The following is my current and historical medical treatments:
Physicians:
- Dr. Inel of Kaiser Permanente
- May 2014 to Current
- Did not have any physicians
- July 2012 to April 2014
- Dr. S. Grando of UCI
- Oct 2011-July 2012
- Was no longer able to continue because I lost my Insuranc
Medications
All medications are daily doses:From April, 2014 - SLIGHT ACTIVE - NOT UNDER DR's CARE - ON MY OWN
- 40 Mg Methylprednisolone;
- 2 daily multi-vitamins;
- Diet: Soft Solids & Liquid: Ensure 2 to 3 bottles of 350 calories per day
- OUT OF ALL MEDICATIONS
- 2 daily multi-vitamins;
- Diet: Soft Solids & Liquid: Ensure 2 to 3 bottles of 350 calories per day
- Tapered down to 10 Mg Methylprednisolone
- 2 daily multi-vitamins;
- Diet: Solids & Liquid: Ensure 1 to 2 bottles of 350 calories per day
From Feb, 2013 - CLEAR - NOT UNDER DR's CARE - ON MY OWN
- Tapered down to 0 Mg Methylprednisolone
- 2 daily multi-vitamins;
- Diet: Solids & Liquid: Ensure 1 to 2 bottles of 350 calories per day
- 10 Mg Methylprednisolone;
- 2 daily multi-vitamins;
- Diet: Solids & Liquid: Ensure 1 to 2 bottles of 350 calories per day
- 10 Mg Methylprednisolone;
- 2 x 500 Mg Tablets Mychophenolate - Twice a Daily
- 500 Mg Capsule Tetracyclin - 3 times Daily
- 500 Mg Niacinamide - 3 times Daily
- 2 daily multi-vitamins;
- Diet: Solids & Liquid: Ensure 2 to 3 bottles of 350 calories per day
From August, 2012 - SLIGHT ACTIVE - NOT UNDER DR's CARE - ON MY OWN
- 20 Mg Methylprednisolone;
- 2 x 500 Mg Tablets Mychophenolate - Twice a Daily
- 500 Mg Capsule Tetracyclin - 3 times Daily
- 500 Mg Niacinamide - 3 times Daily
- 2 daily multi-vitamins;
- Diet: Solids & Liquid: Ensure 2 to 3 bottles of 350 calories per day
From July, 2012 - SLIGHT ACTIVE
- 40 Mg Methylprednisolone;
- 2 x 500 Mg Tablets Mychophenolate - Twice a Daily
- 500 Mg Capsule Tetracyclin - 3 times Daily
- 500 Mg Niacinamide - 3 times Daily
- 2 daily multi-vitamins;
- Diet: Solids & Liquid: Ensure 2 to 3 bottles of 350 calories per day
- 120 Mg Methylprednisolone;
- 2 x 500 Mg Tablets Mychophenolate - Twice a Daily
- 500 Mg Capsule Tetracyclin - 3 times Daily
- 500 Mg Niacinamide - 3 times Daily
- IVIG 20g Gammagard (with 400Mg Ibuprofen and Loratadine 1-mg ) 5 days every month
- 2 daily multi-vitamins;
- Diet: Liquid & Soft Solids - Ensure - 2 to 3 bottles of 350 calories per day
- 15 Mg Morphine Sulfate
- 140 Mg Methylprednisolone;
- 2 x 500 Mg Tablets Mychophenolate - Twice a Daily
- 500 Mg Capsule Tetracyclin - 3 times Daily
- 500 Mg Niacinamide - 3 times Daily
- Lunesta 2 Mg - take as necessary
- IVIG 20g Gammagard (with 400Mg Ibuprofen and Loratadine 1-mg ) 5 days every month
- 5 tablets Clotrimazole (Mycelex Troches)
- 2 daily multi-vitamins;
- Diet: Liquid - Ensure - 6 to 7 bottles of 350 calories per day
- 15 Mg Morphine Sulfate
- 140 Mg Methylprednisolone;
- 2 x 500 Mg Tablets Mychophenolate - Twice a Daily
- 500 Mg Capsule Tetracyclin - 3 times Daily
- 500 Mg Niacinamide - 3 times Daily
- Lunesta 2 Mg - take as necessary
- IVIG 20g Gammagard (with 400Mg Ibuprofen and Loratadine 1-mg ) 5 days every month
- 5 tablets Clotrimazole (Mycelex Troches)
- 2 daily multi-vitamins;
- Diet: Liquid - Ensure - 6 to 7 bottles of 350 calories per day
- 120 Mg Methylprednisolone;
- 2 x 500 Mg Tablets Mchophenolate - Twice a Daily
- 500 Mg Capsule Tetracyclin - 3 times Daily
- 500 Mg 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-vitamins;
- Diet: Liquid - Ensure - 6 to 7 bottles of 350 calories per day
- 80 Mg Methylprednisolone;
500Mg Tetracyclinx 3 times daily; ,
500 x 3 times daily Niacinamide
Lunesta 2 Mg - take as necessary
IVIG 20g Gammagard (with 400Mg Ibuprophen and Loratadine 1-mg ) 5 days every month
2 daily multi-vitaminss;
- Prednisone - 60Mg daily
- Tetracycline - 500Mg x 3 times a day
- Niacinamide - 500Mg x 3 times a day
- 2 Centrum Multi-Vitamins daily
- Lidocaine Viscous - To Numb Mouth Sores/Blisters -for Pain as necessary
Thank u for not remaining silent about your ordeal but for sharing your story with others like myself. Because of your courage and boldness to create this blog you have inspired me to keep the faith and not give up hope in fighting P.V. One day I noticed while I was brushing my teeth that my gums were bleeding so, I thought I had Gum Disease. I was diagnosed with P.V. after 2 1/2 months of mystery and pain in 2009, after going to four dentists. The last Dentist recognized that my problem was not Gum Disease or an abscess and he recommended me to an Oral Surgeon for a Biopsy. This Surgeon just happened to relocate to Riverside, California from New York and he was familiar with the disease. I had never heard of it and I was very afraid. I thought I was going to die! But, this Doctor encouraged me and said that I was going to be alright with proper treatment.
ReplyDeleteBefore I could see a dermatologist, I went to Loma Linda Urgent Care and was placed on 60mg of Prednisone to aggressively treat the condition because at this point I could barely eat and swallow. I am now down to 20mg a day. My Dermatologist prescribed vitamin D and Oscal to counteract bone problems from the prednisone.
I have noticed that when I control my stress levels I do not get lesions in my mouth or on my tongue. I think stress is a direct link to flare ups, at least with me it is. This experience has humbled me in many ways and I am not the same person I was back in 2009. Inspite of my diagnosis, I found love in 2010 and got married to a wonderful man. Right now, I am waiting for the manifestation of my healing... I confess and thank God for my healing everyday.
I know I am healed in Jesus Name! God bless you!
I must say it is nice to actually see someone talking about this disease, so thank you! I hope your treatment is working! I too have PV was diagnosed when I was 18 and I'm now 32.
ReplyDeleteI just thought I would share some info I've just been discovering. My dermatologist mentioned to me that he knows of a Chemist who claims that auto immune diseases stem from the gut. He said how he was a changed man after simply cutting out onions from his diet so perhaps theres some truth to it. He gave a young girl this ginger tonic from a chemist and it helped her auto immune disease pretty much cured her. Not saying that this is what we PV sufferers need but i think we need to individually investigate our allergins as it plays an important role in our bodies balance.
I have been investigating a bit on auto immune diseases in general and came accross this ebook by a woman called Julia Liu the norton protocol and have found it so interesting, she cured herself of Lupus but has changed her lifestyle for good to maintain her health. I've taken a few things from her book and am putting it into practice... The more I've been digging around and researching and picking the brains of my naturopaths I discovered these common things among people who have some form of auto immune disease, in women; estrogen dominance, in men testosterone dominance play a considerable part. Dairy avoid, me i'm not gluten or wheat intolerant but I'm minimizing it all to give my system a break. Our cells need repair so find a good quality antioxidant and minerals. I've just been tested for heavy metals and they have found really high levels of mercury in my system (which would not be helping my disease probably making it worse)So I'm currently detoxing this from my system. I'm quite lucky here in Australia to have found a great doctor & naturopath all in one to work with me on this.
A man I met in Sydney a few years ago who had a severe case of PV at the time phoned me earlier this year to tell me about these vitamins/anti oxidants he was taking, they were an Amway brand which kind of put me off a bit, but he was in remission and feeling amazing. These vitamins claim to be pure/organic and re structure the cells. which is what Julia Liu talks about with chinese herbs re training our cells to actually do their job. I've realized I can't just rely on these western drugs every day to just suppress this disease, no basic vitamin is going to help. I've changed my lifestyle my diet, am taking some high doses of supplementation and I'm feeling great, my blisters have toned down but i'm hoping in 12 months time I'll be blister free and off my medication.
Best of luck on your PV journey!
Sorry to hear you're all going through this but glad to know I'm not alone.
DeleteSome of the research I've been doing shows a connection between auto-immunes and
"leaky gut syndrome." Looks very right-on to me.
Many years ago my herbalist got me over Epstein Barr, which they said is "incurable" - clearly not
true. But getting another auto-immune shows me I've got an ongoing problem. And I'm pretty sure it
came from overdoing Sugar - I'm a 'choco-holic' to the core, though never been overweight. Other than
sugar/chocolate (Bad!), my diet's been very healthy over the years. "Leaky gut" makes sense.
Just started using high dose Vit C and probiotics (lactobaccillus acidophilus, coconut water/milk, etc),
My major lesions had almost all gone away through limiting my diet to 'no Thiols no Tanins.' Pretty extreme, but it worked for almost 2 years until I had a major stress event 2 months ago.
Dr. said I was doing better than patients using prednisone. But, I did lose a lot of weight - its extreme,
I admit. Then again, we ALL lose weight with this thing!
(I read about the Dr. who learned that limiting thiols - garlic & onions etc - and tanins - chocolate, coffee, tea, etc - helped her patients greatly. Where she lives they have 3 times the population of patients with PV.)
As I said, my mouth went ballistic 2 months ago due to major stress. HAD to try small amount of
prednisone (10mg) which helped very little - but getting Off it triggered another flare - I was so ticked!
I don't want to be on this merry-go-round w/ prednisone (very Unmerry indeed!) so I started researching causes of Auto-immunes - and that's when I found the research on "leaky gut syndrome" and auto-immunes, and the connection to probiotics and healing the gut.
Will let you know what happens if you like. Wondering if anyone would be interested in a more
frequent interaction - maybe there's a way to Group Skype or something? I know that group
support is a Major Player in the Healing Process.
Thanks for responding if you do. Will post this on another page here as well.
Wishing you all Full Recovery and Excellent Health!
ladyiehawk@aol.com
I cant download the e book anymore,can you please advice?Please help
DeleteThanks
My email is paelab8@yahoo.com.sg
Hi i have just found out that i have pv i have not got any sores in my mouth it started on my scalp and on my back and front approx 5 ago my doc did'nt know what it was nor did the other 3 docs i ask to be refered to a dermatoligist the doc as perscribed lansoprazole 1 a day then prednisolone 30 mg a day and also colecaliferol 2 a day can anyone give me any advice still in shock
ReplyDeleteI also have pv, please contact me if you're still looking for advise. I take a natural herb that has my break outs under control and I only pay $15 for 5 bottles. rleija8@att.net
Deleteanitasahooprt@gmail.com
DeleteHello Miracle. i am from odisha, Indian. My father has been suffering from pv since 2012 jan. He is taking steroids orally. It has its side effects also. More over the blisters are not fully cured. These are coming and going. The doctors only increasing and decreasing the dosage .we stopped the alopathic medicine for 3 months. The erosin on the scalp is very serious. My father is in much pain. Please suggest any medicine u know or any doctor.
DeleteHello Miracle. i am from odisha, Indian. My father has been suffering from pv since 2012 jan. He is taking steroids orally. It has its side effects also. More over the blisters are not fully cured. These are coming and going. The doctors only increasing and decreasing the dosage .we stopped the alopathic medicine for 3 months. The erosin on the scalp is very serious. My father is in much pain. Please suggest any medicine u know or any doctor.
Deletedony worry dude..try rituximab infusion it helped me& iam without steriods for 4yrs now, consult ur doc who knws this might help u.. take care n best of luck....u can contact me on mehtab76@gmail.com..
ReplyDeleteIs it available in lndia
DeleteHi yes i know how you feel back in may 2012 i had a couple of sores on my scalp but just put it down to had a different hair colour put on. then i got a couple of sores on my back two days later just touched my shoulder and my skin came off and left with a smarting pain and my skin was red raw so i went to my gp he gave me some cream didnt do any good after seeing all 4 gps in practice still didnt know what it was by this time i had over 30 on my back aprrox 10 on front and 12 on scalp i said i want to be refered to a dermatoligist as soon as she saw it she said i have a good idea what this is but we will do a biopsy and blood test came back saying pv now on steroids etc now within 5 weeks i am on 20 mg steroids and have 5 sores on back 2 on front and 2 on scalp thank goodness all is going well but i am still trying to get my head round it dont know how long its going to take me but as long as things keep getting better thats all i can hope for hope everyone that has got this terrible condition can get in remission.
ReplyDeleteI hate this disease so much. Its hard enough going through high school, but this made it so much harder... good bye sports. I've had it for 7 months and thank god it has gotten much better. I still get blisters once in a while which annoys me, but I'm grateful It has gotten much better. I am currently taking 7 mg of methylprednisolone and It is being reduced extremely slowly. I hope they find a cure in my life time. At the least I'm happy that I can control it. I think about how I don't have it as bad as others which makes me feel better about myself. Good luck To all.
ReplyDeleteI'm now 51 years old and have been fighting this PV since February 2012. Still fighting with Prednizone and Imuran.. I started with a single sore on my scalp and a very sore throat! It then progressed to four open sores on my scalp and a mouth full of lessions that were peeling and very sore!! I'm About to try something else and trying to figure out what next, because it just lingers and comes in waves, especially in the mouth and throat. I've been on as much as 60mg Pred and 200 mg Imuran per day for months at a time, then try to cut back on the Pred down to none, but consistant flare ups force me back onto the Pred along with the 200mg Imuran still taking. I want to find a no kidding CURE with the least side effects possible!! Mine has been somewhat controlled but not gone and keeps coming back. I wish you all the best too!! Thank you for this blog!!!
ReplyDeleteI too am going through the same, diagnosed 8/28/13. I have no support system, am on FMLA from a very high-stress job that probably does not want me to return with this chronic condition, and about to lose everything. I have no help at home, and no support system, having recently transferred to a new location. By myself with this stuff. Luckily I do have some old friends. My old friends are mostly medical people who have seen my progression from happy-go-lucky, fun person to major stressball over the last several years, given events in my life, family, and economy. My old friends believe that this is actually the major problem in both precipitating my pemphigus and continuing it. Maybe the same for you??? You don't say much about your life. Do you have any happiness in it? Balance? Security? Laughter? I am sure striving to find mine, as well as to build a better support system for myself. To me, it makes no sense that something like this just shows up and cannot be undone in the same manner in which it came. I have studied medicine extensively, both allopathically and naturopathically, and one thing that I do know is that the body is really a nearly perfect machine that wants to maintain a balance...if WE don't get in the way. So personally, I am sticking to my med protocols and trying to find ways to get out of my way when it comes to the mind-body-spirit pyramid. Unfortunately, I am located in northern AZ, where there is very little knowledge of pemphigus. I am open to all input (except for the get rich quick folks peddling snake oil at the expense of others), but beware: am on high doses of prednisone, so have a pretty good startle/anger reflex. My e-mail, if anyone wants to chat, is yureeka4@yahoo.com, and my name is Paula. Thanks to all who participate in this adventure!
DeleteTry the IPPF foundation. They have free consultation regarding the disease ... great support and support groups around the world.
DeleteI was just diagnosed with PV last month and I too suffer the mouth lesions and have a hard time with food. I have lost 30 lbs in just a few short weeks. Most of the Drs I have seen know very little about PV.
ReplyDeleteIt has made my life miserable to say the least. My mouth got so bad that any food or drink at all was like putting lit fire in my mouth and throat. I never knew there was such a disorder as this and had never heard of it.I hope they can find a cure for us soon. I am glad you put this site up so we can share what we each learn that may help other PV sufferer's.
IPPF foundation - 916-922-1298 - support worldwide
ReplyDeleteIPPF foundation - 916-922-1298 - support worldwide
ReplyDeleteIPPF foundation - 916-922-1298 - support worldwide
ReplyDeleteIPPF foundation - 916-922-1298 - support worldwide
ReplyDeleteSorry to hear you're all going through this but glad to know I'm not alone.
ReplyDeleteSome of the research I've been doing shows a connection between auto-immunes and
"leaky gut syndrome." Looks very right-on to me.
Many years ago my herbalist got me over Epstein Barr, which they said is "incurable" - clearly not
true. But getting another auto-immune shows me I've got an ongoing problem. And I'm pretty sure it
came from overdoing Sugar - I'm a 'choco-holic' to the core, though never been overweight. Other than
sugar/chocolate (Bad!), my diet's been very healthy over the years. "Leaky gut" makes sense.
Just started using high dose Vit C and probiotics (lactobaccillus acidophilus, coconut water/milk, etc),
My major lesions had almost all gone away through limiting my diet to 'no Thiols no Tanins.' Pretty extreme, but it worked for almost 2 years until I had a major stress event 2 months ago.
Dr. said I was doing better than patients using prednisone. But, I did lose a lot of weight - its extreme,
I admit. Then again, we ALL lose weight with this thing!
(I read about the Dr. who learned that limiting thiols - garlic & onions etc - and tanins - chocolate, coffee, tea, etc - helped her patients greatly. Where she lives they have 3 times the population of patients with PV.)
As I said, my mouth went ballistic 2 months ago due to major stress. HAD to try small amount of
prednisone (10mg) which helped very little - but getting Off it triggered another flare - I was so ticked!
I don't want to be on this merry-go-round w/ prednisone (very Unmerry indeed!) so I started researching causes of Auto-immunes - and that's when I found the research on "leaky gut syndrome" and auto-immunes, and the connection to probiotics and healing the gut.
Will let you know what happens if you like. Wondering if anyone would be interested in a more
frequent interaction - maybe there's a way to Group Skype or something? I know that group
support is a Major Player in the Healing Process.
Thanks for responding if you do. Will post this on another page here as well.
Wishing you all Full Recovery and Excellent Health!
ladyiehawk@aol.com
I was wondering how you are doing with your leaky gut & Pemphigus connection. Results?
DeleteHi! Im from Philippines. My Daughter 5 years old Kiyah diagnose with PV on November 2015, It started on July 2015, one morning when my daughter woke up, her face and body started to form a red hot spot making her temperature go high. We rush her to our Pedia Doctor, the doctor said it was a an allergy, then He gave my daughter a Cetirizine and antibiotic for the burned skin, after a week blistered skin started to drained the fluid, then 2 weeks her skin healed but so many dark spots. after a month it strikes again, it looks like a massive allergic reaction, her eyes swollen, her mouth dried and swollen, her body formed so many red spot, I eushed her to her Pedia doctor, the doctor said it is an allergy, we confined her to the hospital but a one or 2 days after we confined her blistering skin show-up, this time her doctor cannot explained it, After 2 weeks blistering skin started to drained the fluid and healed in 2 weeks. November 2015 when started to happen again, this time we go to dermatologist and He gave Prolix(Corticosteroid)this time it seems the Prolix was effective, blistering skin was minimized and easily healed. 10mg of corticosteroid twice a day. and after her skin healed she takes 10mg of cortecosteroid once day for 1 month, then we stop...after a month we stop the steroid PV strikes again, and as she started to flare up, without doctors advice we buy the steroid and 10mg twice a day make her PV slowdown, this time the red hot spots that started to flare-up didn't form a blistering skin, but it leaves a dark skin... :(
ReplyDeleteThis is so bad to have pemphigus vulgaris. I read here https://illnessee.com/pemphigus-vulgaris-pictures/ that this is very painful and uncomfortable illness. Jesus..
ReplyDeletethe best treatment for pv is rituximab treatment. please go ahead and take it. it is life changing. This is from personal experience
ReplyDeleteOne of my cousin(Married in feb)detected with PV.
ReplyDeleteUnder terrific tension.
Shal I suggested her to go with Rituximab 500mg:
My mother have pv. Can anyone help me that which mediclaim cover it. How long it'll take to get the claim.We are not financially sound. Totally helpless condition. Please help us. Mai id- pri.frn99@gmail.com
ReplyDeleteAll,here are few things can help in fighting PV based on my findings and discussion with Aayurved doctor.
ReplyDelete1. Start taking giloy tulsi neem daily twice a day. You can get ready medicine from patanjali as well.
2. Apply organic haldi and honey on blisters on skin and mouth where ever you have.
3. Do pranayam. Kapal bhati and anulom vilom 15-30 mins at least twice a day. Check youtube for guidance.
3.Give positive thought to your mind at night time before sleeping that you are healthy soul. It's called mind programming of your sub conciouco mind.
4.Reduce grains and spices from your meals and increase daliya pulses and fresh buttermilk watermelon.
I will share more soon...Stay healthy and stay positive.
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ReplyDelete