High Dose IVIG (resistant?)

I’ve had just 8 doses of IVIG during my experience so I wasn’t on it long enough to build any kind of tolerance.

However, if you are indeed building up a tolerance to IVIG perhaps your doctor should consider plasmapheresis treatments.

They’re not exactly a ton of fun but there’s no question my body responded much better with plasmapheresis treatments than it did with IVIG.

Lori

how long have you been on IVIG ? i was dx with gbs at the end of may, and treated with ivig , i relapsed in july and again in august both times treated to 5 days of ivig.been dx as cidp now. my neuro now has me on a 100 grams of ivig every two weeks to keep the symtoms at bay. along with 50mg prendisone daily.

so i too am wanting to know if we build up a resistance to ivig ?

Thanks Roland

You are on the same path as me….

I was on .4 of IVIG (standard dose) from Jan. ’08 till July ’09 – 5 straight days every 5-6 weeks. The 5-6 week period creeped down to 4-5 and finally 4 weeks max between treatments. I was also on Prednisone during 90% of that period.
In July 2009 I was switched to .8 grams and also weaned off Prednisone by then. I realized increased strength and stretched my symptoms (and required treatments) back out to 6 weeks.
I continued for 1 year on .8 when one of my Dr.’s reduced me back to .4 grams. Well I had to rush back into the Infusion center in less than 4 weeks due to rapidly failing muscles and pain.
My primary Neuro has bumped me back to .8 so I’m assuming I’ll be back to around the 6 week mark.
I never asked my Neuro (just saw her yesterday) if it was a build up of resistance to the medication, but I will next time I see her.
I have never had Plasmatheresis, as it is not done very often around here and I keep hearing it has the exact same result as IVIg.

[QUOTE=zbrd]
I have never had Plasmatheresis, as it is not done very often around here and I keep hearing it has the exact same result as IVIg.[/QUOTE]

———

What town do you live in Northern Indiana? I live in Northwest Indiana myself. Merrillville.

You’re right about plasmapheresis. It’s not done very often and it is supposed to have a similar effect.

But it worked much better for me than IVIG did. Some people just simply respond better with one treatment over another.

I had 13 of them total. 7 of them while in the hospital and then 6 more over a span of 6 months and that was it. No more scheduled maintenance treatments.

Now I’m just on Cellcept and that’s it. I’m hoping that alone will do the trick but we’ll have to see. There’s really no way to know for sure.

I don’t have any lingering effects from CIDP at all. Maybe I’m just lucky (that is, if you want to label someone with CIDP lucky) or maybe it’s a combination that could work better for you as well.

I’m certainly no expert with this. I can only report my own experience.

[QUOTE=Lori McCormick]Dear All,

Just wondering if any of you have built up a resistance to IVIG? My doctor has recently increase my infusions to 80 g every two weeks after my symptoms started to worsen. Anyone else receive this high a dosage?

Best Regards,
Lori[/QUOTE]

Yes, I do. It’s unlikely a “resistance” to IVIG, but the sxs of CIDP increasing.
I have been on IVIG for almost 7 years & just had my dose increased 2 months ago for the first time. We do 3gms/kg now, instead of 2 gms/kg, every 4 weeks.

In the medical field (sorry, I am an RN), the word “symptoms” is abbreviated sxs.

[QUOTE=Lori McCormick]”but the sxs of CIDP increasing.”

What does sxs mean? Do you really think that the disease is worsening that is why I needed an increase in IVIG.

Thanks for your response.
Lori[/QUOTE]

Sorry, in the medical field (I am an RN) the word symptoms is abbreviated “sxs”.

Yes, I do believe — based on my medical experience and personal experience that your symptoms have increased, therefore necessitating an increase in IVIG dosing. I did “better” on my previous dose for several years, it wasn’t until recently that we increased the dose and my clinical exam after 2 months of increased dose was much better (fewer sxs such as neuropathies, & weakness, got stronger, better reflexes, etc.).

I am also basing it primarily on exactly what you said in your post:
[COLOR=”Red”]
[quote]My doctor has recently increase my infusions to 80 g every two weeks after my symptoms started to worsen. [/quote][/COLOR]

I have heard of the body building a tolerance to IVIG infusions in relation to side effects diminishing, but never regarding effectiveness of the drug for symptomatic control. Unless, I suppose you have had a sudden HUGE weight loss or gain (i.e. at least 50+ pounds).

Have you done better on the increased dose of IVIG? What brand of IVIG do you receive? Have you had any recent brand changes?

Hi Lori,

I am not familiar with the use of Rituxin in detail for CIDP, and have NOT (edited) taken it, so I wouldn’t be a good person to comment on that. Sounds like your dr doesn’t think that was the cause though, as they increased IVIG rather giving Rituxin again. You might want to ask your dr his/her thoughts on that.

You’re welcome! Glad it could help as that abbreviation is seen a lot here.

Take care!

[QUOTE=Lori McCormick]Dear All,

Just wondering if any of you have built up a resistance to IVIG? My doctor has recently increase my infusions to 80 g every two weeks after my symptoms started to worsen. Anyone else receive this high a dosage?

Best Regards,
Lori[/QUOTE]

I have up to 100g of IVIG in one week for 8 wks consec. Then drop it down to 40 g a week for the next 12 weeks. I made a very good comback and was strong but I still have bad flarups yet. 16 wks ago I was totally paralized again (3 times now) but I am back up and walking around again but it is getting harder each time too come back. IVIG’S work on some people but not all. I am in slow motion now because of my balance isssue but remember just keep fighting. Dont ever give up!!!!~!

[QUOTE=Lori McCormick]Hello Roland,

How is the Prednisone? Any side effects?

I guess the question regarding “resistance” is a question for my doctor.

Thanks for your response,
Lori[/QUOTE]

Hi Lori

your asking about side effects ? yes there is a few
1 i feel weaker since ive been taking them
2 huge hunger ( i could eat near anything ) but havnt been
3 im very short tempered

i see my neuro tomorrow with a few questions.

how do you feel between your ivig top ups ? i feel like im getting to many of my symtems back.

[QUOTE=reed350]Hi Lori
how do you feel between your ivig top ups ? i feel like im getting to many of my symtems back.[/QUOTE]

Hi, I was just wondering what you meant here, reed350….you feel the steroid is giving you too many of your “symtems” (?) back?? What does that mean?
Are you feeling better or worse with symptoms?

edited to: reed350

jdunk

im getting 100g ivig every 2weeks , within that time span iv got numbness, pins and needles, weakness, in both feet legs and hands. i was in to see my neuro last wednesday and he agrees that the steriods arnt working for me and is now weening me off them.

roland

Ok. So are you going to get IVIG more frequently, or keep it at every 2 weeks?

Jdunk

my ivig is being kept at 100g every two weeks. and my neuro is getting me into see a hemotologist (spelling) .

Roland

I have been on a regimen of 80 gm IVIG every three to four weeks. My doctor originally scheduled every three weeks, but when I feel good enough, I stretch it out to four weeks. But, sometimes the symptoms seem to come back sooner, then I call and move up the date. If is pretty unpredictable.

The IVIG is administered outpatient at a hematologists office. I moved up the date on my own initiative, then asked him if that was OK. He said, “Absolutely! There is no test for this. Only you know when it is really needed. If you need it, call and get it scheduled.”

I have also starting taking a low dose (50 mg/day) Imuran and Prednisone again. The first time I took Imuran my platelet count went through the floor, but so far it is holding in there this time. The goal is that long term, they will kick in and I will no longer need the IVIG, but so far (one month) it is way too early for any effect from that.

He plans to gradually ramp up the Imuran, then wean me off the prednisone and IVIG. I have talked to one other guy who had this same treatment. It seemed to work for him. It took months for everything to equilibrate, but he has not had IVIG for 8-1/2 months, after having to get it every couple of weeks, and still seems fairly good.

In answer to your question about building up a tolerance: I think I might be doing that very slightly. The IVIG seems to take slightly longer to show a benefit. But I had it last week, and this week I feel as close to normal as I ever feel. So if I am developing a tolerance, it is very slight.