HealingWell
Search Close Search
☰

Pyoderma Gangrenosum anyone??

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/4/2017 1:19 AM (GMT 0)
Hi:
Over Easter break I developed some weird "pimples" that turned into ecthyma. Unfortunately since it was break, i didn't get them looked at till they had progressed. Dermatologyst put me on antibiotics. A few days later infused them with antibiotics.

My GI saw them and decided to proceed with my Entyvio infusion anyway. I'm not sure if that was a good idea. She also added Azathioprine and Alluprinol, which i'm afraid to start taking, as they may inhibit healing.

Two weeks later they are gaping open sores, like out of a horror movie. Today she infused them again, changed antibiotics, and took biopsies. She's almost certain they've evolved into Pyoderma's, my body is now basically destroying the healthy cells, and not allowing them to heal.

I'm so discouraged by all this. They are very painful, horrible to look at, and not going anywhere.

I'm concerned my Dr isn't being aggressive enough with her treatment. I know they are mostly associated with Crohns, but has any UC'ers had them?

Any thoughts, suggestions?
Posted 5/4/2017 5:50 PM (GMT 0)
Hi....there have been a few with it, but I don't remember whom. It's not more common with CD over UC I don't think...can happen with other autoimmune diseases or alone.

I wouldn't think having the entyvio will hinder healing since PG is autoimmune.
It's good biopsies were taken....there are many skin disorders that mimic each other.

I'm wondering if laser treatments can help with healing.

Huge hugs to you.....please keep us updated on how youre doing and the results of the biopsies.

q
Posted 5/5/2017 12:31 AM (GMT 0)
Thanks Q:
Amazingly enough, despite the antibiotics I'm now on, I feel like the Entyvio has FINALLY started to kick in. I'm doing so, so much better from the UC than I was 10 days ago.

Praise God! At least something in my body is getting resolved.

I will post an update tomorrow and thanks for the hugs. This forum means so much to me
Posted 5/5/2017 1:30 AM (GMT 0)
GG -- so glad to hear entyvio is working g for you! I think its working for me too. Had my 3rd infusion last week. Have some very minor symptoms this week but nothing g too worrisome. I'm only a month into it since they mis-scheduled my 3rd loading dose. I have my4th infusion in7 weeks. Are you having headaches? Have had one every other day the last week. Still better than tenesnus and cramping tho!
Posted 5/5/2017 5:05 AM (GMT 0)
Great to hear you're feeling much better since the last infusion.
q
Posted 5/11/2017 10:07 PM (GMT 0)
So all hell is breaking loose here.

PG is growing each day. Dr's in Guatemala seem to be at a loss. The dermatologist says to do 2 days of IV steroids, and increase my prednisone drastically, but he's concerned we won't be treating the underlying cause.

The colitis is so much better, it would be a shame to have to go off the Entyvio. However, logic says that if Entyvio was going to cure the PG I would not be getting sicker.

Dr in US says to try Stelara, but is very cryptic.

Meanwhile, the pain is unbearable and I feel so lost.
Posted 5/12/2017 3:11 AM (GMT 0)
I am so sorry to read this, it sounds so horrible. I am sorry too that I have nothing helpful to add.
Posted 5/12/2017 2:43 PM (GMT 0)
The underlyimg cause is having autoimmune disease. Unless, you have something else.
Did he take biopsies ? I would definitely suggest that.

Are you being cared for by a wound specialist?
Is it possible for you to see a specialist maybe in another country?

Huge hugs,
q
Posted 5/12/2017 3:20 PM (GMT 0)
Are you still on the steroids? I agree with q, biopsies or cultures maybe. Entyvio probably wouldn't have any impact on it either way I wouldn't think. it's gut specific. Sounds awful though, I really hope you are feeling better quickly.
Posted 5/12/2017 9:55 PM (GMT 0)
I agree with Q--they should take biopsies. Those skin things look so similiar and if it isn't getting better despite treatment, it may be possible that they are treating the wrong thing. I also want to add that Entyvio is gut specific so in theory it shouldn't upset any other body system. I wouldn't go off of it if it is working. I hope you feel better and let us know how you are doing.
B
Posted 5/13/2017 7:07 PM (GMT 0)
i am traveling back to the US tomorrow to see if I can see a specialist. Begging for an appointment.

Biopsies were taken, it's def PG.

UC dr wants to get me on Stelara asap, praying that my insurance will cover it.

My main concern now is that I feel truly terrible. Dizzy, weak, etc. The pain is unbearable. I think meds are interacting w each other, no one is looking at the whole picture. I am very scared.
Posted 5/14/2017 1:27 PM (GMT 0)
So sorry Guategirl. I hope that the Dr's can put this whole picture together so you can feel better. If you suspect the meds are interacting--can you talk to a pharmacist? I find they know more about the meds and maybe they can help shed some light. Just a thought. I hope you feel better and let us know how you are doing
B
Posted 5/14/2017 3:02 PM (GMT 0)
Please let us know the outcome from your travel to the US. I hope the stelara will be covered....since you do have confirmed diagnosis of PG, it would seem in your favour to try another med to control it.

I'm not clear on what med conflict are causing your dizziness and weakness...are you on pred, Az and allopurinol now as well?

It's heartbreaking to hear you're going through this.
Hugs,
q
Posted 5/14/2017 5:52 PM (GMT 0)
Dang! So sorry you are so miserable! I hope you find someone in the us to help you! Please keep us updated!
Posted 5/15/2017 4:15 PM (GMT 0)
From Sept 2007 until Jan 2010 I suffered with terrible PG. I had an 18 cm hole in my leg and 2 very large lesions on my other, At one point you could see the bone. I almost died.

I tried every treatment. Nothing worked until I tried IVIG. (immuno gloublin ) Do a google. It saved my life, literally and put my UC in remission for 3 years. But sadly, I now have fistulating crohns and it's likely you have CD too.

I'm imploring you to get on IVIG. Granulation will occur in 2 weeks. You also need proper bandage changes and cleaning by a nurse. Id suggest collidial silver dressings or even manuka honey ones. IT's extremely painful and it spreads rapidly. (I had a bump that I thought was a mosquito bite and within a week I was in hospital with a hole that kept getting bigger).

You could also try tacrilimous (spelling?) ointment. Use it liberally.


Please get on IVIG!! If you need help, please post me. If needed my GI can talk to yours about it.

I'm sorry you're going through this.

Post Edited (U B Tough) : 5/15/2017 10:28:32 AM (GMT-6)

Posted 6/16/2017 10:45 PM (GMT 0)
Thank you all for your posts and concerns. Thank you U B!

Turns out the Dapson I was on for the pg caused methemoglobinemia (blood can't carry oxygen)- that was what was making me feel so miserable. Basically I was going brain dead from lack of oxygen, but since the the dose was so low and increased so slowly I didn't realize what was happening. Everything the derm did in Guatemala was the opposite of how pg should be treated.

Within 12 hours of setting foot in the good ol' US of A my UC Dr admitted me to the hospital where they first treated the methemoglobinemia and then focused on the pg. The Dermatologist I was assigned has extensive experience treating it - as a matter of fact had other patients hospitalized as well.

I was treated with high doses of prednisolone, 3 antibiotics and cyclosporine. All IV. Was in hospital for a week. Within 2 days the large lesion had stopped growing and by the end of the week it was looking healthy.

Now they are sloooowwwwllllyyyy healing - and no longer that painful. I can manage the pain.

On the upside the uc is under control w the combo - I can eat WHATEVER I WANT, and DRINK COFFEE - first time in a year!! Better believe I'm taking advantage. I have no idea how long this will last.

All in all it was HORRENDOUS, scary, expensive, but I'm glad the dapson caused so much drama because w/o it I would have never traveled to the US to seek better treatment and would probably have lost my breast by now.

I have literally been catching up w my life and work for the past 3 weeks since I got back.

I am thankful to God for the way everything worked out. Thanks for reading!
Posted 6/17/2017 1:35 AM (GMT 0)
Glad you got fixed and are doing so well! Does this mean you can't take Entyvio?

Interesting that the antibiotics have put you in remission. Lends a lot of credence to the theory of UC being caused by an unidentified pathogen. If only they could figure it out. But then i guess antibiotics don't cure everyone, either.
Posted 6/17/2017 3:45 PM (GMT 0)
Hi Flowers:

No more Entyvio for me. Dr has two theories as to what caused the pg:

1. Since Entyvio is gut specific the autoimmune cells looked for new ways to escape the body- they found the skin
2. The Entyvio actually caused the pg.

These are just her theories.

A third Dr said pg happened because UC is not under control. This makes the most sense to me.

But no: antibiotics didn't put me in remission, the cyclosporine/ prednisone has me in remission.

I will still need to find a new treatment once I start to taper these.... not looking forward to that
Posted 6/18/2017 3:04 AM (GMT 0)
Dang that sucks! I was hoping entyvio was going tone the ticket to remission for you. Maybe stelara? Several people here saying its been great for them and fast working too
Posted 6/20/2017 6:20 PM (GMT 0)
Guategirl

Did stopping entyvio help your PG and reduce it?
Posted 6/21/2017 6:07 PM (GMT 0)
What a relief you're back in the US with treatment that has you improving!

Scary situation regarding methemoglobinemia....and the connection to Entyvio.
Again...a huge relief you went back to the US!!!

Hugs,
q
✚ New Topic ✚ Reply