Newbie!

[Guest guest]

My story is a LONG one but I will tell it later.

I was just diagnosed with EN the other week after this all started in

Sept. I already do have auto-immune issues(ulcerative

colitis,fibromyalgia,osteoarthritis,etc.). My dermatologist told me

that EN does not usually develope into ulcerated sores.He did a biopsy

of my arm(big lumps).He did not do a biospy of my legs because they

were so bad(big deep open sores),he did not want to make it worse.He

did say that most likely I have pyoderma gangrenosum on my legs.(I can

have both apparently.)

All I can say is,this all started when I live trapped 3 feral cats and

took them to the local shelter(no kill). I ended up bringing fleas into

my house and I got bites all over.These little 'injuries' led to

EN/PG.I also bumped my shin during this and that turned into EN lump.

I will make a photo album shortly and show the start to finish,well it

is not over yet. I just started taking Dapsone about a little over a

week now.(along with folic acid)Blood test this next weke and then back

to Derm. Dr. on Dec.3rd. This is no fun AT ALL.

I am glad I found a group that deals with this.Totally not like my

other pain issues.

Sandy

[Guest guest]

Dear Sandy,

I too had a very severe outbreak back in 1983 which was preceded by a bite to my hand that turned black from a feral kitten. You're probably having swollen lymph nodes too. My were swollen so badly so long, I had a biopsy done in 1985.

The Lagg's Organic Apple Cider Vinegar seems to be the big cure all that everyone in this group talks about. I haven't used it personally, but have read many notes from group members who have used it with great success.

Vitamin D-3 is also very important. It does more to protect you from getting sick than Vitamin C. It is also very important in preventing cancer.

Stay off your feet as much as possible. Also, some members find great relief in cold compresses and compress wrap bandages and support hose.

When you're tired, rest. Rest is always very helpful in recuperating. Make sure that you take any medications or vitamins on a FULL STOMACH, or at least NOT ON AN EMPTY STOMACH. I like to take my meds with milk or ice cream so that my stomach is protected. Ibuprofen (a/k/a motrin, advil) seems safer and better than aspirin in relieving the inflammation.

Also, allergy medications such as Benedryl or Claritin have been very helpful for me to stay functional and sleep well. They help with aches, malaise, sleeplessness. I take the Benedryl only at night, as it puts me to sleep and take Claritin during the day only. Don't ever mix the two or take them at the same time.

There are many conditions that cause EN and PG, and curing the EN requires that the cause be discovered and dealt with. In some cases, no cause is ever found and the EN/PG can become chronic.

There is a very strong connection to EN/PG and STRESS. This disease feeds on stress, all kinds of stress, physical, mental, emotional. Anxiety and depression are your enemies when you have this disease. I spent many years of my life looking at how to reduce stress, not realizing at all that I was physically overexerting myself. I am a very strong Type "A" personality in a very Type "B" body. Things that have triggered my EN include lifting too much weight and running too much on hard surfaces. The only recent lump I've had came from from pulling too much weight and I got it on my right arm near my elbow. That was the first arm lump I had. It cleared in a couple of days after I took it easy.

I once had it from silica -- dust from road construction. The day they paved our street, it cleared. Many times it's seemed to be a delayed reaction to stress. It is basically an auto-immune (severe allergic) response to something you've encountered or a condition you have (such as AAT deficiency, hepatitis, many venereal diseases, birth control pills, sulfa drugs, and many other known causes.)

With this illness you may be eligible for using medical marijuana. In places where it is legal, it has been used with some success in both treatment and prevention.

Be informed as to any medications prescribed to you. I strongly recommend The Pill Book or a similar book to give you information you should know about any medication you're on.

Don't take this disease lightly. It can lead to much more serious illnesses, such as cancer. Good luck with your treatment and keep us informed.

Sue

EN since 1976

[Guest guest]

Well my EN is totally gone on my arms, I still have one on my shin. But I still have PG bad on my legs. One leg is getting better. But the other leg is bad. It still hurts.But it is a tiny bit better.The pus is not running out of my holes as bad as it was.

I am now taking a higher dose of Dapsone and also Prednisone. Of course I am foreve4 getting my blood/urine tested. I now have to keep better track of my blood pressure because of the predinsone. When I was taking 3 at a time,I could tell my BP went higher.(I do take a daily med. for this,for yrs.) I am now down to 2 a day for 2 more days,then 1 a day. The Dapsone did give me anemia already too even though I was taking prescription Folic acid and a mega daily vitamin with iron and folic acid. But I still got anemia. I will just deal with this until I can get my legs healed.

As for stress,LOL- I am a single disabled mom(chronic pain)my stress is always near. My main problem with getting these diseases is ulcerative colitis. Once I get healed, I will have to find a new gastroenterologist.

Sandy

[Guest guest]

Hi Sandy,

I'm interested in your symptoms because with this EN outbreak I scratched the top of the biggest lesion -- it was so itchy -- and now I have a deep hole that exudes some sort of fluid -- clear at first and then a bit yellowish. The big one has started to fill up but still has liquid leaking out but now I have two smaller holes that developed near it and it also has some oozing. The swelling on both feet have gone down considerably but some redness persist. I have a swollen tendon on my left ankle but even that is slowly going down. I'm just concerned about this holes and would really like to NOT go on any medications except for pain meds. I'm using Naprosyn but only when the pain gets too intense. I also have Indocin but I try to reserve that for when the pain gets really bad -- it hasn't happened yet. I'm getting a bit frustrated about this as this EN episode has been dragging on since the end of

September. My last big outbreak was 25 years ago with just occasional painful bumps here and there through the years. This is the worst ever -- probably because I'm older and had undergone a very stressful situation recently. Thanks to this forum I don't feel so alone anymore. No one I know has ever had EN. As fas as I know I'm the first in my family to ever get this.

Best and Merry Christmas,

Flo

Subject: Re: Re:Newbie!To: erythema_nodosum_Group Date: Sunday, December 7, 2008, 12:17 PM

Well my EN is totally gone on my arms, I still have one on my shin. But I still have PG bad on my legs. One leg is getting better. But the other leg is bad. It still hurts.But it is a tiny bit better.The pus is not running out of my holes as bad as it was.

I am now taking a higher dose of Dapsone and also Prednisone. Of course I am foreve4 getting my blood/urine tested. I now have to keep better track of my blood pressure because of the predinsone. When I was taking 3 at a time,I could tell my BP went higher.(I do take a daily med. for this,for yrs.) I am now down to 2 a day for 2 more days,then 1 a day. The Dapsone did give me anemia already too even though I was taking prescription Folic acid and a mega daily vitamin with iron and folic acid. But I still got anemia. I will just deal with this until I can get my legs healed.

As for stress,LOL- I am a single disabled mom(chronic pain)my stress is always near. My main problem with getting these diseases is ulcerative colitis. Once I get healed, I will have to find a new gastroenterologist.

Sandy