Welcome New Member Hal Zenner/ Case History/EN and UC

[Guest guest]

Hi Hal,

I don't usually post questionnaires on our message board although they

are kept in our " member Medical History " Files on the group site.

Yours, however, is quite interesting and you are a male member. One of

our newer male members was wondering if he was alone, so another

reason to post your questionnaire.

UC is related to EN and a sign that the UC is not in good control. Now

the pain on the bridge of the nose has me stumped. But I agree it

could be an infection and EN is triggered by infection too. You know

that the task at hand is to get off the prednisone and get the fistula

repaired.

And as you mention prednisone must be tapered down slowly.

Hopefully you are able to get some rest--and I mean bed rest if

possible. Elevate the legs above the heart level. It will help with

the swelling or edema. Also, and this is good to do if you are going

to be on your feet, use compression stockings or ace bandages to wrap

the lower legs. Not too tight, but enough to keep the swelling down.

This may help with the pain. I have had chronic EN for 40 yrs now. I'm

idiopathic --no trigger has ever been found. I have recently been

soaking my leg [i get EN in one leg only] in cold water to which I add

an ice pack to cool it further. I use a trash can--the kind that fits

under a paper shredder as it fits my foot in easily that way. At least

20 minutes will cool the leg and act as an anti-inflammatory. It does

no harm to soak longer if you are comfortable and the water is not

freezing. This is something I have been experimenting with and it is

working great for me. You will notice all the above treatments I use

are non prescription. I have never used meds for EN as I have a mild

case and was not properly diagnosed for the first 5 yrs--so figured

out what worked for me on my own.

Our other members may have some other insights for you.

Love,

idio. EN '68

Moderator

Hal's Questionnaire:

Hal Zenner's Case History

8/12/08

1. Your name and age: Hal Zenner, 57

2. Your location: NJ

3. Your email address: hal.zenner@... (or zenner@...

.... but this will change)

4. Your Yahoo ID; hzenner

5. Describe your erythema nodosum/PG symptoms or, if you do not have

EN or PG, please explain why you wish to join this group.

This is a long story...hopefully, not too long...but this has been one

unpleasant " trip " over the past 1/2 year....

In March/April (this year) it started with a pain on the bridge of my

nose (I know this is strange...but read on). It was quite painful to

the touch, and I thought I had a major sinus infection--something I

never get. In any case, it subsided to be replaced by " arthritic

like pains " in my knees and my ankles. At first I thought the pain

was due to tendonitis because I was extensively exercising at the Y

and thought I overdid it ... and saw my family MD, because I was about

to leave the country for a week, and was having pain while walking and

at night. He was concerned and said it wasn't tendonitis. He did not

diagnose it. He did ask if I had psoriasis in my family and didn't

like the color of my fingernails (very pale) and ordered blood tests

and referred me to a rheumatologist when I returned. At this time I

had no other symptoms other than pain in knees (or just below the

knees) and ankles. He prescribed ibuprofen to be taken only for a few

days because I have Ulcerative Colitis. The week in Europe, the pain

got worse. The day I returned from Europe (late April), I had a very

high fever -- 102-103+ for 2 days with uncontrollable shaking. I went

for the blood tests and saw a rheumatologist. Things were pretty

normal (not Lymes, rheumatoid factor was normal...whatever) ... no

swelling or redness yet, and the rheumatologist basically said to come

back in a few weeks if the pain continued. The pain started to get

much worse--to the point I really had trouble walking and couldn't

really go to work. At this point I started to have painful red

" nodules " below my knees and ankles -- with swelling of both ankles

and one knee. I went to a Sports Medicine Dr (still thinking it was

some bizarre case of tendonitis) who asked for a complete blood test

and he " freaked out " ...saying my platelet count was off the charts,

low red blood count (anemia), etc. He did not diagnose the problem,

but suggested that I see a specialist (inflamatory) in NYC.

The next day I had a routine appointment with my Gastroenterologist.

(I recently had joined the Crohns and UC Center at Wood

Medical School). My doctor (head of the center) immediately diagnosed

it as Nodosum and prescribed Celebrex for the pain. It helped a

little. I also had very low red blood count and was put on Repliva.

The pain got worse and worse...to the point that I had trouble walking

to the bathroom during the night and had to use a urinal. I saw the

Rheumatologist again, and he doubled the dose of Celebrex and also

prescribed Darvocet N for the pain. Finally some relief from the

pain, but the nodules still got larger and redder and more painful.

The swelling was very bad at night and early in the morning.

While all this was going on, I started to pass " air " while urinating

and saw a Urologist who diagnosed it as a Vesicointestinal fistula

(fistula due to a diverticuli between my large intestine and bladder).

Last thing I needed. It was confirmed by lab tests. He said I

needed to have surgery--which I do. During this time, the

Rheumatologist, conferring with the Gastroenterologist agreed to put

me on 40 mg of prednisone to ease the symptoms of the Nodosum--which

was VERY bad at this point. The effect of the Prednisone was

amazing...within 2 days the pain was much reduced...I stopped taking

the pain killers. However, he did not like the results of a blood

test (platelet count was still VERY high) and referred me to a

Hematologist . The Hematologist saw some improvement in the platelet

count and said it was " normal " during an inflammatory episode like I

was going through and the lowering was likely due to the Prednisone.

Since it looked like I was responding to the Repliva, I did not need

to get blood " effusions? " and will see her again next month.

Sigh, so next I went to see a surgeon at RWJ to take care of the

fistula problem ... and surgery was contraindicated due to the high

dose of Prednisone I was on. The risk of infection, etc. was very

high, and the surgery would have been more " radical " than I

wanted...so it is postponed until end of October. (The prednisone

also caused bad side-effects, including insomnia and hands shaking and

cramping up ... I was prescribed Clonazepam to counter these side

effects). I basically have to wean off of Prednisone--which I've been

doing for about 6 weeks now and am currently at 5 mg a day. During

the past 6-8 weeks, all symptoms of the Nodosum have disappeared. I'm

walking, doing moderate work around the house, feeling pretty good.

Now for the bad news, and the reason I'm joining this group.

Two or three days ago, I had pain once again on the bridge of my nose

(I finally returned to this " symptom " ). Yesterday I started to have

pain and tenderness below one knee (arthritic -like), and my left

ankle is hurting a bit. I'm afraid the Nodosum is returning; now that

I'm almost weaned off the prednisone. I have two fears: One that the

Nodosum will return and two ... what will happen to my scheduled

surgery. The surgeon wants my adrenal glands to recover for about 2

months before performing the surgery. So, if anyone has any advice,

I'd appreciate it.

6. List any other health conditions.

Ulcerative Colitis

Diverticulitis

Fistula between large intestine and bladder.

7. State what medications or treatments you take for EN, and their

effectiveness:

Celebrex somewhat effective for pain.

Darvocet N better.

Prednisone totally blew the symptoms away within 2 days. (40 mg a day)

8. When did you first get erythema nodosum or PG? March/April 2008

9. How long have you had erythema nodosum or PG? 5-6 months.

10. Do you agree to treat all EN members with respect? Yes.

11.Do you agree to post NO advertisements for any products or

services? Yes.

12. How did you find this Group? (Google, Yahoo, Ask Jeeves Search,

referral from another group or person etc.) Google search. ---

looking for EN " relapse "