pberggren memorial thread

**Ruotsi1** · 09-25-2014, 12:15 PM

I just had my first Rituxan infusion last week and they gave me 120mg solumedrol, Tylenol, and Benadryl prior to my infusion per MD at Cleveland Clinic.

**drz** · 09-25-2014, 12:57 PM

Originally Posted by Ruotsi1

I just had my first Rituxan infusion last week and they gave me 120mg solumedrol, Tylenol, and Benadryl prior to my infusion per MD at Cleveland Clinic.

They are knowledgeable and skilled in this area but the major centers for Wegs some times develop different protocols that work for them so there may be more than one way to do things.

**me2** · 09-25-2014, 01:02 PM

Standard protocol here where I live is to use Solumedrol minutes before the Rituxan. I don't remember there being an issue with what my daily dose of prednisone is at the time. I have been on as much as 60 mg probably when also getting Solumedrol and Rituxan. I don't claim to know a lot about this but I don't know how you would end up reducing your daily prednisone if you don't do SOMETHING like Cytoxan or Rituxan. I don't remember hearing about there being a problem using either of these while also on high dose prednisone.

I had IVIG several years ago. I could not remember how it was supposed to work which I thought was kind of odd.
Of course very sick at the time. So I looked it up and found this: The precise mechanism by which IVIG suppresses harmful inflammation has not been definitively established but is believed to involve the inhibitory Fc receptor.^[4]^[5] However, the actual primary target(s) of IVIG in autoimmune disease are still unclear. IVIG may work via a multi-step model where the injected IVIG first forms a type of immune complex in the patient.^[6] Once these immune complexes are formed, they interact with activating Fc receptors on dendritic cells^[7] which then mediate anti-inflammatory effects helping to reduce the severity of the autoimmune disease or inflammatory state.Additionally, the donor antibody may bind directly with the abnormal host antibody, stimulating its removal. Alternatively, the massive quantity of antibody may stimulate the host's complement system, leading to enhanced removal of all antibodies, including the harmful ones. IVIG also blocks the antibody receptors on immune cells (macrophages), leading to decreased damage by these cells, or regulation of macrophage phagocytosis

--- So I remember now why I don't remember how IVIG works. It is because it is not precisely understood. I remember being less than encouraged by hearing that but then I realized how many things there are that we don't really understand how they work - we just know they do. I remember working out my own concept (which may be wrong, or just not precise) is that IVIG floods the blood supply with antibodies and overwhelms and confuses the unhealthy process that is currently going on (at least in my case).

The only fact I can convey is that my experience of it was that it was not like getting Cytoxan, Rituxan, or large doses of Solumdrol in that those things initially made me feel worse initially. I could not even feel anything with the IVIG- which is a good thing

I found this article about using IVIG in conjunction with high dose steroids and a pregnant woman with Wegener's: Successful treatment of new onset Wegener's gr... [Mod Rheumatol. 2008] - PubMed - NCBI

I also found this article that talks about the fact that it is used in conjunction with other therapies. It also talks a bit about what is confusing us. The fact that it is used for people with immune deficiency and also people with an over active immune system (like WG). They use the term immunomodulator. Which to me means it is something that somehow corrects underactivity or over activity at the same time.:
Clinical applications of intravenous immunoglobulins (IVIg) ? beyond immunodeficiencies and neurology

And from an NIH funded Vasculitis Research web page:

What is the role for intravenous immunoglobulin (IVIG) in treating vasculitis?Intravenous immunoglobulin (IVIG) is not often used to treat vasculitis. IVIG is the purified antibody-containing part of the blood proteins obtained from blood donations. IVIG is most often used in treating vasculitis when a patient with active vasculitis also has an infection. Unlike most other treatments used in treating vasculitis, IVIG does not suppress the immune system, and hence does not make it more difficult to get over infections. IVIG may also be used when other standard treatments for vasculitis have failed or have not been tolerated well by patients. Treating physicians usually decide on a case-by-case basis how many days of IVIG to give. IVIG is usually given in monthly courses repeated courses monthly for 3-6 months.

And probably the best summary ( you could have skipped all my other stuff) from the Oxford Journal of Rheumatology:

The role of high-dose intravenous immunoglobulin in rheumatology

I'm really thinking about You guys , Alysia and Phil. I'm hoping and praying that you get the same miracle that I have.
It sounds like you have great doctors on board and also a great , and well respected, consultant in Dr Specks. I met him at a WG Symposium several years ago in Kansas City and he took some time to talk with me in the hall way about some questions I had. He is very competent and also has a genuine desire to help people.

(Oh, and PS, the only contra-indication I have ever heard of for Rituxan is an active infection. For me, my sinus infection had to be treated with antibiotics before getting Rituxan.)

**annekat** · 09-25-2014, 01:16 PM

Wow, Kirk, you really know how to do your homework. I don't have time to read the links but I read what you wrote, and it sounds like a great thing for Phil, especially if Dr. Specks says so. I hope his docs will quit messing around and get on it. Actually, I don't mean that they are doing the wrong things, I just think, why not follow Dr. Specks' advice ASAP?

**Sangye** · 09-25-2014, 01:46 PM

You absolutely have to have a big dose of pred circulating before you get rtx infused. That's how they prevent an anaphylactic reaction. Benadryl is not enough. Since Phil is already on 80 mg pred daily he's covered. I normally get 100 mg solumedrol (which equals about 150 mg pred). Dr Seo said he'd be willing to go as low as 80 mg solumedrol ordinarily but since rtx is my last option he doesn't want to take a chance. I also get benadryl, but he said that's not nearly as important as the high dose pred/solumedrol.

I asked Dr Seo about IVIG a few years ago. He said they thought it was a promising treatment for Wegs but research didn't support that hypothesis. He said they use it to support the immune system if a Weggie gets too immune compromised by treatment. Given that info, IVIG might help Phil recover from the infections but it won't help if Wegs is a big factor.

**Alysia** · 09-26-2014, 08:43 AM

Thank you so much for the precious info & wisdom & support. Kirk, you are so amazing with your help. God bless you all <3

**Alysia** · 09-26-2014, 09:05 AM

So, the nurse of the plasma exchange arrived but it turned out that the line is blocked. While we were waiting for the med to open it, arrived the results of the Igg blood tests. God's hand. The Igg is very low almost zero. The vasci doc explain that plasma exchange will be wrong now & that Phil is going to get Igiv treatment asap. Prob today.