Tuesday, November 8, 2011

Chapter 3: Good Antibodies to the Rescue...

October 28, 2011  I get a call from Cresent Healthcare Inc.  "We are ready to rock-n-roll with IVIG Mr. CEO... Are you?"  No... that is not what they said... but that is what I heard... and I was ready to rock-n-roll... because I was not really liking this skin blister thing.. Until now, I had soft beautiful skin  :)  ... and I was not about to be bombarded with skin blisters.    I mean have you seen the pictures on the Internet on P.V. Skin Blisters... When I saw them, I cried and cried and cried.  So, I am not about to see myself and cry and cry and cry... I am not even going to post is over here!  There are kids reading this blog!!!

Friday morning, October 30, 2011... at 1pm PST, I mossy my way to the Infusion Center -- which happened to be just 3 minutes from my office -- that was convenient.  Hmm...   Okay.  Nice.

You know... the amazing part of this journey is that as bad as P.V. has been to me.. and I remember Dr. Grando's initial words when we were not sure what I had... and he said "Mr. CEO you don't want to have P.V.."...   So, back to my story.  As bad as P.V.has been to me... everything ... I mean everything and everyone involved around me have been the exact opposite.  Super Good.   Its like the ying and yang of life...   The folks at Cresent Healthcare are amazing!  

My Nurse.. was awesome!  So, we hook me up with an IV line... I take some Ibuprofen 400Mg and I also take Loratadine 10 Mg before the IVIG.    It is all precautionary due the the myriads of side effects that can occur... Btw... I pretty much no longer bother with side effect notices anymore (up to a certain extent) because everything under the sun is now going to be my side effect because of the various meds and treatment... but the miracle is -- ZERO SIDE EFFECTS so far!  Wuuu Huuuu!

IVIG Starts
So, I was given Gammagard 20g IVIG.

GAMMAGARD LIQUID is used to treat patients with primary immunodeficiency diseases (PI). There are many forms of PI. The most common types of PI result in an inability to make a very important type of protein called antibodies, which help the body fight off infections from bacteria or viruses. GAMMAGARD LIQUID is made from human plasma that is donated by healthy people. GAMMAGARD LIQUID contains antibodies collected from these healthy people that replace the missing antibodies in PI patients. In my case... kick some butt against my autoantibodies.

A little overview of those of you interested in the difference between antibodies and autoantibodies....

Antibodies and Autoantibodies

Antibodies are produced in a process of evolution that is still a subject of scientific research. Briefly, antibodies are produced by B cells in two ways: (i) randomly, and (ii) in response to a foreign protein or substance within the body. Initially, one B cell produces one specific kind of antibody. In either case, the B cell is allowed to proliferate or is killed off through a process called clonal deletion. Normally, the immune system is able to recognize and ignore the body's own healthy proteins, cells, and tissues, and to not overreact to non-threatening substances in the environment, such as foods. Sometimes, however, the immune system ceases to recognize one or more of the body's normal constituents as "self," leading to production of pathological autoantibodies. These autoantibodies attack the body's own healthy cells, tissues, and/or organs, causing inflammation and damage. It should be noted that autoantibodies may also play a nonpathological role; for instance they may help the body to destroy cancers and to eliminate waste products. The role of autoantibodies in normal immune function is also a subject of scientific research.

Treatment Starts

We started at slow.. and than zoom to 88 units per something (speed) of the Infusion.  The entire process took less than 4 hours.
The plan is that I take 5 days of this treatment and repeat every month for 6 months.  

Once I was hooked up and being infused by someone's plasma... I had weird visions... I could see other people... and other objects... I saw a HUGE MANSION... a swan lake ....  NO!  Just kidding!!!   I just figured that I am getting plasma from some great soul that donated blood... I should see something.. but nope...  nada.  I did feel pretty good though.

The Cresent Healthcre center itself was a great location with alll the amenities for me to work! :)  So, I called my staff.. and we had meetings and discussions while I was being infused.   And the Nurse was so awesome that they accommodated all our needs...  Thank you to my Nurse Renee!

So... this process continued through Tuesday Nov 1st... and everything went well.. I was doing great!
No problems what so ever...


EXCEPT... for my sleeping... I was only sleeping 3-4 hours a day.   I was okay though ... the Steriods were probably giving me all the energy I needed and keeping me up too... I had not taken Lunesta... I am sure Dr. Grando would not be too pleased about this.   But I just did not want to put more meds into my system if it was not necessary.

Okay....so things are looking good.  I am feeling like my PV is under control... I am getting the right meds and the right treatment and so stay the course to onwards and upwards!

Current Cocktail of Treatment :
80 Mg Methylprednisolone;
500Mg Tetracyclin 3 times daily; ,
500Mg Niacinamide 3 times daily
Lunesta 2 Mg - take as necessary 
IVIG 20g Gammagard (with 400Mg Ibuprophen and Loratadine 1-mg ) 5 days every month
2 daily multi-vitaminss; 

To Great Health Cheers!!! :)


  1. CEO,

    Internet's an amazing thing.....finding this blog and all. Was diagnosed with PV in September. Things seemed to be under moderate control, but my dermatologist tapered my prednisone and now I am experiencing a flare-up and getting quite discouraged. Ironically, I was recently given Dr. Grando's name as a referral and was thinking of setting up an appointment, if I can swing it insurance-wise. I live in Orange County and it seems fortunate to have an expert so close.

    I will follow this blog closely. good luck to you...I know EXACTLY how you feel.

  2. Hey Honeyman,
    Just to let you know Dr Grando is awesome! I have been seeing him for PV for about three years! Its an hour away for me. Dont get discouraged its easy to get discouraged some times especially when experiencing pain. Try meditation or prayer. It really works! I have been blessed with a great family and the opportunity to have Cresant as my infusion clinic. I have had pemphigus for 8 years and I am believing for a cure. I look forward to meeting you MR CEO...Try and get some sleep ;)

    1. Hello CEO,
      My wife just got diagnosed with PV. Right now the flares are limited to Gums only. She is on dapsone but doesnt seem to work at all. We are worried about Prednisone side effects, being vegeterian and her history of past medications, not tolerable. Our dermatologist also suggest IVIG. We are curious to know how are you feeling these days. Please share. rjpj at gmail. We live in Bay Area, CA and are consulting Stanford.

    2. My ID is rjpj2012 at gmail

    3. I would love to hear about any updates.

      I have an uncle who was diagnosed with PV. Problem is, it took over a year, and the doctor hasn't been helpful at all. In fact after the PV diagnosis, it took 3 weeks+a visit to another doctor in a different state, in order for our current doctor to even prescribe treatment... This doesn't sound normal does it? We have been considering getting help elsewhere, is this recommended?

    4. Hi All,
      Came across this website while researching about PV over the net. Just yesterday I came to know that my father who's in India has been diagnosed with PV. Firstly, my sincere thanks to CEO for coming up with such a forum. Would be great to know how you're doing now. Could not see any new posts. Waiting to hear from you.
      While it took me some time to come out of the denial mode but it has certainly made me more cautious to know more about PV and pass the relevant information to my father.
      RJ mentioned about Stanford in Bay Area. It would be of immense help to know how the treatment is going on so far. as I would probably be bringing my father here in Bay Area. Your response would be of great help.

      Thank You. And I wish everyone diagnosed with PV a quick recovery. May God have his blessings upon you in abundance.

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  4. I perfectly understand your predicament. My daughter has super sensitive immune system. Yearly, every spring cleaning time, I either have to send her away or send my carpets to a carpet cleaning in perth wa to avoid dust mites that may trigger her allergic reactions to it. I just hope that soon these allergies will disappear and I don't have to remember to send her away or the carpets for spring cleaning.

  5. I agree. This is a nice spot. I have been diagnosed for 5 years and have never been able to make contact with anyone else with PV. It is nice just to read through and know that there are others going through the same things from misdiagnosis to offending people in public because of the blistering. Sleepless nights to medication side effects. I have been feeling very alone and reading through here has greatly helped combat those feelings. Thanks

  6. I was just tested and am now awaiting the biopsy to confirm what the doctor is almost certain it is. I have never heard of this disease and although it is a disease nonetheless, I am glad to finally have a diagnosis. It is extremely scary though. I would have never in a million years, thought that I would be facing what seems to be such an horrific and debilitating illness. I definitely appreciate a forum where people can share their experiences. I pray for peace and healing for anyone who is dealing with this issue as well as any others.

  7. I am waiting also just for the Biopsy to be done 3weeks!

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