 8 months after I noticed
symptoms, but it only seems to feel worse.
Does anyone know how often this reaches the autonomic system?
I’ve got something going on in my chest that theGre doesn’t seem to be
any related cause for…
Any links to clinical research on IVIG treatment and results?
I feel like I’m out on a limb trying to figure out the next move.
February 11, 2012 at 11:22 pm
I have been diagnosed with CIDP for 6 1/2 years, so I have been at it a while. My main treatment is plasma exchange, but I did some research into IVIg. The European Federation of Neurological Societies and the the Peripheral Nerve Society have published these guidelines: http://www.pnsociety.com/Guidelines_CIDP.pdf. There are divergent views about treatment, of course, even among the doctors considered experts on CIDP, but this is a good place to start.
As far as your treatment goes, I think that it is close to the guidelines. You get 0.615 g/kg every two weeks. The guideline for maintenance is 1 g/kg every three weeks. That works out to nearly the same amount of IVIg. However, it is not working for you. I would not be unreasonable to try 1 g/kg every 2 weeks, or even to repeat the loading dose. Your initial loading dose seemed like it was a bit on the low side, 1.85 g/kg, and was administered over slightly too long a period. I mention it just for thoroughness; I am not sure I would make an issue of it with my doctor.
The sensory symptoms seem to be harder to treat and slower to respond to treatment. However, if you gain your strength back, there is a good chance that your sensory symptoms will abate some.
Treatment for some can be very effective very quickly. For others, no treatment works well at all. Nobody knows why. The best you can do is press you doctor for aggressive treatments. Ironically, though, you also have to be patient and allow time for the treatments to work. You have been at IVIg in a more or less normal protocol for three months. It is time to step it up to something more aggressive and give that another three or four months. If that does not work, it is time to try plasma exchange, corticosteroids, immunosuppressants, or some combination.
What worked best for me was a combination of plasma exchange, immunosuppression with azathioprine (Imuran), and a blast of prednisone, followed by a taper.
Godspeed in finding an effective treatment.
AnonymousFebruary 18, 2012 at 10:53 pm
Saw the Doc this week and lo and behold there seems to be
good improvement. Although if he hadn’t seen it I would not
have known because of the fatigue and sensory stuff I am still
experiencing. At least now I can feel more confidant that I have
avoided permanent nerve damage and can move forward and hope
that the sensory stuff fades away too. He keeps telling me that sensory
symptoms are not treated just motor/strength.
I don’t know why that is because sensory issues can significantly affect quality
of life. Well I am at least in a better place with some hope to go forward with.
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