In 2008, I suffered from PG and the experience is unforgettable. Any small scratch below my knees would cause eruptions on both legs that would last months to heal. In 2014 I had the last episode of the condition and now live with the ugly scars on my legs. I can't walk around in shorts like I used to. Whenever I go to the swimming pool I get stares that suggest "that must have been so painful". Currently I need help with managing the scars. I lost the hair follicles on the affected parts and the scars are kind of scaly.
@@2geniusworldlive I was on high doses of systemic corticosteroids, antihistamines and antibiotics. These were prescribed by a consultant dermatologist. To prevent recurrent episodes I make sure that I don't get any injury on my legs. I am cautious about my surrounding as I move about. I wear thick socks to cover my legs from any injuries. The last episode I had was when I accidentally knocked my sheen bone against a coffee stool.
I’ve had PG for 25 years since I was 17 way back in 1997. It’s blooming hurts lots. Over the years it’s had good/quiet phases others not so good. At times (including at the moment) I’ve had ulcer/wounds that are 40cm long, 15cm wide, in parts 4-5cm deep. I’m bed bound unable to walk or move much because of the pain. Have been on several immunosuppressants over the years they work at first but then my body develops a resistance to it after a few years. It’s just a case of hurry up and wait for the wounds to heal. They will get there. Wishing everyone well and sending healing and posture vibes to you all.
Thank you soo much... I have cried the whole video. So recognizable.... I was , being duthc but living since 2016 in Thailand) diagnosed nov 2022 and now, after 8 month almost healed (2 months they think more) of 2 PG ulcers. Life has been very bad for me till a week ago when finally the pain disappeared. They have tried many types of drugs and injections, many of them very expensive. Cyclosporine was the worsed of all, my body collapse after getting seizures of high bloodpressure, high temperature and very much sweating. 2 weeks I took those pills and it took me another 4 weeks to recover a bit from these side-effects. Although I have a very good dermotologist, and also wound care was good, she did not understand the mental effects of this and did not support me with that other then heavy painkiller like methadon , morfine and oxicodine. But there is now light at the tunnel, and I am on Prednisone for the rest of the treatment. Yes sleeplessness and some other sideeffects, but life is good for me again. I wish I would have seen this vid before. Hopefully you are able to spread the word , I will send a link to my dermotolgist anyway, and help others going through this black period.
I've had PG about 6 different times on my abdomen. At one point I was on 96mg of hydromorphone (quick acting). The worst that I had it was when it surrounded my stoma and across my entire abdomen. Specialist in PG at a hospital had never seen it that bad. I agree that the pain is debilitating. I have PG again right now and Pain again is the worst. I don't know how to convey how painful it is to my doctor's.
Jennifer have you joined the Facebook group Pyoderma Gangrenosum? It's been extremely useful and encouraging to share with people who have the same rare disease.
In order to heal my PG, I was giving steroid injections directly in the wound along with oral prednisone. I was also prescribed Stelara. This combination is what helped put my PG into remission.
Newly diagnosed here with PG. How many mg of prednisone did you take? I was given 40mg in the hospital but they didn't prescribe it to me when I was discharged. I just had my first shots of steroids a week ago. My dermatologist also prescribed Cromolyn eyedrops to be put on my wound 2X a day.
Is there now a treatment for this rare condition. My sister is from the phils and I agree with you that this causes so much pain on the patient. Besides it is affecting emotionally financially as well as we have to go weekly for a woundcare treatment on top of a daily housecare wound care treatment
It is your sister in the Philippines who has PG and now going for wound care treatments? How long has she been getting the treatments? What type of treatments is she getting? Is her wound getting better? So sorry to hear this. I was just newly diagnosed with PG and has been getting wound care for a month now. It's only by God's grace I'm able to get through each day. I take it one day at a time. I got my steroid injections last week. My husband and I are planning to move to the Philippines but this might be put on hold until my wound is fully healed. If I ended up with one in the Philippines, I hope the hospitals or clinics there are able to give me the right treatment.
The pain is similar to a million devil's ripping away at your flesh.
This is very true. At night I used to use painkillers like Tramadol just to relieve the pain as I go to sleep.
Wow… I’ve living through hell with PG now and it’s the worst pain ever 🥺😭
I am so sorry about your condition.
I am too. It's unbearable.
It’s amazing to find someone that really understands the pain.
In 2008, I suffered from PG and the experience is unforgettable. Any small scratch below my knees would cause eruptions on both legs that would last months to heal. In 2014 I had the last episode of the condition and now live with the ugly scars on my legs. I can't walk around in shorts like I used to. Whenever I go to the swimming pool I get stares that suggest "that must have been so painful". Currently I need help with managing the scars. I lost the hair follicles on the affected parts and the scars are kind of scaly.
I'm keeping you in my prayers
My mom is suffering from this. What did you do to recover or prevent the episodes from reoccurring?
@@2geniusworldlive I was on high doses of systemic corticosteroids, antihistamines and antibiotics. These were prescribed by a consultant dermatologist. To prevent recurrent episodes I make sure that I don't get any injury on my legs. I am cautious about my surrounding as I move about. I wear thick socks to cover my legs from any injuries. The last episode I had was when I accidentally knocked my sheen bone against a coffee stool.
I’ve had PG for 25 years since I was 17 way back in 1997. It’s blooming hurts lots. Over the years it’s had good/quiet phases others not so good. At times (including at the moment) I’ve had ulcer/wounds that are 40cm long, 15cm wide, in parts 4-5cm deep. I’m bed bound unable to walk or move much because of the pain. Have been on several immunosuppressants over the years they work at first but then my body develops a resistance to it after a few years. It’s just a case of hurry up and wait for the wounds to heal. They will get there. Wishing everyone well and sending healing and posture vibes to you all.
I’m living threw it right now.
Thank you soo much... I have cried the whole video. So recognizable.... I was , being duthc but living since 2016 in Thailand) diagnosed nov 2022 and now, after 8 month almost healed (2 months they think more) of 2 PG ulcers. Life has been very bad for me till a week ago when finally the pain disappeared. They have tried many types of drugs and injections, many of them very expensive. Cyclosporine was the worsed of all, my body collapse after getting seizures of high bloodpressure, high temperature and very much sweating. 2 weeks I took those pills and it took me another 4 weeks to recover a bit from these side-effects. Although I have a very good dermotologist, and also wound care was good, she did not understand the mental effects of this and did not support me with that other then heavy painkiller like methadon , morfine and oxicodine. But there is now light at the tunnel, and I am on Prednisone for the rest of the treatment. Yes sleeplessness and some other sideeffects, but life is good for me again. I wish I would have seen this vid before. Hopefully you are able to spread the word , I will send a link to my dermotolgist anyway, and help others going through this black period.
I have PG after having a c-section at 28 weeks pregnant worse pain ever, plz tell me the pain goes away it’s on my stomach
I've had PG about 6 different times on my abdomen. At one point I was on 96mg of hydromorphone (quick acting). The worst that I had it was when it surrounded my stoma and across my entire abdomen. Specialist in PG at a hospital had never seen it that bad. I agree that the pain is debilitating. I have PG again right now and Pain again is the worst. I don't know how to convey how painful it is to my doctor's.
I wish I could find someone to care enough to help my mama.. she has pg and now a load of other issues 😔 it has taken over her life
Jennifer have you joined the Facebook group Pyoderma Gangrenosum? It's been extremely useful and encouraging to share with people who have the same rare disease.
In order to heal my PG, I was giving steroid injections directly in the wound along with oral prednisone. I was also prescribed Stelara. This combination is what helped put my PG into remission.
Newly diagnosed here with PG. How many mg of prednisone did you take? I was given 40mg in the hospital but they didn't prescribe it to me when I was discharged. I just had my first shots of steroids a week ago. My dermatologist also prescribed Cromolyn eyedrops to be put on my wound 2X a day.
Is there now a treatment for this rare condition. My sister is from the phils and I agree with you that this causes so much pain on the patient. Besides it is affecting emotionally financially as well as we have to go weekly for a woundcare treatment on top of a daily housecare wound care treatment
It is your sister in the Philippines who has PG and now going for wound care treatments? How long has she been getting the treatments? What type of treatments is she getting? Is her wound getting better? So sorry to hear this. I was just newly diagnosed with PG and has been getting wound care for a month now. It's only by God's grace I'm able to get through each day. I take it one day at a time. I got my steroid injections last week. My husband and I are planning to move to the Philippines but this might be put on hold until my wound is fully healed. If I ended up with one in the Philippines, I hope the hospitals or clinics there are able to give me the right treatment.
@@MW-si5er Hi! My sister passed away last may 14 (mothers day) as she developed an auto immune disease apart from pg.