Monday, October 10, 2011

The Beginning...The 7 Month Journey to a Real Diagnosis

The Itch...  It was approximately seven months before Pemphigus Vulgaris became part of my every sentence, everyday.   This is when I first felt it... an itch.    It was during an overseas business trip and I was under the impression that the hotel room sheets were bad... or something.  Haha...   Little did I know then that my autoimmune system was quite excitedly creating antibodies that were attacking specific proteins in the skin and breaking the bond between skin cells -- thus the creation of a blister... or as I thought.... "Hmmm... I have a rash".

Do I have an Allergic Reaction? -- The First Non-Professional Diagnosis...  By March of 2011, I realized that I was getting "rashes".   This is how they worked.  I would first feel a tingle under the skin.  So, I could tell that I was about to experience the rash.  Next within hours I would see a rash.  Sometimes it was a straight line and other times it was a big round rash.   My thinking was that I was probably having an Allergic reaction to something... and let it go at that. At this point, rashes would appear every 4 to 5 days.

My Gums Bleed...  In April... the rashes were coming and going... and I was not paying any attention to them especially since It did not bother me too much.   By now, they would appear every 3 to 4 days.  Again, I did not really think too much about it.   But, when I visited my dental hygienist for a regular cleanup, I had several of my gums bleed.  Again... Did not think too much about it.  Rashes would again go away within 1-2 hours.

A Dark "Spot" on my Tongue... In May, 2011, I felt something on my tongue... like a rash or like a "bump" and when I investigated... it was like a dark spot on my tongue...  it was a little scarry but after it went away in a few hours, I never thought about it again.

"Rashes" More Frequent ...  By early June, 2011, my rashes were coming on a daily basis.... I was quite sure that I was having an on-going allergic reaction.  However... that did not explain my gums now getting worse and worse. 

A Visit to My Periodontist...  When my gums were bleeding really bad, I decided to visit my Periodontist... and initial assessment was that perhaps I was having stress related shingles as I mentioned to my Dr about the rashes as well.  After examining me, he said... my gums were kinda peculiar in that it appeared that my autoimmune system was attacking them... because they were somewhat flabby... not typical of standard gum disease.   He gave me some antifulgal medication and after that did not work, he highly recommended that we did a biopsy.   Yes!  He felt that it was some kind of Autoimmune problem....  Yes! he called it!

By late June, I was now experiencing lesions or redness in my throat and the inner walls of my mouth.  And they hurt when I ate...  When the redness was too much to bare, I decided to visit the Urgent Care and after a bunch of different test... I was told that I proabably had a bad case of sore throat!  Haha!  Nice diagnosis Urgent Care Dr!   Perhaps you should have spent more than 5 minutes with me.

Primary Care Physician Doing Their Thing...  By July 1, 2011, the lesions in my mouth were coming more and more regularly but not regular enough for me to show my Primary Care Dr when I visited him.  So, once again, we did blood work and a bunch of other Allergen tests.... Wullah!  They found it!  I am simply allergic to California Grass, Dust Mite, Cats, Dogs and a bunch of other environmental allergens....   What?  I have been an avid gardner all my life... and I never had lesions in my mouth!!!   Oh well... no worries... the Dr prescribed me the over the counter Allegra -- once a day... and I should be just dandy!


Hello!  I can't Eat!!!   By August 5, 2011, which also happens to be my Birthday, I was having a hard time eating anything solid... It was painful.... Of course the Allegra was not doing the job!   My rashes would come and go every day now... but again I was easily able to handle them... It was the lesions in my mouth that I was having a hard time with!   So... Once again... I insisted to see another Physician and this time... he referred me over to an ENT Specialist just to check out my mouth.

My ENT - My BIG Break!  On September 2, 2011.... I was seen by an Ear Throat Nose Specialist....  and one look and this Physician immediately knew that we had to take a biopsy....  He agreed with the initial assessment of my Periodontist... that it appeared to be something along the lines of an Autoimmune Disease...

In two week, we got the results of the biopsy on September 14, 2011:
THE HISTOLOGIC FINDINGS ARE STRONGLY SUGGESTIVE OF PEMPHIGUS
VULGARIS. A SEPARATE BIOPSY SUBMITTED IN SPECIAL MEDIUM FOR
IMMUNOFLOURESCENCE STUDIES MAY BE CONSIDERED FOR CONFIRMATION. CLINICAL CORRELATION IS ADVISED.


In my follow-up to my ENT, he looked at the results and just from his face, I knew that this was not good.  He immediately put me on 20Mg of Prednisone (steriods) and set me up to see a specialist in Pemphigus Vulgaris at UCI in California in record time!  This ENT Rocks! Thank you God!   In the meantime, my ENT did a second biopsy for IMMUNOFLOURESCENCE for confirmation but it came back NEGATIVE!  What???  This was great!!! I don't have PV... :)    Well.. lets not be too sure... The best thing that my ENT ever did was to get me the GURU in PV in the region if not the Country!   Yes... I can't thank my ENT... DR. BRIAN PAUL BOYNTON enough.   He showed compession, care and a determination to get me to the right specialist that can take care of me immediately!  Thank you ... Thank you... Thank you... Dr. Boynton!


Dare to Eat!
By September 1, 2011, I was on liquid diet... well... on most part but on some exceptions I dared to eat!  Haha... pretty stupid of me.

On a couple of occasions I had some dorritos, french fries, chips and salsa and anything that was spicy and great tasting!  At one point I said... screw the mouth I am going to eat Popcorn!!!   That was really DUMB!  I had to spend more than 1 hour trying to get all the pop-corn remains out of areas in my mouth that I did not even know existed... my mouth was so sore and the walls were so broken up that food had got stuck inside the lesions...


Finally... A Confirmed Diagnosis
On September 20, 2011, I was already on complete liquid for 20+ days and had lost more than 8 pounds.  The pain was too much.  My visit to my a research Dermatologist from University of California, Irvine, was initially not convincing enough to the specialist that I had PV.   But... a simple blood work will do the trick to find out.   Here is what was ordered:

Enzyme-Linked Immunosorbent Assay Indirect Immunofluorescence (Lab Test Code: XPGUS)   and
Enzyme-Linked Immunosorbent Assay (Lab Test Code: XPGOID)

I had been taken off my Prednisone on September 30... to purposely flare up the skin rash so that another Dermatologist -- another wonderful Dr referred to by Dr. Boynton could do a skin biopsy to figure out what was wrong if it was not Pemphigus Vulgaris -- Remember the second mouth biopsy came out negative and my PV Specialist was not convinced I had PV and so I was not about to sit around while the labs were doing their thing.  So, I proceeded to try to figure out if something else was wrong with me.

Going off the Prednisone was NOT good.  Although I had been taking only 20Mg for 2 weeks, in 3 days, my lesions in my mouth got so worse that I could not even swallow any water.   I felt like I had food stuck in my throat or esophagus.  But I knew it was the lession and it was HUGE.   Everytime I swallowed it was terribly painful.   I was rushed to the Emergency Room and admitted.   The ER doctors thru an IV gave me more 200+ Mg of Prednisone over a 12 hour period.  After 12 hours, I began to feel that my lession in my throat was going away and in 1+ day it was gone.   My visit to UCI Medical Center in Orange, California was the best -- Everyone from the ER Docs, the Nurses, Aides and the Inpatient care was just fantastic!  I can't thank them enough!!!

They let me out on October 4... and I went straight to my PV Specialist... who shared the following results:

The Results on October 4, 2011:
by the University of Utah Department of Dermatology

Cell Surface Pemphigus antibodies
IgG: Positive, titer 1: 320 (H) Monkey esophagus substrate
         Positive, titer 1:80 (H) intact human skin substrate

ELISA Testing
IgG desmoglein 1 antibodies: 10 units
IgG desmoglein 3 antibodies: 57 units (yikes!)

Final Diagnosis:  ICD-9-CM Diagnosis Code 694.4  Pemphigus Vulgaris   :(

This is how my journey to PV diagnosis started and ended...  Well... now the journey begins again... with finding a cure.  Yes, a Cure!   What I went through these last 8 months was not exactly fun; not knowing what was wrong with me... and the final diagnosis was no comfort either.  But atleast I know what I have and I have the best people in the world and the best support system made up of great super family, great friends, an amazing staff that works for my high-tech business and most of all -- the best Doctors and Researchers I could have ever asked for!  

I have created this blog... to share all my experiences as I fight this autoimmune disease so that you may find some useful information in my story... my treatment...  my journey... as I refuse to be taken down by PV!

55 comments:

  1. It sounds like you're heading in the right direction. Have you ever heard of homeopathy? Just reading about cured cases brings healing, to me anyway. The Internet can be your best friend, to join lists and get real feedback from real people who are experiencing some of the same things you are.

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  2. Yes... I have and I can appreciate where you are coming from. However, with PV, one has to be extremely careful as it could be counter productive.

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  3. You are heading on the right track, after all they have a diagnosis which is now confirmed. I honestly don't know what to say! I'd like to help and be there in any way I can, but I am across the other side of the world! Anyway, I am glad you are fighting this and hopefully there will be a positive outcome at the end of the day. There is still plenty to look forward to (mee goreng and ice kacang springs to mind right now!). However, please do not hesistate to let me know if I can be of help in anyway possible. Be courageous and don't lose belief! :)

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  4. Mee goreng? Well, if it helps..call me anytime for that n ice kacang! Take care n let us know if we can be of any help anytime..

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  5. Yes... there is plenty too look forward too. Right now I will be happy with just any solids. I have been on liquids for more than 40 days.

    Thanks for the support guys.

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  6. My dog has pemphigus foliaceus,and being only the caretaker for 8 months,I know how hard this is.
    By the way we just gave up prezolon (obviously prednisone)because it didn't work -the blisters were appearing even with the megadoses- and now he is upon ciclosporin-A.
    He looks much better :)
    I think about you,and I wish you the best.
    Alexandra

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  7. Hello Alexandra,

    That is very interesting... and I feel for your dog... I can speak for him as far as how much it hurts...

    I am so glad that he is doing better. Thank you for your wishes.

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  8. Hope you are getting better day by day. Did not even know this kind of crap existed. Your website was very informative. I know you are tough and will beat this thing down. Our prayers are always with you. Let us know if there is anything we can do.

    The Northern Cali Doshi Clan (Anirudh)

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  9. Thanks Northern Cali Doshi Clan... Only 5 in every Million people get it. Pretty rare stuff.
    Don't have too much choice... There is no known cause and no known cure. I have it for life...So, no other way but to be tough and beat it! :)

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  10. hi, you might not remember me as we had met once....way back during ila ben's wedding in mumbai. the only impression i have of you is being usha maasi's son n whatever i have heard from my dad - surendra sanghani n my mom about you when they had visited you'll in the US a few yrs back. your article/ blog was forwarded by dad to me n it was really informative. at the same time i can totally understand what a shock such an incident can be in the life of an active person. but u come across as a very strong willed person n i am sure you will overcome this sickness. though we can't be of much use being so far from you, i wish you all the luck, i know science plays a major part but all the same i pray you have a quick n painless recovery....tc.

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  11. Hello RN,
    Actually I do remember you from my many talks with your dad.. PV was difinitely not something that i expected considering that i am only 45 going on 25 :-) and the multitude of other tests and blood work that always came back looking great. Your post, your thoughts, and your prayers negate any distance between us. Thank you for all your kind words... they do mean a lot to me.

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  12. OK Sundip.. Enough is enough. Don't make me come by and do something that I may regret. You just miss us. Give our love to Bridgette, Mummy, and the kids. Love you and I know you as a persistent person. You will prevail.

    Your absentee family: Charlie, Carolyn, Michael and Brian

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  13. Dear Luna Family,
    Did you really think that I was going to let you folks leave that easy :-) Thank you for all your love and support over two decades of friendship. We miss you lots!

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  14. Hello Sundip, thanks for sharing your journey with us. We all are with you and you know that. Do not look at your watch when you need any help. Just call us...
    Sundip, as we told Ushaben that you are lucky that you are in U.S. We are sure many, many people in this world would never have heard about PV. We did talk to a Punjabi couple who are our good friends about this. They asked us to inform you about RAMDEVBABA and his herbal medicines. There is Ramdevbaba's website. We will look into it and let you know.
    You are facing this PV with all your strong will & determination.Our prayers are with you.
    Rajnibhai, bhabhi and whole Sheth famly.

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  15. Sundip, our thoughts and prayers are with you and your family.

    Steve and Mary

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  16. Nitin & Bina Hemani - Kampala- UgandaOctober 25, 2011 at 7:06 AM

    Hi Sundeep,
    I had never heard about such a thing before..
    But i am proud of your spirit to fight it!!!
    as we are thousands of miles away we shall pray that almighty give you the strength to fight it and overcome it and we are sure you will.
    However i will try to talk to some of my Dr. friends and pass any information .... see if it adds any value....
    take care and trust GOD
    Nitin & Bina Hemani
    Kampala- Uganda

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  17. Cumins Family... Thank you... I know that Jerry is looking out for me.

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  18. Yes.. most people have not heard of it... at the end of the day, only 5 out of a million get it. :-) Thanks for all your support.

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  19. How are you doing?
    I wanted to let you know the news about Zafi because I think they are interesting.
    Neoral,the immunosupressive drug(ciclosporin-A)seems to work miracles.
    His skin looks in a much better condition,the blisters are nearly gone,ALP and ALT decreased significantly.
    The dog-which was in a terrible condition-seems almost his old good self:)
    Beware of prednisone side effects,it is an extremely dangerous drug.
    Ialso wanted to let you know I am thinking about you.
    I wish you the best.
    Alexandra

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    1. Hello i was reading about your pv i too have been diagnosed with pv and had a long road before i found an ent that cared. About neoral i was on it for several months and it caused severe gum problems and more blisters i decided to stop on my own and my mouth cleared up in a no time my dr was not too happy that i did this without his permision but i have not been on any meds for almost a year and have had only a few mild flair ups not sure if im doing the right thing trying to go without medication but im not letting it run my life. Good luck hope with your Pv hope it goes in remission. Sheila from NC

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  20. Sorry to hear about this. My prayers and thoughts are with you. Sending positive vibrations your way.
    I know you will beat this disease.

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  21. hoping that u r progressing well. - masa

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  22. Hi Sundip. I agree with you about Dr. Boynton. He's a wonderful physician. I saw him recently about a problem I've had for several years- nothing as difficult to live with as what you are facing- and he diagnosed it straight away. Sorry you're having such a tough time. Keep your chin up. We miss you at the Forum. C. S. LeVesque

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  23. DHIRAJLAL & SARYU HEMANI AND KIRIT AND ILA SANGHAVINovember 16, 2011 at 8:12 AM

    Hope you getting better everyday.
    We are all very proud to see the way you are handling yourself. You are one determined person and we know you will reach your goal. Our prayers are with you.

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  24. Hi Dip,
    There are no words to explain what I feel..... after getting in touch with you all these years! You are one strong person..as always have been! May god and faith get you through these trying times..fight it out!!!! Best wishes and loads of luv and hugs to you and family.

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  25. I was diagnosed with PV in mid-Sept. 2011. Before my illness, I rarely got sick so in December 2010, when I started noticing a scratchiness in my throat and experienced some difficulty in swallowing, I didn't think too much of it as it was heading towards winter and the flu season. Only I am in Southern California so winter is not something to get alarmed over.
    The itchy rashes and mouth sores didn't start appearing until early March. The scratchy throat persisted on and off but by mid-March, it was ever-present. I had just started a new job and didn't want to take off during the week so I went to Urgent Care on a Saturday. They diagnosed the mouth sores as oral thrush and the itchies as some form of dermatitis. I was prescribed Nystatin for the oral thrush and Silver Sulfadiazine for the itchies. I was in a lot of pain from my mouth and the lesions all over my body. I was barely able to speak and basically reduced to communicating by writing or sounding like Marlee Matlin. I was not able to conform to a normal dress code because any creases, seams, wrinkles in the clothing caused me to be in pain. Let's put it this way, I had the sores in places I didn't even think I had skin! However, as this continued, I was appearing scary to those who didn't know, myself included, and my employers feared that I might be contagious. Eventually, they unceremoniously released me telling me I did good work but my assignment was finished. I was devastated.
    Shortly after being terminated, my condition worsened and I ended up in the hospital. By then, I stopped eating solid foods and dropped almost 50 pounds. The hospital diagnosed it as a severe staph infection along with oral thrush. The attending physician told me to follow up with my regular doctor in ten days, generally to get med refills.
    By the time 10 days had elapsed, I was at the point of giving up. I was not showing any recovery signs and my psyche was all but destroyed. The doctor's son, a med student was helping at the office, and doing a general intake about my visit. I was so dejected I just started crying. He stayed as I was examined by the doctor, given my prescriptions and told to follow up again in two weeks.
    Two days later, I received a phone call from my doctor who said that his son was very disturbed about the prognosis so did some research on his own. He said the symptoms seemed synonymous with a rare autoimmune disorder and they wanted to add another prescription for me to take: prednisone. He also wanted me to see a dermatologist to confirm the diagnosis of pemphigus vulgaris. What a God-awful name for a disease! Naturally, I had to look up everything I possibly could about it. One thing I found amusing is that several sites state that while there is no confirmed causation, they note that it is common with people who are Middle Eastern or Jewish; I am neither. My first thought was that Jewish is a religion so wouldn't the obvious cure be to change religions?
    The dermatologist, through a biopsy, was able to confirm what a med student doing his due diligence had found. Currently, I am trying to recover although I have had some relapses. They are not as bad as before and there is comfort knowing that they should be able to get me back on track by temporarily increasing the dosage and decreasing it again as I stabilize. A few more meds had also been added when the diagnosis was confirmed. There are a ton of side effects but I am learning to deal with those as well and try to tell myself that they are only temporary and a helluva lot better than the effects of the condition itself.
    I am looking forward to this year heading me towards recovery/remission and I hope the same goes for you as well. I just wanted to share my experience with you since we won't come across too many people that have this disorder.

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  26. Hello, My wife just got diagnosed with PV. Almost exactly the same story as yours, took us 2+ years to reach this diagnosis. Same journey through Allergy, Dentist, periodentist, various blood works and finally a dermatologist. We are in Northern caifornia and looking for a good PV specialist. Yes, we are among those rare 5 in a million folks. ANy help appreciated. rjpj at gmail.

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    1. sorry, my email is rjpj2012 at gmail

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    2. My son was diagnosed two weeks after he graduated High School. He had the best doctors I could find. His high school girlfriend broke up with him because she did not want to be with someone who was sick. He was put on Large daily doses of prednisone and Mycophenolate. The prednisone has taken a toll on him. He developed cushings, osteoporosis and cataracts from the prednisone. He started IVIG treatments 6 months ago and now is down to 5 mg of prednisone a day. This will help reduce the side effects. The Cushings will go away and the osteoporosis is being countered with aldrogenate and the cataracts will be removed. A plus to this ordeal when his cataracts are removed his vision can also be corrected and he will not have to wear glasses anymore. He has a new girlfriend which is better looking, more intelligent and a lot nicer.

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  27. My husband has been dealing with PV for almost a year. He was on prednisone, then went off, then they tried Enbrel, which was not actually approved for PV, but they thought it might work. It cost $2000 per month, but after 2 months of no improvement, he is back to prednisone, but that's a temporary solution. There was another drug, can't remember the name, that made him vomit violently for 8 hours. It's a horrible disease, and we're very afraid of the side effects and damage from all these drugs. I think we'll try gluten free diet, I guess it can't hurt.

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  28. Hiya after reading your journey it’s good to know you’re so positive keep the faith and keep strong you can fight this :)similar story with me I don’t know how old everyone is on here but I have read this condition happens a lot in the elderly and more from the Jewish and brazilin background and I don’t fall into neither category :/ since 2009 I have been trying to figure out what was wrong with me went to the GP health centres everything no one seemed to know, I thought I may have some sort of skin cancer, I was 17 at the time.. in 2010 December when my condition got out of control and I was blistering everywhere and couldn’t physically do anything I was rushed into hospital were i was in casualty and from there all the doctors and nurses did a biopsy and after months i was informed I have PV.. I’m 20 years old now and still fighting with this, last month April 2012 things got worse as I tried homeopathy i think it reacted with the prednisolone and the other medication, this condition is a time consuming fight life consuming struggle. But keep calm and work for the better days (y)
    Even though the doctors say it is not curable but controllable I don’t believe in them if god can give illness he surely can take it away, for all of you that are going through this don’t give up keep faith strong and wait for the better days your life may not be going the way you want it to but it’s going the way god wants it to, so keep patient because in the end its going to be ok and if it’s not ok it’s not the end. Even though I’m finding it hard myself worst year ever one day it will all be ok as everything happens for a reason. “verily with hardship comes ease”
    Hope everyone gets well soon and things look up keep smiling 

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    1. I also have Pemphigus. It took me almost a year and 9 doctors. I was given the news New Year's Eve 2008. I am now working hard to try to bring awareness to this disease. I started a business just so I could donate money to the research and development for a cure. I have gone in and out of remission. I was told on June 26 that I am once again in remission. I was told on June 27 that I had breast cancer. Not an easy way to treat a person who has pemphigus.

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    2. Your story is truly inspiring to me. You are young but very very strong. Hang in there. I know it's tough but you sound like a true brave person. I will pray for a speedy recovery for you.God bless.

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  29. I developed PV 22 years ago. I’ve been in complete remission for the last 4 years. I’ve noticed that sun exposed and sun burned skin will trigger it but not right away usually 6 months or so later. A good tip to know about is adding baking soda to your bath to change the PH will prevent the water from stinging when you are soaking off your bandages. I tried various treatments (IVIG, Imuran, Cyclosporine, Enbrel, Cytoxan pills, gold injections), and I found Cellcept 2000mg, plasmapheresis (when it was really bad), and Prednisone most effective. I’m off all meds now but I hurt my spine from osteoporosis caused by the corticosteroids.

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  30. I just wanted to amend my post above of September 25, 2012. I was not on oral Cytoxin long enough to really give it a chance to work. This is a strong med and it might have been of benefit. The other meds I listed I gave a fair trial and did not get good results.

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  31. What an incredible journey you've followed! Thanks for sharing this. Wondering how you are doing now? Looks like still on treatments? I went through a very similar path in July 2007 and it took 6 months for the doctors to diagnose pemphigus vulgaris. Still remember the Dermatologist looking at my body and saying looks like pemphigus....let's pray it's not pemphigus vulgaris. I've gone through years of treatments and am happy to say I'm officially in remission. My saviour was a Specialist Dermatologist at Sunnybrook Hospital in Toronto (Dr. Scott Walsh). He specializes in PV of all things. He was amazing. Ask about Rituxan infusions. It was Rituxan and IVIG that got it under control, got me off the prednisone, and wiped out the disease. I've been clear of any blistering for almost 3 years. Great Blog! Check out mine at pvsurvivor.blogspot.ca All the best! Clark

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    1. Hi Clark, I hope very much that this message can reach you. I was recently diagnosed with PV. Dr. Walsh at Sunnybrook Hospital is also my specialist...I am taking Prednisone 50mg/daily right now, along with other medications (mainly to offset the side effects of Prednisone)...I wonder would you mind sharing your treatment, and how are you doing now? I sincerely hope you are in complete remission...All the best...Gillian.

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  32. Just got diagnosed. Really in a dark place with oral, vaginal and anal lesions. Anyone have any good ideas to help those sensitive places feel more normal while the high dose prednisone is trying to calm everything down? Any other tips/books/ideas would be greatly appreciated. You all seem like you have your own very specific journeys to recovery.

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    1. Just bumped into a relative this Christmas who suffered with the condition ( ICU and all) a few years back, but is looking and feeling tremeandous now- skin looks like a baby's, although is in his 60's- diet has played the biggest role in the recovery. Raw foods as much as possible- fruit smoothies, yoghurt,raw veg salads daily...and fish x3/ week, occassionally chicken- red meat only v. v.rarely on special occassions. Maybe this can help you? RSA

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  33. Hello sir, You are well it is my wish!

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  34. Hi there, I know it may not be the easiest disorder to deal with. My father had it also. He didn't seek treatment quickly as he shoulve. Also, there were so many Looney docs that misdiagnosed him. Sowhile he was alive, too much previous time were wasted that, by the time he was diagnosed with PV, it was very severe. He llater died of unrelated illness to PV. I wish people can be moreinformed of this disease. Especially Doctors who claims they know what they are doing. I know had my father recognized this disease earlier, he may be able to avoid the agony of the pain and suffer he had to endure before he passed away.
    You are def on the right path. There may very well be a cure for this disease soon as our technology advances. I wish you the best, speedy recovery. Thank you for sharing your experience with this disease. Thank you.

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  35. Hello there. My mother has been dealing with this illness for over 3 years now and has endured almost every treatment mentioned here but still is suffering. She now has a stent in her esophagus so that she can swallow food but isn't tolerating it very well so she is contemplating having it taken out. Her gastroenterologist is very concerned about her esophagus becoming very thin as it tears each time she has to have it stretched to keep from choking. She sees a dermatologist in Lexington, Ky but we would welcome any suggestions as to where else we could go to seek treatment. She has become very depressed and feels hopeless. I pray for everyone out there that has been affected by this disease. God bless.

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    1. Hello, Anon.

      Have you tried a doctor referral from the IPPF site? They are very helpful.

      I am in Southern California, and like the blog author (who hasn't posted in years!)my doctor is Dr. Grando at UCI. He is fantastic and I credit him with virtually saving my life. I know he would be available for a consult at the very elast, if traveling to the west coast is an option.

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    2. Hello SoCal Anon,

      Thanks so much for your reply. I'm not ruling out traveling to the west coast if necessary. I sent IPPF an email and its been over a week with no response. I plan on calling the phone number they have provided on their site to inquire about a referral. Sounds like your doc is a godsend. We could use a miracle. Best wishes for continued good health.

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    3. Lex Anon,

      I am sorry that the people at http://www.pemphigus.org/ are not assisting you. I know they are kinda short-staffed, but usually respond before a week with doctor referrals.

      I might advise a University dermatology department as they seem to be at the forefront of these things.

      I personally believe my IVIG treatments have been the most important reason why I have not had any flare-ups. However, they are very expensive and your doctor would have to know about them and how to get you set up for them. My first derm was knowledable enough to diagnose me, but didn't really know how to treat me. Dr. Grando is a lifesaver in my eyes.

      Good luck, and I would give the IPPF people another shot.

      Delete
    4. Hello Anonymous,

      I am so sorry to hear about your mother and her suffering. I to have PV and was diagnosed during pregnancy. It was awful and I could not receive any treatment until after I gave birth. My doctor is Dr. Jacob Levitt from Mt. Sinai in NYC and one of the best in the country and specializes in this disorder. We also visited Dr. Ahmed in Boston at the Blistering Disease Center to get a second opinion before moving forward with any treatments. Dr. Ahmed has given his life to the study and treatment of PV. He spent 4 hours with me and was amazing. I ended up doing rituxan treatments with Dr. Levitt and have been almost blister free for about 9 months. Wishing your mother a quick remission from this awful disorder!

      Delete
  36. Hi there,
    I'm 19 years old and from New Zealand. I was diagnosed with PV when I was just over a year old, but over a number of years my dosage of prednisone was lowered very slowly, by the tiniest percentage and I haven't taken any steroids since I was 7. Before that, I don't think I had any active lesions since I was a toddler, thanks to the steroids.
    I am now almost 20, and I have remission for around 13 years, with no signs of the disease for much longer than that!
    I'm praying for you and anyone stil affected by this disease and I really hope you have a speedy recovery.

    ReplyDelete
  37. I was diagnosed with PV 23 years ago after 11 months and 13 doctors. The blisters were in my mouth and throat for most of the 11 months, but moved to my back and chest a few weeks before seeing a dermatologist that recognized it as PV. I was put on prednisone and after a year was on 5 mg EOD. A few years later got down to 2.5 mg EOD with only small outbreaks maybe once or twice a year.

    My doctor kept me on the 2.5 mg EOD but added liquid prednisolone to be used as a swish or gargle (swish but don't swallow) upon onset of a mouth blister. It worked great and stopped the outbreaks immediately.

    I now rarely have blisters or use the prednisolone swish, but I keep it on hand just in case.

    ReplyDelete
  38. How are u doing I was diagnosed by late 2012 n currently on dexa methasone n cyclophosphamide with heavy depression, I am 39 n hope to see some ray of light.

    ReplyDelete
  39. Pemphigus refers to a group of skin disorders that result in rankles on the skin. Natural Herbal Treatment support can take a variety of structures and blends. You may try of these Pemphigus Herbal Treatment that use only natural ingredients and simple instructions. Herbs Solutions By Nature offering Gesteton, an herbal products made out of natural ingredients that are got from genuine herb retailers.

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  40. Pemphigus is an autoimmune disease being characterized by blisters. Pemphigus Herbal Treatment to support your immune system while reduce blisters happening in Pemphigus vulgaris.

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  41. Hi -
    My gums keep peeling off and bleed. Can't eat anything sour. Diagnosis: PV.

    Doctors are all idiots. High dose of Prednisone almost killed me in ER.

    I'm hopeless.

    Afa

    ReplyDelete
  42. I must appreciate you for this superb post

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