Lisa's Story

Nose bleeds started during early Winter 2005 didn’t stop even in Summer

Painful Mouth soars started around May or June 2006 I thought they were just a from brushing too hard.

Then came soars on scalp about a month later.

Finally lesions started popping up on back, shoulder and chest.

 

Mouth soars I had for over 4-5 months couldn’t eat anything.Only vanilla ice cream and puddings.Very painful over 6 of them in my mouth the worst in the back of my mouth that went into my voice box.

When they finally came on my scalp I ended up loosing the hair in those spots

When they appeared on back, shoulder and chest made very painful to shower.

7-29-06   Went to Dr. K for check-up, he told me to go to a regular doctor for a complete physical because there was something underlying and it wasn’t dental.

7-31-06 Went to see Dr. D, gave check up and sent me for blood tests, tests came back normal nothing done after that.

Called Dr. K for additional help referred me to Dr. H, OS

8-21-06 Went to Dr. H, looked in mouth and decided he needed to take biopsy was thinking this was an auto-immune disease.

8-26-06 Biopsy taken and sent to LIJ.

In beginning of August soars started to form on my back, shoulder and chest, I then made an appointment with Dr. D, my Dermatologist, to see if these were related.

8-31-06 Appoint with Dr. D, he then took biopsy of the lesions on my chest and sent them to NYU, Columbia Presp. And Buffalo.

9-14-06 Went back to Dr. D for stitches then he told me that he was 95% sure that this was. Pemphigus Vulgaris and suggested I see Dr. Bystryn at NYU

9-22-06 Went to see Dr. K at LIJ, Oral Pathologist. He then told me that this was Pemphigus Vulgaris as well and started me on 80mg Prednisone

9-23-06 Started 80mg, Prednisone (3pills daily)

Started seeing lesions clear up in mouth a few days after starting the steroids. Still couldn’t eat real food for a few weeks after.

9-25-06 Appointment with Dr. Bystryn, NYU, for 3^rd confirmation that this was indeed Pemphigus Vulgaris and sent me for blood tests, He then told me to take additional vitamins and calcium because of the high dosage of steroids

I keep going online to do research on this disease but Jesus the internet will have you dead and buried within 5 minutes if you believe all of the crap they write. Oh well, who am I to complain about anything, there is always someone worse off than yourself. What keeps me going is my Aunt she was diagnosed with cancer and it spread everywhere and she did not even complain about the disease or the pain she was in.  All the way to the end.  My Dad when he was diagnosed with Sarcadoisis was on steroids for over 5 years.  He couldn’t play soccer anymore (which he loved to do) and was told he couldn’t work again. These are the people I think of when I am feeling down about getting dealt with this. My Dad had been in remission for years now and not once did he complain that this was happening to him . My Aunt unfortunately passed away awhile ago but she was a trooper.

10-2-06 Went back to Dr. Bystryn was then told that I had developed Herpes on my mouth because of all of this happening to me caused it and gave me Famvir 500mg (3 pills daily) for 7 days to get rid of it. Then said I should start taking 120mg of steroids.

10-7-06 Made appointment with Dr. B, Ophthalmologist, had check up to make sure of no cataracts, glaucoma and no lesions in my mucous membranes in eye. Clean bill of health.

I went to an Autoimmune Disease Support group at NSUH at Glen Cove thinking maybe I will find somebody who is going through the same type of things as me, get some answers. Well, this was not for me. The people here were very angry that they had to take steroids and that they were dealt this hand in life. I couldn’t believe my ears. They asked if I was angry. I wasn’t at all. I told them that if all I had to do is take this pill every day and that would help me function and not be in anymore pain I am all for it. There is no place to feel sorry for yourself you have to concentrate on getting better. I figured I must have gotten this for some reason, maybe just one of the doctors I will see or one of the interns that is sitting in on my case will be the one to come up with a cure for this. There is a reason for everything that happens in life, who are we to ask why just go with it and let things happen. Needless to say I never went back to the support group, I’m not angry about my disease just want to know more about it.

10-11-06 Check up with Dr. D to tell him that Dr. Bystryn suggested I take 120mg of steroids he agreed, stay on that dosage for 2 weeks to see if anything clears up

Since starting the 120 mg I have found major improvement. I can eat regular foods now the soars are almost completely gone in my mouth. The soars on my back and chest are dramatically better. Since Dr. Bystryn didn’t take my insurance I told him that I would have Dr. D continue with my medical attention with him consulting Dr. D when he needed it.

Pills that I am taking now: (as of 10-11-06):

Prednisone 120mg 6 pills daily, take them before 8am

Oscal D 500 2 pills daily

Zantac75 3 times daily

Twin Lab Pre-Natal Vitamins 2 pills

Vitamin E 400 IU 1 pill daily

 

Since I am on high dosage of Steroids I need to go for the following tests:

 

Bone Density Exam v

Chest X-ray v

Stool Test v

Blood Tests v

Cholesterol v

 

And so the journey begins.

 

10-25-06 Dropped to 80mg a day (4 pills/day)

11-23-06 Dropped to 60mg a day (3 pills/day)

12-21-06 Dropped to 40mg a day (2 pills/day)

1-18-07 Dropped to 40mg one day, 20 mg the next day (really 30mg every day)

 

2-05-07 Started showing signs of steroid induced diabetes. Was told to go for blood work and start a diabetic diet for 3 months. I suspect it was the weight gain that really pushed me to this stage since at the same weight when I was pregnant with my son I was sent for gestational diabetes test as well .The steroids have blown me up to a size 14 now when before the steroids I started at a size 8. Oh well! I will do as I’m told. The cure sure beats the side effects.

I continue to see my two doctors every few weeks, Dr. D who controls my medication and Dr. K who is making sure that I am not getting anymore soars in my mouth while bringing in his dental students to see what PV looks like since they have never seen it before or who knows the next time they will every see it again.

 

3-8-07 Dropped to 40mg every other day

4-26-07 Dropped to 30mg every other day

 

5-4-07 Go for yet another blood test for diabetes, glucose level still on the high side. I know if I ever beat this and get off of steroids that I can never go over 164 pounds since that is when this diabetes scare comes about for me no matter what.

 

5-31-07 Dropped down to 20mg every other day

 

I am kept on this dosage for the month of June as well. No signs of any soars, yippee!!!!

 

7-12-07 Dropped down to 15mg every other day

 

8-7-07 Another blood test! This time my weight dropped by a few pounds and no more diabetes scare. I knew it was my weight.

 

8-22-07 Dropped down to 10mg every other day

10-3-07 Dropped down to 5mg every other day

12-28-07 Dropped down to 4mg every other day

2-6-08 Dropped down to 2mg every other day

3-20-08 NO MORE PILLS!!!!! YIPEEEEEEEEE!!! Come back in June for a check up but if there is any activity immediately come in.

 

I keep going on the PV site and I am seeing a lot of people that have PV and an immediate family member has Sarcadoisis. Funny my Dad was diagnosed with that rare disease over 20 years ago at 45 years old. And now over a year and a half I was diagnosed with PV. Maybe Dr. Bystryn should look into the similarities between these coincidences.

 

I also volunteered for the Heart2Heart program. This is a lonely and scary disease to have with no one to talk to about their experiences. You always have to look at the bright side of things. I am still alive and kicking and that’s all that matters to me.

 

5-4-08 Absolutely no activity to day. I am slowly deflating thank God!!I can see a big difference in my face and stomach. I keep going on the PV site to see if there are anybody that ended up getting the soars back after how long in remission.

 

I am still taking vitamins, vitamin E and Acidophilus but no more steroids. Hopefully this was a freak thing that came out of me and I will never see it again. I’m keeping my fingers crossed.

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