So...by now, Dr. CEO (me...hehe) was realizing that apparently my levels of medication were simply not doing the job. I should NOT be having any skin blisters... I am being treated. Right???
By October 25 when I saw Dr. Grando, I had several of these little puppies tap dancing on my back. Dr. Grando decided to do the famous Nikolsky's skin test. Nikolsky's sign is either positive or negative. A positive result means that my skin portion of P.V. is active. People with a positive sign have loose skin that slips free from the underlying layers when rubbed. The area beneath is pink and moist and usually very tender. Until this point, my it had been negative.
Well... wullah! It was Positive! So, just in life its important to move forward... So was my P.V. -- yup moving forward and getting more invasive by attacking my skin now.
This was obviously not a good sign. Dr. Grando was not too happy about this. Now, there was one part of my treatment that had not begun. And that was IVIG or otherwise known as Intravenous immunoglobulin/
Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:
- Immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring low antibody levels.
- Autoimmune diseases e.g. Immune thrombocytopenia ITP and Inflammatory diseases e.g. Kawasaki disease.
- Acute infections.
So, Dr. Grando felt that I needed to get on this puppy as quickly as possible and he contacted several of the vendors and the one we finally were able to accept my health care insurance (that is half the battle) was Cresent Healthcare, Inc.
Treatment... there was a change... as my PV anti antibodies increased their activities... we call in the Calvary! :) From 60Mg of Prednisone, we now moved on to 80Mg of Methylprednisolone. Now unlike Prednisone where the liver activates the steroid.. With Methyprednisolone, it is self activated. So, watch out P.V. here were come with reinforcements! :)
Who needs Sleep!
On the whole... I am still feeling good. But these new exciting drugs in my system do not come "freee" as my ENT Dr. Boynton had once reminded me. I was only sleeping 2-3 hours a day which was fine with me... but not for everyone around me as they could not keep up with me. But... hey, i felt super productive... so I was happy. I was not really tired too....
But hold on King Musaby! -- Dr. Grando was not so impressed... and said "Sundip! you need at least 8 hours of sleep!" So, lets give you some good stuff... Remember all those nice ads of Lunesta. Well... that is what I got. Take a couple of those and I should be out for 8 hours. Okay... I thought. I will do it if I really need it.
So, Treatment at this point:
80 Mg of Methylprednisolone, 500Mgx3 Tetracyclin, 500 x 3 Niacinamide and Lunesta 2 Mg - take as necessary.
Moving on with cocktail of drugs... to great health Cheers!!! :)
Inquiry, please contact me.ReplyDelete
Hello I was just diagnosed with this today. But I had been dealing with this for 7 months also. What I found that makes me feel better and has even allowed my skin to heal is a gluten free diet. I started the diet the day before I had my biopsy my skin was full of blisters and inflamed. By day two the itch was gone and inflammation was easing up. Please try this I think it may help.ReplyDelete
Is the gluten free diet still helping you? My husband has PV, but won't try giving up gluten. He has tried several medications, which haven't worked, and he is miserable. I may have to force him!Delete
I have been swishing Colloid Silver in my mouth for20 mins 3x day. Seem to be helping a lot with the painful blisters.ReplyDelete