Life with Protein Losing Enteropathy (PLE)

Let me tell you, I know first hand how low serum protein can effect a person. You see, protein plays an important role in fluid equilibrium. Think of protein as little grains of sand that soak up water. Protein doesn’t really soak up water, but through atom polarity on a molecular level, protein holds H2O close to it (within the cells). When a large percentage of a person’s protein molecules are missing, it upsets normal osmotic pressure of the cells, and water simply runs into the tissues between the cells. This is often called, “Third Spacing”.

I’ve had as much as 60 pounds of fluid (water) third spaced at a time. Let me tell you it really sucks!

How I dealt with it? Well, I had a tough time. I was unhappy with looking like a little fat guy. I had a hard time cleaning my self, and at one point the skin on my legs was stretched to the point of causing much pain. I had a hard time walking and could hardly bend my knees. I could barely pull my pants up from the floor, and I often had to lay with my feet and legs propped up in the air even during “fun” family events like Easter, the fourth of july and so on.

How I copped? I took it one day at a time. I cut down, way down on my salt intake. This didn’t help me as much as my doctors felt it should have.

I put my shoes on in the morning because this is when I found my fluid there to be at its lowest.
I used lotion on my legs to help allow my skin to strech.

I complained… that is, I vented my frustrations to my wife which helped me face my emotions about my condition. I didn’t want to go anywhere because I looked so bad.
I tried Beneprotein soy powder as a protein supplement. This helped my loose stools, but did little for my edema.

My doctor agreed I was in a bad way and began me on intravenous Immunoglobuluns (ivig), IV albumin, and Iv lasix. This helped some. It helped boost my immune system, helped get some of the fluid off me, and raised my albumin level if only very briefly. I was placed on a drug called Methotrexate. I was prescribed a subcutaneous injection every week at .4 mg. After the 2nd week, my doctor said to give myself an additional .4 mg which I did. That was on a Friday. By Monday, I was caughing and hacking because I suddenly developed a pneumonia like condition called methotrexate lung. The lungs fill with some weird nodules, and got really sick.

The funny thing is, about 3 weeks after that first methotrexate injection, my protein levels shot up to just about normal. This lasted for about 3 weeks and I gradually began packing on the edema again as my protein levels started falling.

I subsequently took it upon myself to try a single dose one desperate afternoon just to see what would happen. 3 weeks later my protein again shot up. But I began to develop infection like symptoms in my chest so I told my doctor what I did. Let me tell you by the time she got done with me I was promising not to do that again.

I didn’t end up with methotrexate lung again, but I did have me a scare.
Then I went to the mayo clinic. Iwas eventually diagnosed with Menetrier’s disease and was advised to try octreotide. My doctor prescribed it eventually, and a few weeks after my protein began to rise. Albumin went from less than 1 to 2.0.

My total protein went from 1.9 to 4.8.

These numbers may sound like small changes, but believe me they make a world of difference in the edema department.

The skin on my legs was so tight at one time that a shard of glass falling from counter level cut my leg with a very light glancing contact. My leg then dripped water for over a month. Every pair of pants I put on soon had a soaked leg from the shin down..

Well, this is good for now. Any questions or any stories of your own, leave them in the comments please.