Remember the old saying - take 1 step forward and 2 steps back. I feel that is what I am doing. Today was my Immunology appointment.
I wanted to try to get in the Xolair clinical trials for Idiopathic Anaphylaxis but I have to be totally off prednisone to be considered. Dr. Krish feels that I am prednisone dependent and probably will never get below 20 mg per day. He is adding Plaquenil to my drug regime and hopes this will help me lower my prednisone dose a little bit more. I am also going to start taking Gastrocrom for the gastrointestinal symptoms that I get with anaphylaxis.
Remember the dreaded doxepin that everyone that I thought was the cause of my tachycardia???? Remember that no one would listen to me when I said it was not the problem??? I start back on it tonight. LOL When will doctors ever learn to LISTEN to the patient. I was on doxepin for months before the tachycardia started! Doxepin is classified as an antidepressant, but it has H1 and H2 blocking properties, anticholenergic properties (for my tummy) and helps me sleep better. I really felt no big side effects from it other than drowsiness, and it isn't a lot better off it because I was still taking huge doses of Benadryl around the clock. If it works, don't fix it. The only down side to doxepin that I have is that it does increase my appetite. Dr. Krish said I was too fat today. NO JOKE - I have a mirror! I have averaged gaining 1 pound per day this week and I have not been eating very much.
Plaquenil is known to cause problems with the eyes, but since I checked out very well with the Opthalmologist a few months ago we are going to give it a try. It has less side effects than some of the more commonly used drugs to control IA.
Our long term goal is to get me to no more than 1 anaphylaxis per month. Does anyone know someone who would hire a person who might go into anaphylaxis once a month???? If I were an employer I would not. You cannot be very dependable with the dark cloud of IA following you around. Tomorrow I will call my Long term disability case worker and run that by her.
I am having a PVT with LV DLCO with and without on Tuesday. That is a fancy PFT with an inhaled contrast. They are looking for some lung problem that will explain why I can't breath. Cardiology thinks I have pulmonary hypertension. I have a message to call them also, probably to be scheduled for a right heart cath or a Swan-Ganz catheter. It is put in through a vein in my thigh or neck and ran through my heart into the artery going to my lungs. They can measure my blood pressure there to see if that is the problem. My internal med doc told me yesterday that they might be doing that test it is the best test to determine if pulmonary hypertension is the problem.
As for everyday life, such as it is, I haven't felt like doing anything this week. No knitting, not even TV. Cuddling up with Carmen is about all I can handle this week. It is odd but I actually feel better mentally since Dr. Krish is not so upbeat and positive. I am a total honesty kind of girl. If this is as good as it gets, tell me. I will deal with it and adapt. When people tell me I am going to fully recover and I feel so bad I can only take 3 dishes out of the dishwasher at one time before resting, I feel frustrated and angry with myself. Please just give me plain simple truth! If it gets better than expected HURRAY! If not then it is no surprise and my life will go on as "normal" for me. I've seen this happen to patients during my 21 years of nursing. People with incurable cancers think they are going to get well because doctors don't give them plain and simple truth. My favorite memory of a truthful doctor is Buddy Clayton. He is a Family Practice doctor who now works in Urgent Care. I worked with him for several years. Most patients loved him, some hated him. If his patient was on the downward path he just sat down and asked if they were right with God. If they said no, he told them they had better get that way because they were going to meet him soon. If they said yes, he said good. That is what I want! Tell me!