Advice about IVIG treatments, please?

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Zebra2014
Regular Member


Date Joined Sep 2012
Total Posts : 46
   Posted 2/16/2015 9:31 PM (GMT -6)   
Hi, Everyone -
 
Looks like I am no longer be responding to the ususal front line oral medications, and my doctor said that IVIG is an option, as well as Rituxan and Cytoxan.
 
I like the idea of a more "natural" approach of IVIG, but uncertain about its effectiveness for autoimmune disorders. I also anxious about the side-effects of the IVIG infusion. Lot's of scary warnings, but I know that's true for any drug adminstered by infusion. Aside from risk of infection, the long-term side-effects/risks of IVIG seem better than those with Rituxan and Cytoxan.
 
I'm in really bad shape, and pretty scared. I would welcome ANY and ALL experience, advice, opions, etc. you may have about *IVIG* specifically.
 
THANK YOU SO VERY MUCH!
 
Best regards,
Zebra
 
---------------------------------------------------------------
Diagnosed with SLE 2010; MCTD 2012
Medications: in flux right now

Northernelf
Regular Member


Date Joined Apr 2012
Total Posts : 38
   Posted 2/17/2015 9:53 AM (GMT -6)   
I am on subcutaneous infusions of Hizentra (plasma)...have been for a year and a half... for cvid (I have low IgG). That all started with a few pneumonias and an experienced doctor picked this up. Anyway, before all that I was looking for help for joint pain (that's been about 4 1/2 years).

I am currently on plaquenil and amytriptoline...my docs are calling it lupus and next month I will see another rheumy...this one with lots of lupus experience.

This winter has been my most painful and exhausting ever...I cut back a little on work but am still trying to live my life. However, it has also been my healthiest winter as far as catching things goes.

Are many lupies using plasma? I had not heard of this... it bolsters the immune system while most things we take try to blunt it. Kinda of like walking a tightrope.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 2/18/2016 11:40 PM (GMT -6)   
Hello Zebra,

I too am looking for any information I can get on IVIG. I have been diagnosed with SLE for 20 years, been through the gamet of medications, currently on a slew, big guns cellcept and leflunomide. Was on Benlysta for 3+ years until I had an aliphatic shock in September 2015. My Rheumy advised this week not only is lupus attacking my neurological system, but also has moved onto my brain and wants me to consider IVIG, which is quite scary to me considering what happened in September.

I'm having a REALLY hard time finding adequate information about IVIG and what to expect. Also, I travel 3 hours each way for my treatments, so this means 3 days a month out of town in a hotel from what I am understanding. The thought of all this is overwhelming.

Anyone who can help with info would be of great help. Thanks in advance.

Sincerely;
Mel67


Mother of 2 beautiful adult children and one amazing daughter in law, lupus SLE since 1997, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus SLE while in college. I take a slew of meds to many to mention, am on Benlysta infusions. I try to live each day with a positive outlook and count my blessings.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 2/19/2016 8:43 AM (GMT -6)   
We have at least 2 members using / or have used IVIG. I will try to contact them today to see if they can come post and answer some questions for y'all.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 2/19/2016 12:38 PM (GMT -6)   
Thank you Lynnwood your help is greatly appreciated.

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 2/19/2016 8:33 PM (GMT -6)   
Hi Zebra and Melissa. I receive one IVIG infusion and one Benlysta infusion each month plus take oral Cellcept and lots of other goodies. Since I have a BS in Medical Technology (lab) I enjoy reading medical info.

So first a quick guide: When a person comes in contact with an antigen (bacterial, viral, environmental, etc) our bodies produce antibodies to fight the invader. Part of this process involves a type of white blood cell called a B lymphocyte. With proper signals the B lymphocyte transforms into plasma cells and make immunoglobulins which are types of gamma globulins (proteins) that circulate in your plasma.

Immunoglobulin G (IgG) is the major antibody of plasma and the most important part of our antibody response. Most Lupus patients have elevated gamma globulins. IVIG is a human blood product that is basically produced using IgG from many, many healthy human donors, but there is no guarantee that it is completely safe.

After some serious hospitalizations for infections, my IgG and all it's subclasses were tested and they all were low. So I was sent to an infectious disease physician who started me on IVIG (Gammaguard) and I haven't had an admission since. Yea! Downsides: 1) I feel wiped out after the infusion. Used to be down for days-weeks, but now tolerate it fairly well. 2) IVIG with the Benlysta cost about $37,000. each month.

Lastly, Northernelf I have never heard of Lupus patients receiving plasma for any reason. In the past, serious lupus cases had their plasma removed hoping to reduce complications. I certainly would not want to regularly receive human plasma, but hey, I'm a lab person.

Please feel free to ask any questions. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 2/19/2016 10:18 PM (GMT -6)   
Butterflake,

Wow! Thank you so much for your kindness in sharing this awesome information! I see I need to update my status, as I am unfortunately no longer taking Benlysta infusions due to what was a gradual slow allergic reaction that lead upto a massive aniphlaxic shock on October 6, 2015. After going severely downhill once Ben got completely out of my system, my Rheumy started me on Arava trying to buy time hoping for a new "MAUB" infusible drug to come out, but that is not working; so looks like we're on too IVIG. I too take a slew of other meds, cellcept, plaquenil, etc. in an attempt to control my disease(s).

Have you always taken the IVIG and Ben together? I can't imagine what it would be like taking both honestly, it took me almost a year to get adjusted and able to function normally to Benlysta. Once I did though it was a God send! My Rheumy did mention that I would be wiped out for a week or so after each IVIG infusion, I figure at this point if I can get 3 good weeks back each month it will be worth it. How long did you feel wiped out for a week or more? I have not been able to find information on dosing and how much they dose each day. I struggle with maintaining a healthy weight, currently I am fighting to stay above 90 lbs. Has the IVIG negatively affected your weight or bone density in any manner? I am so worried about both at this point. Also, has it helped to stabilize your kidney or any other organ damage?

I guess the other thing I am worried about is being infused and then staying in a hotel not my own home because of the germs. I am not an extreme germaphobe; but worry my system is going to be compromised and I'm going to get sick. We do stay at nice hotels, but still germs are germs. My husband has been wanting to purchase an RV, but the thought of dealing with that is exhausting to me. I would rather purchase a second home, so we have some debate there. I need to speak with our account in regards to tax deductions and things of that nature in regards to all of this. The cost alone of all of this is stressing me to no end, which doesn't help.

Do I understand you correctly though that IVIG actually improves a person with lupus' system to where it is not attacking itself by replacing the bad B or T cells with good? I'm sorry, these are all questions I have for my Rheumy, but I was so overwhelmed when I saw him on Tuesday I didn't know what to ask and I don't see him again until March 8th.

Sorry to ask so much at one time, thank you again for your input.

Hugs,
Melissa


Mother of 2 beautiful adult children and one amazing daughter in law, lupus SLE since 1997, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus SLE while in college. I take a slew of meds to many to mention, am on Benlysta infusions. I try to live each day with a positive outlook and count my blessings.

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 2/20/2016 7:54 PM (GMT -6)   
Thanks for asking questions Melissa. I reread my post and wasn't sure it made sense. First I want to say that IVIG (Brand name Gammaguard- google it) is a plasma byproduct. There are lots of plasma byproducts, but they are not the same as receiving plasma.

IgG and the IgG subclasses are one of the most important means of fighting infection in any body. Some theorize that I have low IgG cause my lupus autoantibodies attack the IgG I make and also, eventually, any that is infused. I get such a large dose of IVIG each month, and my body's supply is so low by then that it's a shock to my system making me feel crappy for a couple of days.

For the first few months taking IVIG I was constantly feeling sick, but about 2 or 3 months after starting IVIG, I also started Benlysta. The two infusions every month kept me almost bedridden for 6 months. Benlysta attacks those autoreactive B cells that make the lupus autoantibodies. Benlysta actually leaves your body more exposed to infection, but it is the first FDA drug approved for lupus in 50 years.

Currently I'm sick for 1 to 2 days after receiving IVIG and I have even felt better after my IVIG infusion on occasion. Remember, you are receiving it because you have low IgG which fights infections. So you don't need to worry much about the cleanliness of your surroundings. IVIG does NOT replace B or T cells and from my understanding of immunology it doesn't help Lupus at all. It only replaces the IgG that I don't have. I hope this helps. If you have more questions just ask. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 451
   Posted 2/20/2016 8:44 PM (GMT -6)   
Thank you for the clarification Butterflake, it does help somewhat. As I stated I had received Benlysta for over 3 years until my body turned against it violently in October 2015; I'm very familiar with how that works with the removing the B cells. But had no clue as to how the IgG process works. I've tried to read and re-read the info I have found, but between the lupus attacking/affecting my brain and simply being in a bad lupus fog it is hard sink in I guess. Your simple wording does help. My son, who also suffers from NPSLE has his masters in Immunology and Pathology with specific studies in autoimmune disorders. He wrote his thesis on how lupus affects the brain because he has struggled so greatly with this at such a young age. It was the most active for him during graduate school and actually kept him from going on as he planned for his doctorate to enter further into research field for lupus. Anyhow, he was here today and we did talk briefly about IgG and MAB or MAUBs ( never know which) as he knows a lot more than I do. Honestly, my brain does not retain the information long enough though so I've pretty much forgotten what he said.

I guess my other would be since the IgG does not remove B or T cells has it helped with any organ damage you have or lupus in general other than simply making you feel better overall? It does not sound like IgG is going to control my lupus, it will simply be a small bandaid on a leaky system. If that makes any sense at all to you. My organs, tissue, etc will still be under attack because the B and/or T cells in my immune system are thinking thinking there is an infection? IgG is not filtering out any of the B cells as Benlysta did.

I'm sorry to keep asking and I sincerely appreciate your help. I am going to call my Rheumy's office on Monday and ask his nurse if they can put me in touch with the center who does the infusions, perhaps they can provide me some literature. I'm a very visual, hands on person and the not knowing and understanding drives me mad...lol !

Hugs;

Melissa
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 2/22/2016 12:42 PM (GMT -6)   
Hi Melissa. I too have wicked cognitive dysfunction with some days better than others. I don't remember all this info I give you. I refer to my books. My favorite book is one that many folks on this forum own, "The Lupus Book" by Daniel Wallace, MD. I own two editions. It gets a bit in depth, but it is for the lay person. It's nice that you have your son as a resource who at least understands lupus fog.

As far as I know, the only way IVIG protects my organs is by warding off infections. Prior to IVIG I had numerous pneumonias, was in a coma from pneumonia, and my hubby was called twice because I was dying. I don't have IgG to fight infections. Mine come in a bottle that was collected from human donors and is infused over 3-4 hours each month.

So the bottom line is, that if you make IgG and it isn't being destroyed, there shouldn't be a reason for you to receive IVIG. Saying that, I'm not a physician by any means. If your doc thinks you should receive it I'm sure he has a reason. My rheumy sent me to an infectious disease specialist who orders and monitors my IgG. Let me know how thing go, okay? Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry
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