... inches by 4 that i have had for 3 years but i am worried about using it as there is a risk of getting certain types of cancer from it.it also says that you should not use it if you have open wounds. well mine is an open wound so why do they keep on trying to get me to use it
4 Jul 2011
I, also have pyoderma gangrenosum and at one point have as many as 27 leisions. I began treatment with high doses of prednisone,(i am now down to 60mg) ,methotexate,dapsone and have been doing remicade infusions for about 6-7 months. in hopes i will go in remission, do to the prednisone- i now have high blooded pressure were i take atenolol 50mg per day. if i lower my predisone, lesions begin to appear. no ,matter how small- they are exrtremmely painful. from the inside out. unfortunately, everytme I try and lower prednisone-they come back. alao due to prednisone (or i assumed so-it could b the remicade-i have high blood sugar. at one point taking 4 insulin shots a day. now i controll with diet (i hope) I do beleive this at this time is the only course of action (remicade) thay recently up dosage after seeing lesions on my hand. hang in there I faith in remicade or just wishful thinking, i have been dealing with this since-god knows forever-being missed diagnosed for many years.
finally treated properly for over a year. not to say that i don;t have horrible side effects-hair thinning one of them-small price to pay for being pain free-don't know whaT youve tried but maybe a lo dose prednison will get rid of that leision. if i don't take it i get them--pluss excuse my profession mannner- bu i just feel like poo. I will say the first day or so I don't feel so hot after renmicade but a few days layer I actually have energy-fleeting but hopful
I hope o heat from you about your pyro,when, where, why?
21 Sep 2011
I can't believe you have had the same sore for 3 years! I am sorry to hear that. (I hope you have a good dermatologist experienced in PG) My 1st round of PG in Jan. I had 8 sores, 2 really bad ones on my leg. I was on Prednisone & Cyclosporine for 5 mos & have healed nicely (with scars though) My problem is that I also have ulcerative colitis & that is what is causing the PG. If you have any autoimune diseases you are prone to PG. I also have RA. After 1 month being off all meds the sores came back & I am now on my 3rd bout. My doc recommends Remicade so I will begin that treatment in 3 weeks. Still waiting for some test results. He says there is success with this. He also said Humira is good.
8 Nov 2011
Dear Dollnice -
If I can offer you any hope here - I'd like to. I've had an open Pyoderma Gangrenosum Ulcer for what will be two years come Christmas. In the past month and a half I have begun scabbing over. Not the best scab in the world... (like we got as kids when you skin your knee - those were strong) this is flimsier in it's fiber (fibrin) makeup. So a week ago last Wednesday I had my third infusion of Remicade. My infusion and the afternoon of it were okay... but I wasn't feeling very good. Thursday I was sick. Didn't know what with. Really don't think Remicade caused it. Don't know.
A very high fever followed. Got to 104 degrees but "flu like symptoms" are possible. Who knows where exactly to say "when"? On that following Tuesday I was hospitalized with pneumonia. Inside of three hours they knocked it back with IV Zithromax and Ceftin and some prednisone to bring down the irritation in the lungs. Something of a curiosity - the pneumonia was not a coughing, sneezing, culmination to a cold... just a very solid chest and back pain. My pulseOx stayed high. Maybe a month before this happened I had a baseline immunity study and my "IGG" numbers were down so that night I was tested for my toleration to Gama Globulin and it was injected. Turned me around and all fever was gone. Still a core issue to be taken care of.
Something remained to be dealt with. My leg wound - the ulcer - scabbed over but had no dressing. My leg pain from the half dollar size wound is intense. I take Gabapentin to block the neural pathway of the pain but it still feels like a continuous burning with stabs... Always very sensitive.
I want people to know that my surgeon put on his examining gloves and grabbed the scab - attempting to pull the scab off the wound - after all this time. Said that it wasn't solid enough. Said that he'd take it off and replace it with HydraGel. Isn't that a step backward? It really hurt and he quit. Next day he was coming back to remove the scab. No time was set but around dinnertime he appeared at my room and started to simply grab it again. I asked that he please get me numb so that it wouldn't hurt me so much. "That will hurt more than just pulling it off" he said. I said that I wanted to be numb so I'd take my chances. He belittled me in front of another Doc, a nurse, hospital roommate and his family saying "OH - He'll take his Chances !!! all making fun of me. Then he quickly says "We're done for today" and literally ran away from my room. We are talking a sick pup here. The moral of the story is that despite the barbaric bedside manor... that scab is connected to the tissue over my PG Ulcer. It hurts a lot but sincerely seems to be healing pretty well. Heck of a way to test.
I am following up by finding a new general surgeon this afternoon that will hopefully realize that I can hurt just like he can and will treat me like a human being - with normal consideration. The treatment I received was a setback but some people are best with their patients under deep anesthesia.
My PG meanwhile continues to heal. I needed to get that incident off my chest and it is something that shocked the heck out of me. I wish you healing. I've never written here before and hope that everyone notices that a wound leveled off and moved toward scab while in the vicinity of third infusion. Generally my side effects have only been fatigue - especially in that week following infusion.
- Remicade Information for Consumers
- Remicade Information for Healthcare Professionals (includes dosage details)
- Side Effects of Remicade (detailed)
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