Going on 5 years of having pemphigus vulgaris seen many doctors before being diagnosed. I must say this disease is no joke and is very much painful and is a daily battle. I pray we get a cure soon.
my mother is suffering from this disease from the past 14 years. She now takes a better form of steroids which have least side effect unlike in the initial years. She was on death bed in the hospital in 2008, two patients diagnosed with the same disease died when she was admitted. She was the only one who survived. Pemphigus is a very serious life-threatening disease but with timely diagonosis, you can surely win(she was diagnosed within 4 months approx). Good wishes to all the patients, you should know you are not alone. Optimism is the strongest medicine against this disease than any steroid. My mother stayed optimistic throughout and now she lives an almost normal life.
Thank you so much for this. I was recently diagnosed with PV. I had no idea this disease existed but it has been such a challenge. I started treatment last week and am hoping to feel better soon
@@user-xg9jb3nz9v stay safe in this Corona pandemic......steroids are immunosuppressants......you'll be more susceptible......take extra pre cautions.....if your consuming them..
Good to hear that your mother is fine now.My mother is suffering from this for last 7 years. Can you tell which medicines your mother is on right now and did you take rituximab injection too?
This year makes my 25th year of having Pemphigus, and I tell you I feel like my life was stripped from me. I couldn't go to school or work. I don't go out during the summer cause the heat makes my skin flare up and burn; then in the winter I catch colds very easy because my skin has thinned. I just pray that they find a cure for it. The steroids made me gain a lot of weight also what upsets me is that where ever I blister up it leaves black marks cause the skin is damaged. For years I've searched for meds and lately I found Biotin+Keratin with Alpha Lipoic Acid and i'm telling you that it really works! I now only take my steroids once a week, my skin is actually healing, I only take one pill a day. I'm informing who ever is reading this, give it a try. What the doctors are not telling you is the culprit to Pemphigus is a whole bunch of food allergies rolled up into one. I found out when i started paying attention to what i was eating because it seemed like I would flare up whenever I consumed food. So what I did was the intermediate diet and removed all herbs and spices except for a bit of salt but I would still have flare ups but really bad ones. What I noticed that everything that I was consuming contained Niacin and that was the main culprit along with the others that I mentioned above. Ok all foods have some Niacin it can't be completely avoided but taking the Biotin+Keratin with Alpha Lipoic Acid you will see a tremendous change ! Google this product for the information and it is very cheap only about $7.00 for a bottle containing 90 pills from Pipin Rock. I just wanted to share my knowledge because if someone know something I'd want them to tell me. Just think if doctors told you everything they would be out of a job, so I'm telling you because I have nothing to lose or gain by sharing what I know, I'm here to help.
R u sure mam Biotin+keratin with alpha lipoic acid works and how can i get this My mom suffered alot with pemphigus We'd given her retuximab n steroid too but its just helpful for limited time
Omg luv i hear u and i feel all your pain i got it when i was 9 years old im 35 now so i have been dealing with this for a long time fell free to contact me please.
My father is 57 years old and has been suffering from this disease ‘Pemphigus Vulgaris for 10 months.Has used different types of drugs such as "Prednisone" and "Azathioprinium" and has not shown results. Now the condition is only getting worse, please if may you recommend something to me.It's very urgent!🙏
My teenage daughter was just diagnosed with pemphigus vulgaris in her anus...it has been very painful for her. Biopsy results are pending. She had surgery to drain cyst. Initially DR believed it was ulcerative colitis. She gets to go home today after 5 days in hospital. I have read up on the disease and it seems to affect older people, she is 16...I am so confused and wondering where I can get more information.
This question is for the patient could you please tell me what made get better and I thank God for it and for all the people that have it. My sister has it and I don’t know how to help her please let me know because you sound great thank May God heal y’all and bless you
Is there anyone who recover from this disease ? last 5 months ago , this disease comes to my life and now cures are even in my head , can i get the old myself again ? im still 22 and there left a lot that i need to do . Yep, I try to live positively but sometimes I feel lost and not sure . Plz tell me , can i live alive as a normal one again , is there still a chance to meet with healthy myself ?
hospital in Amsterdam until I was so sick and almost dead. The expertise dermatologists team in Groningen find out about Rituximab. It's a chemo treatment by infusion and after 4 cures (1 a 6 months) 2 years I am off the medicine, prednisone methrodex, Dapson everything. And no more blisters and erosion of my body. I am free and cured. Rituximab saved my life!!. I was 28 when I got it I am 40 now.
Hi Han! When I read your post I almost cry!! I have been there for many years and yes there is hope!! Omg I struggled so long time over 12 years. I almost died from infection my skin was open en infected from head to toe inside and outside. Had seen every hosp
does anyone know a good place in the world to treat 2 young poor sisters from this Pemphigus Vulgaris.. like what country and what city and hospital pls. we are looking for a doner to pay all the expenses but enshallah we can find that easily if we can just know the distination. thanks in advance
My mother was diagnosed with bullous pemphigoid at the age of 87 . 3 years ago my mother was covered with blisters and pain . We went to doctors / dermatologist my mother was treated with prednisone , cancer treatment medication ,and steroids she was in and out of the hospital. Finally I went online and found a dermatologist in South Carolina Myrtle Beach South Carolina who name is dr. Robert Bibb he started treating her immune system today my mother's doing fine she's 90 years old. If you serious about finding a dermatologist go online look up dr. Robert Bibb Myrtle Beach South Carolina
My recommendation would be to seek out an ayurvedic doctor...my mom kept getting misdiagnosed by one MD after another to the point she got down to 98 pounds bescuse the sores where so bad in her mouth.... Found out that this disease if very common in India but they treat it with ayurvedic medicine.. (plants and diet)....found a former RN who went back to school for ayurvedic medicine and made an appointment for my mom....she told my mom everything that had been going on with her body, gave her a powder of mixed plants and herbs (don't remember what) to mix with water and drink then told her what foods she needed to start and stop eating as well as avoiding STRESS....the results were remarkable but my mom started feeling better to the point that she went back to the old diet and just really attempted to do too much too soon... she was already a type 1 diabetic so that didn't help....we already know that the pharmacutical industry has NO desire to go to a holistic approach to treating people not to mention the fact that most treatment here in the States is steroids for this disease along with the fact that most american doctors take almost no courses in nutrition during med school....FIND A GOOD AYURVEDIC DOCTOR AND SEE IF THEY CAN HELP!
This has destroyed me for 6 years now. Dr don't want to see me not even clinic's. All afraid of pemp. No money denied help. Tired of drs playing GOD. Turned 56 begging someone for help doctor s just pain shot And told to find a physician. Ben Rad a doctor who treated me for pv only as I paid. Now broke and doctor less. My organs damage from meds. Sorry for all who share this, May we have mercy!!!!!
Going on 5 years of having pemphigus vulgaris seen many doctors before being diagnosed. I must say this disease is no joke and is very much painful and is a daily battle. I pray we get a cure soon.
R u okey now wht the medics are running now my mother is also suffering from this diseace
please see Ravi paneri videos even i am hvg pem might work for u r mother .
my mother is suffering from this disease from the past 14 years. She now takes a better form of steroids which have least side effect unlike in the initial years. She was on death bed in the hospital in 2008, two patients diagnosed with the same disease died when she was admitted. She was the only one who survived. Pemphigus is a very serious life-threatening disease but with timely diagonosis, you can surely win(she was diagnosed within 4 months approx). Good wishes to all the patients, you should know you are not alone. Optimism is the strongest medicine against this disease than any steroid. My mother stayed optimistic throughout and now she lives an almost normal life.
Thank you so much for this. I was recently diagnosed with PV. I had no idea this disease existed but it has been such a challenge. I started treatment last week and am hoping to feel better soon
@@user-xg9jb3nz9v stay safe in this Corona pandemic......steroids are immunosuppressants......you'll be more susceptible......take extra pre cautions.....if your consuming them..
Good to hear that your mother is fine now.My mother is suffering from this for last 7 years. Can you tell which medicines your mother is on right now and did you take rituximab injection too?
@@shahrozkhan7481 She takes Deflazacort 6 mg(alternative days or twice a week... depends), MMF-S(thrice a day), Ciara B3(mrng and evng).
Hi so glad to hear your mom is doing well.what steroids was prescribed?
This year makes my 25th year of having Pemphigus, and I tell you I feel like my life was stripped from me. I couldn't go to school or work. I don't go out during the summer cause the heat makes my skin flare up and burn; then in the winter I catch colds very easy because my skin has thinned. I just pray that they find a cure for it. The steroids made me gain a lot of weight also what upsets me is that where ever I blister up it leaves black marks cause the skin is damaged. For years I've searched for meds and lately I found Biotin+Keratin with Alpha Lipoic Acid and i'm telling you that it really works! I now only take my steroids once a week, my skin is actually healing, I only take one pill a day. I'm informing who ever is reading this, give it a try. What the doctors are not telling you is the culprit to Pemphigus is a whole bunch of food allergies rolled up into one. I found out when i started paying attention to what i was eating because it seemed like I would flare up whenever I consumed food. So what I did was the intermediate diet and removed all herbs and spices except for a bit of salt but I would still have flare ups but really bad ones. What I noticed that everything that I was consuming contained Niacin and that was the main culprit along with the others that I mentioned above. Ok all foods have some Niacin it can't be completely avoided but taking the Biotin+Keratin with Alpha Lipoic Acid you will see a tremendous change ! Google this product for the information and it is very cheap only about $7.00 for a bottle containing 90 pills from Pipin Rock. I just wanted to share my knowledge because if someone know something I'd want them to tell me. Just think if doctors told you everything they would be out of a job, so I'm telling you because I have nothing to lose or gain by sharing what I know, I'm here to help.
You tube DR smita chakote
Sick too with pv. You can help me. Me not to smart. Burning fevers cause brain pains also.
R u sure mam Biotin+keratin with alpha lipoic acid works and how can i get this
My mom suffered alot with pemphigus
We'd given her retuximab n steroid too but its just helpful for limited time
Omg luv i hear u and i feel all your pain i got it when i was 9 years old im 35 now so i have been dealing with this for a long time fell free to contact me please.
Patricia Gaskins do you recommend any pills or any other things that may help ? please I’d like to know more information.
My father is 57 years old and has been suffering from this disease ‘Pemphigus Vulgaris for 10 months.Has used different types of drugs such as "Prednisone" and "Azathioprinium" and has not shown results. Now the condition is only getting worse, please if may you recommend something to me.It's very urgent!🙏
My father too. Hes 58 years old also whose suffering for 6months now.
Did u get a reply for the treatment. I need treatment for it too plz help
@@keridalindo5772 you may be use deflazacort or omnacortil
Where do you live ? My dermatologist is a genius. I healed really soon
@@janhavioza8613 what did your dermatologist prescribe? could you share please
I have this disease too, no joke. It started in my mouth first. Now my Doc is giving me Imuram & melone tab .
Hi, How is it after taking the melone tab?
going on 2 years .. pemphigus erythematosus..still hoping to find that magic med mix :)
My teenage daughter was just diagnosed with pemphigus vulgaris in her anus...it has been very painful for her. Biopsy results are pending. She had surgery to drain cyst. Initially DR believed it was ulcerative colitis. She gets to go home today after 5 days in hospital. I have read up on the disease and it seems to affect older people, she is 16...I am so confused and wondering where I can get more information.
Hey how's your daughter now?
My wife has it and its the same story it took many doctors before she was diagnosed.
This question is for the patient could you please tell me what made get better and I thank God for it and for all the people that have it. My sister has it and I don’t know how to help her please let me know because you sound great thank May God heal y’all and bless you
Thank you for wonderful information
Is there anyone who recover from this disease ?
last 5 months ago , this disease comes to my life and now cures are even in my head , can i get the old myself again ? im still 22 and there left a lot that i need to do . Yep, I try to live positively but sometimes I feel lost and not sure . Plz tell me , can i live alive as a normal one again , is there still a chance to meet with healthy myself ?
hospital in Amsterdam until I was so sick and almost dead. The expertise dermatologists team in Groningen find out about Rituximab. It's a chemo treatment by infusion and after 4 cures (1 a 6 months) 2 years I am off the medicine, prednisone methrodex, Dapson everything. And no more blisters and erosion of my body. I am free and cured. Rituximab saved my life!!. I was 28 when I got it I am 40 now.
Hi Han! When I read your post I almost cry!! I have been there for many years and yes there is hope!! Omg I struggled so long time over 12 years. I almost died from infection my skin was open en infected from head to toe inside and outside. Had seen every hosp
for d problem in d mouth, u can use Nincort Oral Gel , take B complex , its help. Now my mouth problem gone!
Which one exactly
my mother had pemphigus vulgaris. she cured from out sides. she still on medicine.
raat jaga ekti tara pls give me your contact number because of my mother already suffering pemphiod
No please
does anyone know a good place in the world to treat 2 young poor sisters from this Pemphigus Vulgaris.. like what country and what city and hospital pls. we are looking for a doner to pay all the expenses but enshallah we can find that easily if we can just know the distination. thanks in advance
Search dr. Ravi paneri on RUclips. He treats pemphigus with ayurveda
well thank you so much may God bless you
My mother was diagnosed with bullous pemphigoid at the age of 87 . 3 years ago my mother was covered with blisters and pain . We went to doctors / dermatologist my mother was treated with prednisone , cancer treatment medication ,and steroids she was in and out of the hospital. Finally I went online and found a dermatologist in South Carolina Myrtle Beach South Carolina who name is dr. Robert Bibb he started treating her immune system today my mother's doing fine she's 90 years old. If you serious about finding a dermatologist go online look up dr. Robert Bibb Myrtle Beach South Carolina
Has someone helped yet.
My recommendation would be to seek out an ayurvedic doctor...my mom kept getting misdiagnosed by one MD after another to the point she got down to 98 pounds bescuse the sores where so bad in her mouth.... Found out that this disease if very common in India but they treat it with ayurvedic medicine.. (plants and diet)....found a former RN who went back to school for ayurvedic medicine and made an appointment for my mom....she told my mom everything that had been going on with her body, gave her a powder of mixed plants and herbs (don't remember what) to mix with water and drink then told her what foods she needed to start and stop eating as well as avoiding STRESS....the results were remarkable but my mom started feeling better to the point that she went back to the old diet and just really attempted to do too much too soon... she was already a type 1 diabetic so that didn't help....we already know that the pharmacutical industry has NO desire to go to a holistic approach to treating people not to mention the fact that most treatment here in the States is steroids for this disease along with the fact that most american doctors take almost no courses in nutrition during med school....FIND A GOOD AYURVEDIC DOCTOR AND SEE IF THEY CAN HELP!
I just got my biopsy results today. . . I have pemphigus vulgaris very very painful
This has destroyed me for 6 years now. Dr don't want to see me not even clinic's. All afraid of pemp. No money denied help. Tired of drs playing GOD. Turned 56 begging someone for help doctor s just pain shot And told to find a physician. Ben Rad a doctor who treated me for pv only as I paid. Now broke and doctor less. My organs damage from meds. Sorry for all who share this, May we have mercy!!!!!