Hey guys! Just thought I would give this video an update - It's been 3 years since I made this video and I actually got covid a few weeks ago. I don't know if anyone else with P-FAPA has had the same experience, but it really negatively impacted me. I am triple vaccinated but I got hit really hard, and even though I am negative for covid now, I have a really bad P-FAPA flare up and I am currently on a 3 day dose of prednisone and a mouth wash for the mouth ulcers. I would definitely recommend being cautious about getting covid for anyone who has P-FAPA. I could barely walk up the stairs, go outside, take care of myself and I am just starting to be able to. Also, at the time of this video, I had never taken prednisone, but now I have taken it 3-4 times only when I am desperate and not getting better. I still get flare-ups fairly frequently and I don't want to make a habit of it. Right now university exams are starting and I was not getting better and could barely focus on school work so it definitely called for a dose of prednisone. Hope everyone is doing well :)
How does your nutrition look like? Your body is loaded with chemical medications and it needs to get cleaned up. Search for Natural Hygiene. Feel better and good luck with the exams🙏
Surprised to see this on TH-cam! Most doctors I talk to don’t even know what this disease is, and I’ve struggled with it for 15 years, maybe longer! Predisnone is the only thing I can count on when the fevers and malaise are crippling. I wish there was a better treatment for the ulcers, mine are so bad I can’t eat.
I know its brutal :( I take probiotics now and they help a lot - the insane amount of pain medication I have taken over the years has caused me bad stomach problems but they really seem to help :) and yes I know, I've done a lot of research and there's not a lot of information out there. In addition, whenever I tell a doctor about it none of them know what it is lol
actually difficult finding videos about pfapa I just was diagnosed with it and have been dealing with it for a year and get it once every month and it last for about a week it just destroys me. turned 20 couple days ago and am just happy they finally found something
It is so hard to deal with. So sorry you're going through this. Honestly when it is at its worst, the only thing that helps me is advil and tylenol. I try to take more advil than tylenol because it is an anti-inflammatory and P-FAPA causes inflammation. When you aren't sick, take immune supplements, vitamin D everyday, probiotics, and maintain a healthy diet and exercise consistently. Also, I am in university and even when there was no pandemic I would wear a mask in class because my immune system would be weak. I made sure to have good hygene, and would have to rest when I was tired. Message me if you ever have any questions!
@@melissalman3312 Most people develop it as a child, but some people get it as adults. It is characterized by high fevers that come for a week every month, typically on a schedule much like a period. In addition, your muscles will swell and you will have aches and pains, and some get lesions on their tongue during their episodes. For me the biggest thing I dealt with was it felt like knives all over my body whenever I got it.
Praying for him! It's so tricky to live with, especially because there is not much you can do besides wait for the pain to go away. Some tips I would say is take probiotics, I also recommend having a strict, healthy diet and consistent exercise. I try to stay as healthy as possible to help my body cope with episodes.
Thank you for posting this. I am 17 and have been struggling for a year and just the other day my docotors finally diagnosed me with p-fapa. I learned a lot from this video. Thanks again
OMG! I've never met someone else my age who still has flare-ups. I still get plenty of mouth sores and white spots on tonsils pretty frequently. Those happen more often than the high fevers now, but it really was like clockwork from birth up until I graduated high school. I also had a crap immune system- I got chickenpox from the chickenpox vaccine! For me, stress, poor eating habits, and sleep deprivation really triggered my flare-ups. Luckily, for PFAPA it's a low dose (20-40 mg should end the flare-up within a day for me) and you only take it once at the beginning of the flare-up once the fever begins. I think it's only dangerous when taken at high doses or consistently in a short period of time, so I would definitely recommend just going with Prednisone when you get a flare-up if you're medically able. For anyone with kids who get sick like this, keep a log of when they get sick, how often, and what the symptoms are. Doctors just don't know about PFAPA, so they slap "viral infection" on the record and your kid ends up feeling awful for weeks due to secondary infections, fatigue, and trying to catch up on missed schoolwork. Because flare-ups happen so often, sometimes you can't even afford to miss school so you just have to dose up on Advil and go in sick. Catch it early! Even if your kids have to take Prednisone, you can choose which flare-ups need to be dealt with (ex. around a birthday or important exam or vacation) and which you can let run their course if you're worried about taking it so often. Your kids will thank you for it lol.
Yes it does seem to be rare for people to still have it when they are fully grown adults - all of the research I've done has always said it stops near puberty. I don't have the tongue ulcers anymore but I get horrible flare ups of the fevers and body pain and it makes it difficult to sleep and carry out daily tasks. I've never tried prednisone cause I was hesitant to try a drug like that cause I've had so many health problems and drugs have caused a lot of stress for me haha
Thank you for this, I’m 18 and I have been diagnosed with PFAPA a few years ago. I have had it since a baby and tonsillectomy and adenoid surgery have not solve the problem. Well, at least now I know it’s really PFAPA (took a long time to figure it out since there are a lot of doctors who don’t even know that the disease exists). As for the prevention, I honestly don’t do much to stop it, a lot of doctors have told me that it’s caused by your own immune system so I guess I just gave up on trying to prevent it. What I have been doing lately that really changed my life is taking one shot of prednisone when the crisis begins - it honestly makes me feel better after hours of taking it and it’s only harmful if you take the medicine a lot of times in a short period! So, guess I’m lucky that the prednisone works on me, because now I don’t really get sick for more than a couple hours on evey 2 weeks :) BTW, I totally agree with you on how hard it is to work out when you have PFAPA, it’s so annoying having to stop exercising when you get sick so constantly.
Hi there! Yes I agree prednisone works really well. I have not tried the tonsillectomy or the adenoid surgery and honestly I don't want to because I have had a couple surgeries, and I felt very sick from the anesthesia for a long time. I took my first prednisone shot ever this past summer in August I had to go to the hospital because I was so sick I could barely walk and breathe, and it made me recover in a week which was the fastest I ever have. I don't want to get into the habit of taking it too much, but I was working 7 days a week at the time so it was a lifesaver. I hope you get better and if you ever have questions let me know :)
Try the tart cherry chewables, lots of pfapa patience had good results with that and a higher dosis of vitamin D is mandatory. 1000iu is not enough. All the best for you xx
Also little update for anyone interested!! -I am able to kiss people now without getting sick (if i kiss someone new i normally go home and take extra immune supplements and gargle well with listerine) -i am able to take more tylenol and advil (extra strength) without getting side effects -i can also drink out of someones cup but same thing I just take extra immune supplements just in case !
Thank you for sharing your story. ❤️ My daughter started showing symptoms at 1. By the time she was 2 we finally had a diagnosis. Her episodes were really bad and I was scared to give her steroids, since she was so little. At 2 1/2 I opted for her to have surgery. She still has an episode here and there but NOTHING like before. If she does get a fever it’s maybe for 2 days instead of her usual 5. I was wondering what options were available for you when you were a child? Did you have surgery as well?
Great job! Thank you for sharing! My 10 yro son is P-FAPA. First of all, I'm sorry you're dealing with this. So did you say you have a weak immune system now? Do you still have flare ups or did those subside at age 11? Did you ever receive chiro treatments from you Dad and if so, did that help relieve symptoms?
Yes chiro treatments from my dad helps so much! Some nights I would wake up and not be able to breathe, he would adjust me, and it would help me fall asleep. I would definitely recommend. Also, I would suggest to your son to start taking probiotics now if he can. I have stomach problems like bad acid reflux and I'm scared I will get a ulcer at some point from all of the pain medication I have taken. It really helps me and I'm in university now and I've been doing a lot of reading about how the health of your gut (gut microbia) plays a big role in the health of your immune system. When I was 11, the consistent episodes that happened for 1 week every month stopped. Now, I get flare ups for typically a few months a year randomly. The doctors said with most patients it stops after puberty, but they are now discovering that some patients continue to have episodes later in life, and some people can even develop P-FAPA in adulthood. If you ever have any questions feel free to message me! I have done lots of research and theres not a lot out there.
@@maddiesilvester8230 thank you!!! I’m sorry I didn’t see this sooner and reply. I’m not good w TH-cam . He started taking a high-quality pre and probiotic. Appreciate the recommendations.
@@nikkirwest I take a probiotic everyday and whenever I get my episodes I get prescribed prednisone and typically an antibiotic as well and it makes the episodes last not as long. Also, I would recommend he take an omega 3 supplement everyday! I'm in a pre-med nutrition course and I've learned a lot about its health benefits and I've started taking that everyday as well :) hope he is doing well!
Ive had recurring tonsilitis, horrible painful infections in my throat since i was about 5. Im 23 and just now a doctor suggested that i might have pfapa. I had white mouth sores when i was a child, but don't have them often anymore. My fevers while I'm sick don't rise very high either anymore. But the tonsil infections and swelling of the lymph nodes keep happening every month-two months, so PFAPA is on the table... How do you get a clear diagnosis of this disease? Thank you so much for this video! ❤️ Im really so tired of being sick and in pain so frequently, this makes me feel like im not alone
Hi there! So sorry to hear, I know how difficult it is living with P-FAPA. I was diagnosed at Sick Kids hospital in Toronto after about a decade of tests since I was a baby. They first thought I had leukaemia and a bunch of other different diseases for years. I started testing when I was less than 1 year old, and I was diagnosed when I was 11. I would suggest trying to go to a specialist through your family doc. Any family doc I've ever spoken to hasn't heard of P-FAPA so I would suggest trying to see someone who specializes in auto-immune disorders.
Thanks for the tips! Just took my first dose of predisone today. Hopefully it works! From what I see online, the doctor might have prescribed me too small of an amount. Is it OK to ask how many miligrams you take when a Pfapa episode starts? what doesage in your experience is most affective? Thanks again from this video! Made me feel not alone in this, and its good to have online buddies to consult with. In my country there isn't much knowledge about this syndrome so I have to find answers on my own
Hello Maddie. Can you make subtitles available on your video? We belong to a French non profit that gathers all videos on each rare condition in a sort of Netflix of rare diseases (app.ewenlife.org if you are curious). A research about PFAPA has been asked by a patient. But most of our viewers do not speak English. So they need autotranslation. But the option "subtitle" has to be activated to do so. Could it be possible?
Hello.. I get low grade fever in every 2-3 months, and nearly 1 week before or after the fever I get aphthous stomatitis... Is it PFAPA? Or It can be something else? I don't get high fevers... It's low grade fever all the time... please help!
Below is another article that I found really helpful for anyone wanting more updated information ! ped-rheum.biomedcentral.com/articles/10.1186/s12969-016-0101-9
It’s so interesting to watch you talk about masks pre Covid 😅
Hey guys! Just thought I would give this video an update - It's been 3 years since I made this video and I actually got covid a few weeks ago. I don't know if anyone else with P-FAPA has had the same experience, but it really negatively impacted me. I am triple vaccinated but I got hit really hard, and even though I am negative for covid now, I have a really bad P-FAPA flare up and I am currently on a 3 day dose of prednisone and a mouth wash for the mouth ulcers. I would definitely recommend being cautious about getting covid for anyone who has P-FAPA. I could barely walk up the stairs, go outside, take care of myself and I am just starting to be able to. Also, at the time of this video, I had never taken prednisone, but now I have taken it 3-4 times only when I am desperate and not getting better. I still get flare-ups fairly frequently and I don't want to make a habit of it. Right now university exams are starting and I was not getting better and could barely focus on school work so it definitely called for a dose of prednisone. Hope everyone is doing well :)
How does your nutrition look like?
Your body is loaded with chemical medications and it needs to get cleaned up.
Search for Natural Hygiene.
Feel better and good luck with the exams🙏
Surprised to see this on TH-cam! Most doctors I talk to don’t even know what this disease is, and I’ve struggled with it for 15 years, maybe longer! Predisnone is the only thing I can count on when the fevers and malaise are crippling. I wish there was a better treatment for the ulcers, mine are so bad I can’t eat.
I know its brutal :( I take probiotics now and they help a lot - the insane amount of pain medication I have taken over the years has caused me bad stomach problems but they really seem to help :) and yes I know, I've done a lot of research and there's not a lot of information out there. In addition, whenever I tell a doctor about it none of them know what it is lol
actually difficult finding videos about pfapa I just was diagnosed with it and have been dealing with it for a year and get it once every month and it last for about a week it just destroys me. turned 20 couple days ago and am just happy they finally found something
how old are u? i think i have the same ilness
It is so hard to deal with. So sorry you're going through this. Honestly when it is at its worst, the only thing that helps me is advil and tylenol. I try to take more advil than tylenol because it is an anti-inflammatory and P-FAPA causes inflammation. When you aren't sick, take immune supplements, vitamin D everyday, probiotics, and maintain a healthy diet and exercise consistently. Also, I am in university and even when there was no pandemic I would wear a mask in class because my immune system would be weak. I made sure to have good hygene, and would have to rest when I was tired. Message me if you ever have any questions!
@@melissalman3312 Most people develop it as a child, but some people get it as adults. It is characterized by high fevers that come for a week every month, typically on a schedule much like a period. In addition, your muscles will swell and you will have aches and pains, and some get lesions on their tongue during their episodes. For me the biggest thing I dealt with was it felt like knives all over my body whenever I got it.
Thank you for this video! Greetings from Italy!
my grandson suffers from this since birth and now with coronavirus its so hard on our family
thank you for sharing your story
Praying for him! It's so tricky to live with, especially because there is not much you can do besides wait for the pain to go away. Some tips I would say is take probiotics, I also recommend having a strict, healthy diet and consistent exercise. I try to stay as healthy as possible to help my body cope with episodes.
Thank you for posting this. I am 17 and have been struggling for a year and just the other day my docotors finally diagnosed me with p-fapa. I learned a lot from this video. Thanks again
No problem! Shoot me a message if you ever have a question :)
OMG! I've never met someone else my age who still has flare-ups. I still get plenty of mouth sores and white spots on tonsils pretty frequently. Those happen more often than the high fevers now, but it really was like clockwork from birth up until I graduated high school. I also had a crap immune system- I got chickenpox from the chickenpox vaccine! For me, stress, poor eating habits, and sleep deprivation really triggered my flare-ups. Luckily, for PFAPA it's a low dose (20-40 mg should end the flare-up within a day for me) and you only take it once at the beginning of the flare-up once the fever begins. I think it's only dangerous when taken at high doses or consistently in a short period of time, so I would definitely recommend just going with Prednisone when you get a flare-up if you're medically able.
For anyone with kids who get sick like this, keep a log of when they get sick, how often, and what the symptoms are. Doctors just don't know about PFAPA, so they slap "viral infection" on the record and your kid ends up feeling awful for weeks due to secondary infections, fatigue, and trying to catch up on missed schoolwork. Because flare-ups happen so often, sometimes you can't even afford to miss school so you just have to dose up on Advil and go in sick. Catch it early! Even if your kids have to take Prednisone, you can choose which flare-ups need to be dealt with (ex. around a birthday or important exam or vacation) and which you can let run their course if you're worried about taking it so often. Your kids will thank you for it lol.
Yes it does seem to be rare for people to still have it when they are fully grown adults - all of the research I've done has always said it stops near puberty. I don't have the tongue ulcers anymore but I get horrible flare ups of the fevers and body pain and it makes it difficult to sleep and carry out daily tasks. I've never tried prednisone cause I was hesitant to try a drug like that cause I've had so many health problems and drugs have caused a lot of stress for me haha
Thank you for this, I’m 18 and I have been diagnosed with PFAPA a few years ago. I have had it since a baby and tonsillectomy and adenoid surgery have not solve the problem. Well, at least now I know it’s really PFAPA (took a long time to figure it out since there are a lot of doctors who don’t even know that the disease exists). As for the prevention, I honestly don’t do much to stop it, a lot of doctors have told me that it’s caused by your own immune system so I guess I just gave up on trying to prevent it. What I have been doing lately that really changed my life is taking one shot of prednisone when the crisis begins - it honestly makes me feel better after hours of taking it and it’s only harmful if you take the medicine a lot of times in a short period! So, guess I’m lucky that the prednisone works on me, because now I don’t really get sick for more than a couple hours on evey 2 weeks :) BTW, I totally agree with you on how hard it is to work out when you have PFAPA, it’s so annoying having to stop exercising when you get sick so constantly.
Hi there! Yes I agree prednisone works really well. I have not tried the tonsillectomy or the adenoid surgery and honestly I don't want to because I have had a couple surgeries, and I felt very sick from the anesthesia for a long time. I took my first prednisone shot ever this past summer in August I had to go to the hospital because I was so sick I could barely walk and breathe, and it made me recover in a week which was the fastest I ever have. I don't want to get into the habit of taking it too much, but I was working 7 days a week at the time so it was a lifesaver. I hope you get better and if you ever have questions let me know :)
Try the tart cherry chewables, lots of pfapa patience had good results with that and a higher dosis of vitamin D is mandatory. 1000iu is not enough. All the best for you xx
thank you for your help! I already take vitamin d but I will up the dosage :)
Also little update for anyone interested!!
-I am able to kiss people now without getting sick (if i kiss someone new i normally go home and take extra immune supplements and gargle well with listerine)
-i am able to take more tylenol and advil (extra strength) without getting side effects
-i can also drink out of someones cup but same thing I just take extra immune supplements just in case !
Thank you for sharing your story. ❤️ My daughter started showing symptoms at 1. By the time she was 2 we finally had a diagnosis. Her episodes were really bad and I was scared to give her steroids, since she was so little. At 2 1/2 I opted for her to have surgery. She still has an episode here and there but NOTHING like before. If she does get a fever it’s maybe for 2 days instead of her usual 5.
I was wondering what options were available for you when you were a child? Did you have surgery as well?
yeah the joint pain is insane especially at night laying down
I know! The pain I get from it is insane sometimes. I take fistfulls of advil and tylenol somedays.
HOLD THE PHONE!!! you got it also? I was diagnosed when I was born and still have it to this day......
Great job! Thank you for sharing! My 10 yro son is P-FAPA. First of all, I'm sorry you're dealing with this. So did you say you have a weak immune system now? Do you still have flare ups or did those subside at age 11? Did you ever receive chiro treatments from you Dad and if so, did that help relieve symptoms?
Yes chiro treatments from my dad helps so much! Some nights I would wake up and not be able to breathe, he would adjust me, and it would help me fall asleep. I would definitely recommend. Also, I would suggest to your son to start taking probiotics now if he can. I have stomach problems like bad acid reflux and I'm scared I will get a ulcer at some point from all of the pain medication I have taken. It really helps me and I'm in university now and I've been doing a lot of reading about how the health of your gut (gut microbia) plays a big role in the health of your immune system. When I was 11, the consistent episodes that happened for 1 week every month stopped. Now, I get flare ups for typically a few months a year randomly. The doctors said with most patients it stops after puberty, but they are now discovering that some patients continue to have episodes later in life, and some people can even develop P-FAPA in adulthood. If you ever have any questions feel free to message me! I have done lots of research and theres not a lot out there.
@@maddiesilvester8230 thank you!!! I’m sorry I didn’t see this sooner and reply. I’m not good w TH-cam . He started taking a high-quality pre and probiotic. Appreciate the recommendations.
@@nikkirwest I take a probiotic everyday and whenever I get my episodes I get prescribed prednisone and typically an antibiotic as well and it makes the episodes last not as long. Also, I would recommend he take an omega 3 supplement everyday! I'm in a pre-med nutrition course and I've learned a lot about its health benefits and I've started taking that everyday as well :) hope he is doing well!
Ive had recurring tonsilitis, horrible painful infections in my throat since i was about 5. Im 23 and just now a doctor suggested that i might have pfapa. I had white mouth sores when i was a child, but don't have them often anymore. My fevers while I'm sick don't rise very high either anymore. But the tonsil infections and swelling of the lymph nodes keep happening every month-two months, so PFAPA is on the table... How do you get a clear diagnosis of this disease? Thank you so much for this video! ❤️ Im really so tired of being sick and in pain so frequently, this makes me feel like im not alone
Hi there! So sorry to hear, I know how difficult it is living with P-FAPA. I was diagnosed at Sick Kids hospital in Toronto after about a decade of tests since I was a baby. They first thought I had leukaemia and a bunch of other different diseases for years. I started testing when I was less than 1 year old, and I was diagnosed when I was 11. I would suggest trying to go to a specialist through your family doc. Any family doc I've ever spoken to hasn't heard of P-FAPA so I would suggest trying to see someone who specializes in auto-immune disorders.
Thanks for the tips! Just took my first dose of predisone today. Hopefully it works! From what I see online, the doctor might have prescribed me too small of an amount. Is it OK to ask how many miligrams you take when a Pfapa episode starts? what doesage in your experience is most affective? Thanks again from this video! Made me feel not alone in this, and its good to have online buddies to consult with. In my country there isn't much knowledge about this syndrome so I have to find answers on my own
Hello Maddie. Can you make subtitles available on your video? We belong to a French non profit that gathers all videos on each rare condition in a sort of Netflix of rare diseases (app.ewenlife.org if you are curious). A research about PFAPA has been asked by a patient. But most of our viewers do not speak English. So they need autotranslation. But the option "subtitle" has to be activated to do so. Could it be possible?
Yes I will :)
this is the only video I have made, how do I do that?
@@maddiesilvester8230 hello Maddie. Unfortunatelly since I wrote you, YouTune desactivated this feature.
Hello.. I get low grade fever in every 2-3 months, and nearly 1 week before or after the fever I get aphthous stomatitis... Is it PFAPA? Or It can be something else? I don't get high fevers... It's low grade fever all the time... please help!
Below is another article that I found really helpful for anyone wanting more updated information !
ped-rheum.biomedcentral.com/articles/10.1186/s12969-016-0101-9