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Dealing with Pyoderma Gangrenosum! PART III

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Posted 7/17/2009 11:27 PM (GMT 0)
There are a lot of restaurants close to Tacoma that we could meet at for lunch, if that would work for you and Penny. I could do Monday.

Jan

Posted 7/17/2009 11:27 PM (GMT 0)
I meant to say Tacoma Mall!!  Right off the freeway.

Posted 7/18/2009 12:43 AM (GMT 0)
Willow,

Monday will be fine with me ....just let me know the plans :)
Posted 7/18/2009 1:00 AM (GMT 0)
Hi all-

Jan-- The mall would be great!  I've never been there but am sure I can find it. I have a very competent GPS that I rely on to find my way to my mailbox:)   What enterance would you suggest we meet?  Penny will this work for you?  What is a good time?  My husband has kindly offered to take care of the kids.  I can go at anytime:) I so hope this will work out!  I can also do Wed but it would have to be early.  I need to be back in Redmond by 2:00.

Miss Camper--  I feel silly but, what is SSKI?  It sounds like something that requires a 10 day course of antibiotics! HA!

Gotta make dinner

Peace--Willow

Posted 7/18/2009 1:56 AM (GMT 0)
Willow-
Iam VERY concerned about the 80 mg of Pred. Especially when u said u are now taking BP meds. I am afraid the side effects might get worse, adrenals, diabetes, etc., Maybe talk to another doc.

Going to Alaska!!! Where in AK? I used to live there- 25 yrs. Are u going fishing?
It is beautiful country, I miss it very much.

I have three chickens myself!

As far as APS, if you have had miscarriages or blood clots, I would definitely check into it.

I have a real hard time with PG not having a cause, diagnosis by elimination.

I keep culture swabs on hand. If my ulcers start smelling too much, I swab it myself & drop it off to the docs. No need for appts. :-0
Posted 7/18/2009 2:36 AM (GMT 0)
SSKI is potassium iodine.  Believe it or not, I was on these several years back for erythema nodosum.  Wierd.  Goggle it and see what you learn.  Too much info to pass along here.  Can't wait to hear all about your lunch on Monday - wish I could be there, sounds like fun.  Warmly, Miss Camper cool

P.S. Willow,  I never get anything simple that requires a 10 day course of antibotic....nope, not me, I had an infection in my scalp for eight years that I was taking antibiotics for EIGHT YEARS!   

Post Edited (MissCamper) : 7/17/2009 8:41:18 PM (GMT-6)

Posted 7/18/2009 3:29 AM (GMT 0)
Hey-

Miss Camper--sounds like you have been through it and then dragged back through it a number of times!  I'm so sorry:(  Out of curiosity, have you ever had low magnesium or potassium levels?  How about yeast?  My hubby has a scalp condition that put him on a similar chronic path of antibiotics. He was on them daily for 10 years.  He had enough yeast in him to open his own bakery! He gifted it on to me!  (Special!)  I'm guessing that you are a walking "PDR- black -box -warning" by what you said about complications.  I'm sorry! I have had a number of years like that myself.  I fractured my skull  many years ago and spent almost a year in the hospital.  I had great MD's but I had one iatragenic complication after another.  I feel for you! I wish you could join us for luch as well.  I would be happy to order your favorite dessert and enjoy it for you...almost like you're there.  I promise to eat every bite in your honor:)

Norma-  I have tried to go lower on the Pred and have been unable.  I was on 125mg and did get down to 80mg.  Once I got so frusterated with all the side effects that I stopped taking it...stupid, stupid,stupid!  I went into adrenal failure.  I learned that lesson!  I also have asthma and need it for that.  I think it is keeping me alive and killing me at the same time. (I remember being in a relationship like that once!HA)  I will ask my MD about ASP.  I have had a miscarrage and 3 DVT's.  We are going on a cruise to Alaska and might do a fishing trip when we get there.  I am so looking forward to it.  My 15 year old son wants to go hunting.  I told him not this trip.  I take him turkey hunting each spring here in WA.  Funny, the things you do when you have kids!  I never thought I would go hunting but I so enjoy the time I have with just him:)  My younger son has wanted chickens since he was 5.  We moved here 3 years ago and actually bought our house with chickens in mind.  We have two girls.  I never fancied myself a farmer but have fallen in love with them.  They are a hoot!  They come when you call them and we even taught them stupid-chicken-tricks! In the evening they hang out on the deck with us! I'm guessing yours are pets with perks (Eggs!) too?

More later

Peace---Willow

Posted 7/18/2009 11:44 AM (GMT 0)
Norma3 I NEED MORE INFORMATION on your aps, I am currently being treated by a specialist
at a major medical facility in boston ma are you being treated by a major medical facility or just a your basic doctor?

When they thought it was pg what where they treating you with??And how did they give you your finaly diagnoses??MIne was a biopsy on my last huge ulcer I had gotten, Sorry for all the questions but I have been dealing with this for a while and to just be on 325mgs of aspirin a day would be huge compared to what I am on< also I have had some blue colored toes have you!??
I would greatly appreciate more information
Thanks sarah
Posted 7/18/2009 11:50 AM (GMT 0)
ALSO I had every blood test they could take and aps never showed up until I had an actual biopsy so just so every one knows you could have it?? The other interesting thing is I never have had any blood clots and I have two children no history of miscarriages. I was biopsyed on my last active ucler
Posted 7/18/2009 4:43 PM (GMT 0)
Hi All,

Hope all is well, I just wanted to drop in and say hello and wish everyone a great weekend!

Willow and Jan,

Monday sounds good, the mall is right off the highway. Moving from Oregon last year I drove right past it! :) Willow? You want to pick me up? Im off 405? Im not sure if that is our of your way or would you be going down 405? Let me know. I say we meet around noonish or so at the mall? Really up to you ladies, anything works for me.



Love,
Penny
Posted 7/18/2009 6:41 PM (GMT 0)

 Hello everyone,I finally found you all,sorry haven't been posting but I sort of got lost(didn't have anyone to ask for directions) yeah It is funny I kept checking and noticed nobody was posting(well duh "new topic started").I am fine,not on vacation yet,do plan on a trip to Myrtle Beach South Carolina for a few days in early August.You all be sure to take some time to have some fun when you have your get together,Washington State is very beautiful,have a sister who lives in Tacoma,I call her every now and then,travelled out there back in 1992.In fact it is on my "bucket list" to make a return visit out there,just don't know when.I don't have any chickens,but I do have a small garden(well sort of),last few years just grew som tomatoes,but this year got some cucumbers and tomatoes and a small pepper plant,it keeps me busy.

 Iv'e been able to stop my nightly treatments of leg wrappings with Urea 40% for now,most of the ulcers on my left leg are pretty much healed(for now),but I keep noticing small areas(purple in color) that look like starting but keeping an eye on them(mostly on my right leg),seems like an ongoing thing,little places just seem to pop up,but keeping my treatment supplies on hand just in case.Don't have an appointment with my dermatologist for a few months,just have to wait and see and if the small areas don't clear,may have to call before hand.Penny it is good to hear about your wounds shrinking and your long term disability(least it helps keep wolves away from the door),if I was you I would maybe start the SSDI process,remember about first 5-6 months is not counted.Well now since I found you all again...till next time.

 (((Hugs to all)))

 Mark

Posted 7/18/2009 7:57 PM (GMT 0)

Hi Mark,  good to see you back posting!

How nice to have improvement in your sores as to not having to do the nightly dressings. I can't wait for that to happen. Hope no new ones pop up for you.

Neat that you have a sister living out this way. When you come for another visit, be sure to look us up.

Enjoy your weekend.

Jan

Posted 7/18/2009 8:00 PM (GMT 0)

Penny,

I thought I had your e-mail address from a post of yours before, but my note to you came back to me. Would you mind posting it? If you would rather not, I can post mine. Thanks.

Jan

Posted 7/18/2009 11:54 PM (GMT 0)
Hi, Sarah, I will try to make this short & only mention the most important.
I have seen the Derm department from UCSF & UCDavis on their Grand Rounds. They all agreed it looked PG. As well other generals, endos,derms, etc., All my tests for other possibilities came back negative, so a diagnosis of exclusion.

I have been treated with:Prednisone,Minocycline,Dapsone,Cochicine,Nasalcrom,Fluocinonide. They didn't want to put me on anything stronger because of breast cancer in 2007.
After 9 months of nothing working, fired that derm.

The NEW Rheumy (less than 3 weeks ago) tested me for APS. His opinion was that if it looks like the disease, acts like the disease, but the treatments don't work for the disease then it is not the disease.

Tested positive for APS AGAIN. Funny I had tested positive for APS a little while back, but they still said it was PG. I think it is possible to be both. The APS causes the PG.

I was supposed to get knocked out & debrided, but my surgeon & the Rheumy thought it was more important to halt the progression. So I am on 325mg of aspirin for now. I am sure they will have to add another drug to control the antibodies as well as the clots.
It did halt the progression. It is slowly healing, even with all the gunk. It itches the like devil sometimes, never did that before.

I have never had a major blood clot, although I think I have had mini's in my brain-I was getting extremely forgetful, it is now a bit better. No blue toes here. What did your doc say?

Since I am a little dense, are you saying that u HAVE been dx with APS, or a re they going to test you for it? They are very specific tests. I am surprised that u didn't miscarry. Of course I am GLAD that u didn't :-]

Ask me all the questions u want, I am happy to help any way I can!!
Posted 7/19/2009 12:15 AM (GMT 0)
Mark,
I have had those little purple things too. Did the same thing. Are u taking any aspirin? Sometimes they did turn into ulcers & sometimes not. Enough to make a person rip out their hair!

Willow,
Hunting is very expensive in AK. If u are into halibut, the best place to fish is HOMER on the Kenai Peninsula. If u like salmon, in August the silvers are running. They are just about everywhere! Pixies work the best. Pinks are running too, but not as good flavor.
My chix are Digger, Muffin, & Scooter. We raised them since they were a week old. They do stupid pet tricks too! & give us delicious eggs!
Have they tried taking down like 1mg. a month or two? Twice I got very sick when they took me off it too fast, so i know dangerous it is!
Posted 7/19/2009 1:16 AM (GMT 0)
I see you all are going through so much with PG. I am surprised by the fact that how rare it is, and how hard it is to find support for, that you all were really not welcoming of a new member. One of you did acknowlege me, but that is about it.
My husband and I have been fighting this for nearly 2 years now. It has been a tremendous strain on the twon of us. He has been in and out of work 3 times. Each time fighting short term disability. He was in the hospital in June with fear of bone infection. Every time we think it is healing it comes back even quicker.
It has been a lonely battle, and I thought maybe here I would find a friend who understood what we are going through. Apparently I was wrong. You have already made your friendships.
I hope everyone heals quickly.
Good luck to you all.
Posted 7/19/2009 2:32 AM (GMT 0)
confused   confused confused confused confused confused

Kimike-

I hope I'm not too late:(  I am so sorry to have neglected you and your husband!  You are right and I am so sorry.  I got caught up in myself and own excitement over finding people who also suffered PG.  This is the first forum I have ever been on.  I know how lonely and isolated you feel.  I know how scarey it is to be diagnosed with such a rare disease that is seldom understood by most MDs.  I know the strain it has on relationships. Please don't leave!!! There is lots of room for more friends!!  Again,  I apologize to you and your husband.

Ashamed---Willow

Posted 7/19/2009 2:35 AM (GMT 0)

Kimike, I am so sorry your post wasn't answered. I find it a little difficult to catch all the posts and make an answer before another comment or two is made. Because all of our comments are made on one thread, it just seems to be harder. But believe me, we sure wouldn't intentionaly pass you up.

PG is an awful thing to deal with and I feel for you and your husband. What a shame to have been in the hospital 3 times. It is difficult enough to have to deal with PG, much less having to deal with disability too.

Please post again and ask any questions or give us more information on you both.

I wish you only the best and look forward to seeing you on here again.

Jan 

 

Posted 7/19/2009 4:41 AM (GMT 0)
welcome kimike -- did I read your posts correctly? both you and your husband have PG??
Posted 7/19/2009 6:13 AM (GMT 0)
Hi, Kimike,
I am new to this forum stuff....it says you joined in March? I didn't realize you were new.
I am confused too, both u & your husband have PG??
Even though I can't speak for anyone else, I don't think anybody deliberately ignored u.
I guess i don't know forum etiquette either. I just figured a person just chimed in when they wanted to make a statement or ask a question. There are a lot of people to remember & I certainly haven't been able to keep everyone straight.
Very sorry if I insulted you.
Posted 7/19/2009 7:26 AM (GMT 0)
A humble hello  again-

Kimike--

I feel like crap for making someone feel unwelcome:{  It is hard enough to feel alone...painful beyond belief  to feel abandoned!  ) Kimike-  what is your status today.  How are you both managing?  Is your care good?  Are your  MDs responsive and knowlegable?  Do you have a good and reliable care network around you?  Do you have children or parents near by?  How is the hospital food? HAHA!  Just a little levity...I spent almost a year in the hospital after a bad skull fracture and the food was...questionable at best.  To this day I would swear that I dined at dinner on that which was removed by housekeeping from under my bed  before grand rounds at 5:00!!!  Are you happy with your Docs?  We really care about you both:) 

Norma--Thanks for the good advice about fishing and hunting.  I'm not sure what the cruise has to offer but I do know excursion to fish are part of it.  Yeah--I priced some of the guilded hunts up there and I could make quite a few morgage payments  instead!  I think We'll stay down here.  Frankly,  I am not to eager to field dress deer here and have to drag it out of the woods.  I can't imagine the effort it would take in wild country!  Glad to know of another that loves thier "girls".  Mine are DeeDee and Winnie.  My son actually named them Delta unit 60 and War Toad.  I told him that no hen with those names would ever produce eggs! He relented. Our girls keep us in omlets too!  Yeah,  I've tried that one mg thing before...all hell broke loose.  I once did get lower, 40mg, then I got stung by a bee (very allergic) and went into anyphlactic shock, respritory arrest and was on a vent for 5 days!!!  Sucked-Sucked!!!  o you know of a safe way wean?

Gotta sleep

Peace---Willow zzzzzzzzzzzzzzzz

Posted 7/19/2009 7:47 AM (GMT 0)
Hi Kimike,

Im sorry you feel neglected here, thats the last thing we ever want anyone to feel. There is days when there is tons and tons of posting going on at a time, some can get by us, but never would it be intentional at all. So please accept my apology I did notice your post a few days ago, and read it, but I believe thats when I was going through feeling green over the starting of Cyclosporin, as I went back and looked at your post, I would like to apologize personally that I did not welcome you Kim. This is not like me and Im very embarrassed to say the least.

My heart goes out to you and your husband as I know its not only hard on your husband for having the disease but also on yourself to have to watch someone you love go through this. It really does have an effect on everyone that is involved. I hope you know that even though we did make you feel alone :( you truly are not. I hope that you come back to this forum to see we posted to your comment. I feel absolutely horrible.

From your post previously...from what I gathered Mike's wounds have closed? and just in 10 days from Hyperbaric Oxygen Therapy? Is his wounds still closed? I wish my insurance covered that, and I surely wouldnt be able to afford to pay cash for the treatment. Im however happy that Mike can get it done and it actually works well for him!

I would say Im usually the one who welcomes people on this forum and I try my best to keep up with everyone and make them feel at home. So I feel like out of the posters we have on this thread I would be the one to blame. So my deepest apologies to you again Kim.


Jan,

My email and to anyone else who would like to chat one on one is [email protected] this is also my instant messenger address for MSN Live Messenger, if you would like to add me please do so.



MARK!! THERE YOU ARE!!!!!!!!!!!!!!!!!!!!!!!!! :) I was getting worried my friend! SHEESH! you are never allowed to go out again without a map of some sort!!!


Much love and Many hugs,
Penny
Posted 7/19/2009 1:00 PM (GMT 0)
Hi Norma Thanks for giving me more info, My doc did the test and I tested positive the first time back in feb and then in may it was negative so it wasnt until my biopsy on my last ulcer they had diagnosed me with it. The thing that is mind boggling to them is that they are treating me and dont understand why the drugs I am on arent working, I am waiting to meet with at hematologist and hope fully get on anti coagulants I think that is my missing piece I am only on 81 mgs of baby aspirin. I was healling great and I started to wean off of the pred a few weeks ago, I had an ulcer that was finally closing so they started to wean me from the pred well I made it down to 15 mgs and in the mean time I had a area of irritation from my bandage which within 72 hrs of getting that I had new ulcer the size of a half dollar and that is what they got the biopsy from.
Posted 7/19/2009 5:03 PM (GMT 0)
Kim, ( can I call u Kim? )that is good news on HBO! At least there is Something working!

I was doing HBO for 20 treatments, blew my eardrums, & radiation treatments for cancer, all at the same time.Traveling a 100 miles a day & didn't do any good for me. No pain meds either since I had to drive myself.
Did hubby get checked for APS, since he has DVT's? Since the PG treatment aren't working?

Since taking aspirin, my ulcers have shrunk nearly a centimeter in a couple weeks. It usually takes a month/cm. My ulcers are 5cm & 6.5 cm.
Posted 7/19/2009 5:22 PM (GMT 0)
Sarah,
I am going to ask my Rheumy if I should go to a Hemo too. From what little I understand, we may need to be on an antibody inhibitor(plaquenil), as anticoagulants may not be enough. Ask the doc if u can't increase the aspirin for now-I don't know how long u have to wait to see the hemo.
Get the APS under control, should get the PG under control, right? :-]

Willow,
You don't hunt deer( u could, but they are really tiny) in AK, u hunt moose or bear :-] What is the name of the cruise ship? I really would like to know where they are taking u fishing, if u can find out. As far as I know, the only safe way to wean is verrrry slow or synthetic adrenal hormones, but I don't know how that works.

Hey Everyone- Let's have some fun: What phrase does your doc use that irritates u the most?
Mine is: " I understand your frustration"!!
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