My health journey: Pemphigus Vulgaris

[@evansherman1757]

Feel for you man. I'm 35 years old and have PV since age 30. Started with lesions on my head, then mouth, then groin. I was on cellcept and prednisone for 5 years. Symptoms reduced and largely went away and I got off all medicine. Unfortunately the lesions came back. My doctor put me back on 60mg prednisone and also cellcept, but now he is having me start Retuxan IV to force it into remission. He says that because I am young, and my immune system is so strong, whenever I get sick, and my immune system kicks in the disease flares up. Anyway I just wanted to let you know that you are not alone.

[@GrecianGenesisGirls]

Hi, hope you doing better!! I have oral pemphigus I was recently diagnosed with this rare disease. I’m scared 😟 so much! Please do more videos

[@ggonzalez22gg]

I was diagnosed with PV around October 2016. Began with mouth sores. It was bad to the point that I was only taking in liquids and very soft foods. I had sores in the inside of my cheeks, on my tongue, under my tongue, the roof of my mouth. A few sores on my skin. I was prescribed Prednisone ( short term ) cleared me up pretty good. I take Mycophenolate daily. Over a year later my condition is controlled. I have ocassional flare ups with mouth sores but not as bad as when I started with the PV. Lately I've had more GOOD days than BAD days with this PV. It sucks and unless you have this rare autoimmune disorder you can't know what it's like on those BAD days. The pain and not being able to eat because it's too painful.... I'm hopeful this will keep improving and dare to say that maybe just maybe it will go away. I also use the Nystatin Mouth Wash and there Magic Mouth Wash. They also help. Prednisone is the best but have be aware of the side effects.

[@PorterStephens]

Thank you I truly do appreciate it

[@bent.5649]

I'm in the early stages of this illness and haven't started on any medication yet, just been using mouthwashes but my prescriptions ran out. I'm supposed to start on pills this coming Wednesday. I'm not sure what meds they will give me, should I just tell them give me prednisone? This past week the pain has gotten really bad when eating - I've been losing weight because of the lack of eating. Thanks.

[@PorterStephens]

Beniam Tefferi I would recommend prednisone even though it hasn’t been the solution for me most people with this disease respond quickly when given prednisone

[@bent.5649]

Okay will do, thanks. Good luck on beating this, man.

[@bent.5649]

Not sure how you're doing now, hopefully much better. My symptoms got a lot worse a few weeks ago even on a higher dose of prednisone so my doctor got me approved for Rituxan. I did the first infusion of it yesterday and I have another in two weeks. Has your doctor mentioned it at all? It basically kills the immune system more effectively than the prednisone from what I understand. It will take a few months to take effect but I'm told it's very effective in achieving remission faster compared to just prednisone alone. Ask your doctor about it.

[@awuordeng1386]

I was in the same condition a few months ago but now am doing better. after diagnosis my doctors got me on prednesole which have been super helpful, it took less than a week before i was comfortable to eat again. maybe you should try and discusss the possibility of such medicine.

[@666needffullthings66]

Just one question where does this disease come from? How did you guys get this?

[@PorterStephens]

ROBERT EBo Doctors are still studying into that because no one exactly knows what the cause is.

[@666needffullthings66]

@@PorterStephens how you been buddy ? I know a bit of this my younger brother was diagnosed with PV on Jan 2016 so I just wanted to find out more why and how anyone gets this.

[@kaliwander3479]

My daddy has it. It makes me sad and mad . What can we do? Are there alternatives to these strong medications ? He is on it since 10 years . ❤

[@PorterStephens]

@@kaliwander3479 unfortunately I don’t think there is alternatives. I am still getting blood infusions to this day. I will say though healthy eating and exercise for sure do help a lot. God bless you and your father will include you in my prayers♥️ You’re both strong people, don’t ever let any condition define who you are!

[@NiaJolie]

I agree with Awuor. You need to be be on prednisone and eventually rituxan. Let your doctor know

[@PorterStephens]

Nope Pei I am on and have been on high doses of prednisone for months now

[@PorterStephens]

Nope Pei I believe we will have to take a different approach

[@NiaJolie]

Porter Stephens sorry to hear pred isn’t working. I’m sure you’ll do well on Rituxan. I wish you well

[@fraciscoramirez9466]

How are you doing now

[@abdiazizibrahim2525]

Anyone who try ayruveda medicine is there please contact me

[@ScottJenningsFittech]

It's a word if you say it is

[@jennleema1034]

Are you Jewish?

[@PorterStephens]

Jenn LeeMa I am not