Needing some moral support dealing with pyoderma gangrenosum

Hi The last 4 years i have pg right now I'm having a flare. I got probally around 20 ulcers on my legs and feet anywere from the size of a pencil eraser to the size of can of chew. I have one on my right foot just at the base of my third toe and you can see tendons. I've been doing wet to dry gauze wraps twice daily to get rid of the dead skin and junk. The pain is horrible they gave me percocet 5/325 three times daily wich to me ain't enough. I can't even walk to the bathrooms without being in tears. I'm at the end of my rope the docotors don't seem to belive me about the pain then you get looked at like a junkie if you ask for someting for the pain.

I dealt with PG and MRSA several years ago. I spent months with oozing large sores on my legs. It took many many rounds of antibiotics to finally clear up my legs. I am left with 17 scars on my legs. I have never considered myself a vain person but, I am so embarrassed of my legs. I can't/won't wear shorts or a bathing suit. This disease has taken my dignity at so many levels.

PG is a condition you can have on its own or in rare cases it is related to Crohns. I won't even try to spell it, maybe one of the others who suffer with it can do a better job than I. But don't start freaking that you are going to get it, as it is fairly rare. Hugs!

    pyoderma gangrenosum........sucks to have

I got what appeared to be tick bites, even bullet rash in April, 2011. within a week (started on doxy that day) they were turning necrotic. after a week of elevating legs, dr sent me to derm dr, who thought it was pg but so rare sent me to ny city for biopsy. labs inconclusive but both docs said their opinion was pg. started steroids and cyclosporine, in September started going to wound care center as would not heal, had good results, wounds closed, dark discoloration . weaned off meds totally in November and was cleared of underlying diseases. here it is 10 months later, still have pain in leg, burning aching pain, scar sites feel tender and bruisy to touch, they do appear to be reducing in size, notice when allergic responses are active (ragweed, pollen) pain increases. have continuing malaise, weakness. Swimming all summer and lots of sun have helped. summer over feeling depressed. only taking naproxen sodium for pain and of course allergy meds. benadryl at night is only way to sleep. found topical ice packs help on sites. I feel like a loser, can't get energy or strength some days. on days I do feel good, cuz if I overdo I pay dearly the next day. I am only 51. next month is my physical I'm bringing all this to my dr, she does not like pain meds, I only like them when it gets overwhelming, my family is very supportive, they say I'm 'knitting', WHEN will it stop ? [img]

you poor thing, can you put icepack on it I find that helpful

please contact dr Guthrie at hudson valley hospital center, wound care center 914-737-9000. I went to them and my ulcers responded to treatment and were closed after 6 months. they used a variety of therapies but were in agreement debridements would NOT work as that increased the gangrenous activity. they medicated, cleaned and compressed the ulcers until we finally had wound coverage with new skin.
I empathize with you the pain is horrible. be careful of those drugs, they will make you addicted.
my wound closed in November of 2011, yet I still have the discoloration and scarring. anytime my immune system is attacked, cold, flu etcetera the pain is miserable. I put an ice bag on the area and take naproxen sodium. staying on a vitamin regimen helps, plent of d, calcium, magnesium all help.
so here I am almost 2 years after the initial infection, getting better, I still have some bed days. when your body says rest you have to, no further ulcers. i pray for you this is one messed up disease. call the doctor tell him Jackie with pyoderma gangrenosum cas closed November 2011.
keep me posted, your life can get better!!!

Romans 8:18

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

Hello All PG´ers,

my heart goes out to you. This is such a horrible illness and a very painful one.

I am also hitting my 2nd year mark next year, very frustrating.

I have spend hundreds of pounds on alternative medicine, healing (listened a lot to Louise Hay, bless her), reike, homeopathy, acupuncture, you name it, and also tried all sorts of different home remidies: Macura Honey, Aloe Vera, seaweed, cabbage (!) - all to no avail :(.

Medicine wise, I was put on Prednisolone the first time. Wow that was quite an experience. Craved meat like crazy (used to be vegetarian), gained 25 Kilos ) (10 kg in only one week), did not recognise myself anymore, neither physically nor psychologically, had insomnia...really really bad. The steroids worked at first, but then all of a sudden stopped working.

When my doc told me I will have to taper the dosis for the next 6 months (was on a super-high dosis) I thought I will faint. I did my own tapering which worked extremely well. I know one should not do this but there was no way I was going to take them for another 6 months. I tapered for one month. Felt okay and have no side effects at all.

I also did some days of juicing which made me lose quite a lot of weight. Still have to lose 10 kilos, but I will get there. Still have the very feared prednisolone belly but it is getting better.

Steroids are EVIL!!

Anyway, I still had the PG on my inner left ankle. I was assigned to a resesarch group that deals with PG and I have to say they are super helpful. After refusing to take any more Steroids they gave me a different medicine. I cannot remember the name but it was some immune suppressant, like Cyclosporine (?)....something like that.

It worked EXTREMELY well, the ulcer was almost healed :). The "only" side effect I had was hair loss. When I ran out of the medicine I asked my GP to prescribe me some more. She didn`t, because my kidney results were bad. By the time I got another appointment with the hospital (wiht my study group) a month later my ulcer had flared again and almost tripled (!) in size and leaving it really messy, runny, absolutely disgusting. Basically it is so runny that I have to change bandage twice a day now and put tissues in my socks because from all the walking all the puss and stuff is oozing out. I have never been so disgusted at myself as now.

Anyway, got another new medicine called Myfenax, which I started a week ago. So far NOTHING has improved. Does anyone know about this medicine?

Honestly, I am 45 now, have been healthy all my life until two years ago, when I hit my ankle with a plug when I unplugged the iron. A small scratch that did not heal, was prescribed an ointment that did not work at all but caused an ulcer of about 4 x 4 cm literally over night!

Unbelievable.

How do you guys get moral support? How do you manage it day by day? Walking is so painful, I have totally lost interest in going out and meeting people. I used to consider myself pretty (without sounding vain, please don t get me wrong) but now I feel liek an overweight, ugly old woman who has no life.

I want my life back :(

I am 65 years old, live in Western Australia and was diagnosed with Ulcerative Colitis some 6 years ago.  Medication (mesalazine) kept it under control and I continued to lead a very active life.  Early in 2010 I felt ill, no real symptoms, just feeling really rotten.  I could not work out what the matter was.  Anyway, in August 2010 my GP took blood tests and found that my inflammation levels were sky high.  Into hospital where my gastro tried to do a colonoscopy but found that my rectum was an "ulcerated, bleeding, ***** mess".  They put me on IV antibiotics and I was in hospital for 2 weeks.  Then they said go home and get your self healthy ready for surgery later in the year.  I was back in with 2 weeks, nearly dead.  Emergency surgery removed the Sigmoid colon and revealed that I had a perforated bowel.  So I now have a colostomy bag to deal with.  The initial incision line took 3 months to heal up.  The infection from having colonic fluid in the abdominal cavity darned near carried me off.  Then I developed a little blister just below the stoma, about an inch and a half away.  By the time it was diagnosed as pyoderma gangrenosum it was big, purple, very painful and growing.  So onto prednisolone, and topical dressing with Eluephrat ointment.  Did not heal.  Got cellulitis and lost all the skin across the left side of my tummy, back into hospital for 3 and a half weeks to heal that up.  Then the fun and games with pyodera began.  The ulcer did start to heal but it was terribly slowly and by this time it had grown right up to the stoma so that I had very little competent skin to stick the bag to.  It got smaller and I could see the end in sight but in August 2012 it had begun to grow again and the dermatologists at the hospital put me onto Infliximab.  I have been on Cyclosporin, Azathioprine, Prednisolone.  I also had injection of steroid around the active rim of the ulcer and that seemed to be working, but I developed an abcess in the floor of the ulcer so they stopped doing those.  Currently I have two ulcers, right up to the stoma, so that I have about half the skin around the stoma to stick the bag to.  I use Eluephrat steroid ointment, Aquacell absorbent dressing, covered with a Coloplast flexible adhesive waterproof dressing that the bag will stick to.  I use stoma paste, stoma powder and Coloplast Brava adhesive tapes to hold the bag securely in place.  I still get faeces into the ulcer, which sometimes I do not feel and sometimes it hurts like hell and I have to go and change the bag and dressing.  There is no bacterial infection, just the pyoderma.  I am due to have another Infliximab infusion on 26 of this month but after that I do not think the dermatology department will go on with this very expensive treatment as the ulcer is not healing.  Not growing rapidly just now, but not healing.  What the hell am I going to do?  I feel really desperate about this.  Has anybody actually healed pyoderma?  If so what did you use?  I do not have a lot of faith in the doctors as they do a Monday to Friday job but for me it is my life affected here.  I am seeing a dietitian, and a chiropracter.  Who else can help?

Hi kimmy I have just been told I have Pyoderma Gangrenosum had it for 7weeks now and I totally understand ur pain, im also fasturated I was healing really well on prednisone and last night had a set back had sharp pain in the wound and heat coming thru the dressing I had a look the redness and pus is baack worse I have to go back to the hospital later today im currently waiting for a colonscopy to be done to rule out anyother illnesses I have I am 29yrs old mum of 4 and don't know why I got this I have 7 wounds on one leg and I haven't found anyone with the same thing az me. but I hope you are ok and starting to heal.