[vicstir]

Stopping IVIG / Intragram - will my immunity be OK?

by vicstir on Sat Oct 25, 2014 7:17 pm

I am scheduled to have two more infusions of Intragram (IVIG, intravenous IgG). I was wondering if, once I stop receiving it, where my immunity will be at? Will my immunity become compromised without these infusions, or in theory should it stay intact?

I am told by my doctor that at the moment my immunity is good. Which I assume is why I am being taken off it. Is my good immunity purely because of the infusions?

I was just wondering if anyone has any experience with this? Also, I am being taken off Valtrex once my prescription runs out in December.

My last blood test showed my M-spike to be staying steady between 12 and 14 g/L (1.2 and 1.4 g/dL). So the latest plan is to not treat me and watch and see. My next blood test will be in January.

Thanks Vicki

[JimNY]

Re: Stopping IVIG / Intragram - will my immunity be OK?

by JimNY on Sat Oct 25, 2014 11:45 pm

Hi Vicki,

Can you remind me again -- when were you diagnosed and with what, and what have your treatments been so far and the response you've had to them? You don't have to go into much detail. I'm just trying to understand where you're at to see if your doctor's recommendations make sense (I'm assuming they do).

Thanks.

[vicstir]

Re: Stopping IVIG / Intragram - will my immunity be OK?

by vicstir on Sun Oct 26, 2014 4:05 am

Hi Jim,

I was diagnosed October 2013 with multiple myeloma. I had induction therapy of VCD [Velcade, cyclo­phos­pha­mide, dexamethasone] (CyBorD) for four cycles followed by an auto SCT [stem cell transplant] in May 2014. I've had monthly infusions of Intragram, Zometa, and pentamadine nebulizer since diagnosis. Valtrex daily.

Since my SCT I have continued Intragram, pentamadine, Valtrex and Zometa. All except the Zometa will cease as of December.

I did not have CRAB criteria but had numerous infections which led to my diagnosis.

My SCT was in my opinion not very successful as. My m spike was 12.3 g/L (1.23 g/dL) prior to SCT and my last three m spikes have been 11.8, 13.2 & 12.6. My doctor is hopeful the SCT will hold my levels steady for a while.

Thanks Vicki.

[Dr. Heather Landau]

Re: Stopping IVIG / Intragram - will my immunity be OK?

by Dr. Heather Landau on Sun Oct 26, 2014 11:02 pm

Hi Vicstir,

While no one can know for certain whether your immune system has recovered enough that you will have adequate immunity off IVIG infusions, there are certain factors that can help us predict this – most importantly, whether your immunoglobulin levels (i.e., IgG, IgA and IgM) are in the normal range or low (also called immunoparesis). However, if you are getting ongoing IVIG supplementation (which elevates the IgG levels), we cant know if it is the supplement or your own immunity.

There are a few things that we consider when contemplating stopping IVIG:

1. How severe were the prior infections, i.e. lots of mild-moderate upper respiratory infections, or significant, severe, life threatening infections? If it were the latter, we are much more hesitant to stop IVIG.
2. Are you still having infections now?
3. How far are you out from transplant? This is important because during the early period following transplant, the immune system is further compromised. Then at 6 months after transplant, we expect the immune system to recover enough that we vaccinate patients against flu.

Since your transplant was in May, you will be > 6 months out from SCT in December when your physician plans to stop the IVIG. He / she may have insight that your immunoglobulin levels are adequate and this is not unreasonable. However, since patients with "immuno­paresis" may not provide as much protection against the flu (even with vaccination), some­times we delay stopping IVIG until after flu season (i.e., May in the Northern Hemisphere).

Lastly, the good news is that if there are signs or symptoms of frequent or severe infections after stopping IVIG, your physician can always put you back on it!

Hope this helps!

[vicstir]

Re: Stopping IVIG / Intragram - will my immunity be OK?

by vicstir on Mon Oct 27, 2014 1:26 am

Thank you Dr Landau. I appreciate you taking the time to answer my concerns.

A lot of the time when I see my doctor I don't know what to ask and think of questions later. It's great to have this community to bounce things off.

Thanks again.
Vicki

[jhorner]

Re: Stopping IVIG / Intragram - will my immunity be OK?

by jhorner on Tue Jun 16, 2015 1:11 pm

Hello,

I just came across this post and I found it very informative. I am a smoldering myeloma patient diagnosed in August 2013. I just finished a full year of IVIG after chronic and repeat respiratory and kidney infections thanks to a recommendation by Dr. Landau and it was a great year! I felt better than I felt in years.

The first 6 months of IVIG, I would feel myself getting sick when I was due for treatment. I would get swollen glands, general malaise, painful neuropathy and ear pain. Then at about the six month mark, the symptoms went away and it was as though my immune system recovered. I still have pretty significant immunoparesis of both uninvolved gammaglobulins, IgA 53, IgM 31but I feel good and I'm considering stopping the IVIG therapy due to expense.

Reading these posts I think it is worth a try! I'm sure because of the immunoparesis my insurance will authorize it again if I should need it. My biggest concern is that it will take another six months of therapy to get to where I am now. Does anyone know how long it takes for the optimal affects of IVIG treatment to take hold? Thank you.
Best
J