Welcome to my channel, my name is Gabby. I am not only trying to survive but do it with as much joy in my life as possible. I have an autoimmune disease called Pemphigus Vulgaris that I developed in my late teen years. Im glad to share my journey with you in hopes that if you also have PV that I may help you in some way, if you don't have PV I'm glad to share my story with you.
Ritumaximab injection helped me. My doctor said taking steroids for long term have more side-effects than this injection. I'm getting blisters again but now taking low dosage of steroids like 10mg or 5mg. And what helped me for sleeping is, after many trials was coconut oil applied on banana leaf. To avoid sticking of skin on bed. It would be helpful if you tell what diet you follow.
@@nalininalini7502 hi I’m sorry for late reply, I have not had anything different in a while and have been busy working but I really want to make more videos and plan to do so soon
@@manjulac2489 that’s really interesting, I have been in both humid and dry climates and haven’t really seen a difference in my disease it kind of just stays the same
Sorry for the late response, I am still taking medication for it , I’m on 10 mgs of prednisone and I take dapsone. It’s mostly under control but my scalp is still flaring
Mam i have 8 to 10 blisters now am taking tab prednesone 20 then 17.5 then 15 then 12.5 then 10 for 2 months. Now no blisters only gum sore is there but no irritation. I have lot of worry i dont have baby. Wt diet i have to follow and wt to avoid pls reply me. How many years u have this problem mam.
@@Gauri-f4i it’s not that fragile anymore, when I was in high dosage of prednisone it was very thin and would bread easily, but now I feel like it’s pretty normal, I’m on 10 mg of prednisone and 100mg of dapsone now.
I just might be positive in the mild scenario. I have a few blisters in the mouth and it's been 2 months. Just tests are very borderline 18u/ml what was yours? What is the start of all this. How is your hygiene and food changed?
I don’t remember the tests and I don’t have them available, there are different triggers I think, and in sure mine was triggered by birth control pills. I don’t feel like food made that big of a difference looking back now, I think I was hopeful then .
I have pamfigus valgarius Last 6 year and prednisolone 8 mg dose .can u share me your diat and moon face reduce ,skin care and what can we avoid in this situation
Hi, I think normally the moon face goes away after you’re off prednisone or steroids, but I do have other videos on my channel that might be able to answer other questions you might have
Thank you for sharing gabby not a lot of content with this autoimmune disease PV. It was a complete life change for me. I appreciate you sharing what you go through with PV.
I’m so glad your posting again. I feel like there’s not enough awareness on pemphigoid. Can i ask you and @bassistbpl ? By any chance did you get the covid shot?
Oh okay , i had gotten the vaccine because they made it mandatory at my job and i was healthy then . So i did have in the back of my mind wether something in the vaccine caused me to get bullious pemphigoid. Well girl keep posting love your content and i will definitely continue to support. By the way you look great!
@@stephaniedeleon5853 I have heard other people say that they have gotten diagnosed with PV after they got the COVID vaccine and think that was the trigger, I’m sorry that happened to you if that was the culprit, this disease is a tough one , keep on girl I know you’re strong. And thank you I appreciate your support. I will definitely keep posting
Hey, yeah It’s been a real roller coaster for me, it had come back worse than ever but I am doing really well at the moment, though my scalp is still not 100%
I had to get an infusion and it cleared it up for a couple of months. But I’m starting to flare up so doctor told me to take doxycycline for a couple of days. It start healing but not fully I’m thinking probably because of the heat. I work in a no climate control building so it gets really hot. Do you get any flare ups when it’s hot?
@@edwardvega4607 not really but also I don’t spend much time in the heat, I’m a stay at home mom so I usually have the ac on, would you do another infusion or is it too soon for another one ?
@@goodngabby I’m trying my best not to get another infusion so I’m taking antibiotics when needed and trying to stay of the heat. If it starts getting worst I might need to but would rather not do it
@edwardvega4607 my doctor seems to be leaning towards the rituxan infusions , is this what you got? Any bad reactions or why you wouldn't recommend. I really don't like being on prednisone plus cellcept and honestly I don't feel like they will be able to reduce my prednisone anymore as my body still seems like it wants to flare. But the side effects of prednisone are not good so I don't want to be on it forever.
The most important that I have from experience patient (20year).. 1-eat the diet can improve your gutt /stomach 2-Diet on daily menu 3-good sleep 4-less stress /avoid stress
Hi gabby.. I pray u getting better.. I'm share sickness like u.. Here I wanne share abit my experience on diet.. Stop taking sugar, less carbo, less sea food(taking certain fish only) If you have daily diet eating pls kindly share here. AND for suppliment I do take virgin olive oil, and some herb that improve imunity system. I would like to know what latest update from u..i been suffering this for one year plus.. Once getting better and it comeout again.. Last time I didn't practice diet.. Just taking madicine. But now I start practice diet
I have friend and she is in pain she don't want to go to the doctor she thinks there's nothing they can do for her. What's the name of the steroids medicine your were taking mommas?
Read Dr. Steven Grundy and also Amy Meyers. They have similar but different ideas but have spent a lot of time refining diet. I'm helping a family member and trying to learn more. Sometimes advicie conflicts . i have learned alot and people say to keep away from Nightshade vegitables and GLUTEN... when you follow the people I mentioned you learn why. I hope this will help and also if you are on certain medications some of them can aggravate Pemphigus.
My mom is also affected with PV from last 3 years One year ago her treatment is done with 4 doses of rituximab injection but after a year lesions come back rapidly. Now my dr. Suggesting again take rituxan inj of 2 doses only.
I am 6 weeks pregnant and I have pemphigus vulgaris from august…. I am scared about the baby …. Does it transfer to baby as well or is there any way to stop it to transfer…
I just might be positive in the mild scenario. I have a few blisters in the mouth and it's been 2 months. Just tests are very borderline 18u/ml what was yours? What is the start of all this. How is your hygiene and food changed?
Thanks Gabby, I cried just listening to you. I am struggling with fear, anxiety and what could happen to me. I really want to take every step needed so I won’t get to a point we’re PVvis not controlled .
Gabby, you are awesome!! All the things you are going through are very difficult, but seriously you are fighting this thing like a champ. Your strength is really inspiring and I wish you nothing but good health and happiness. I hope that your symptoms get better soon, and I hope we hear from you again <3
Hello my cousin is effected by the disease and she's really bad cuz we have no knowledge abt the disease can u please tell me which drugs u take the names so we can compare with the medication she takes
I'm 50 and just got diagnosed with this I've got sores everywhere and spreading, it is really depressing I can't even comb the top of my head it's very painful. I am really sorry you have this at such a young age!
