I would like to thank all of you who so kindly and generously took the time to respond to my last journal, " INFLAMMATION AS THE CAUSE OF SARCOIDOSIS."
I had intended to delve more deeply into the correlation of the imbalance of bodily chemicals, created by stressors, thereby resulting in a totally out of control immune system attacking and overreacting to it's perceived threat, culminating in Sarcoidosis.
I'm also convinced that this phenomenon is genetic in nature. It's been in your family somewhere in the past. The inflammation in those of us who have sarcoidosis, seems to come and go. I feel that flares occur more often in people who through no fault of their own must live an overtaxed lifestyle in order to survive. We'll hopefully be able to discuss this further at a later time.
Sometime in April, with accelerating pain in places I had never experienced pain before, I decided that I would take control of my health care in a way I had never done before.
You've all read my opinion of my unnecessary lung surgery. This time would be different. I would question the efficacy of my doctors' diagnoses. I wasn't going to just take their word for anything without at least doing my own research and if necessary, getting a second opinion.
The first doctor I saw was a rheumatologist. He was what we wish all of our doctors could be; smart, kind, extremely cognizant of all I'd been through, very thorough in his examination and as far as I could tell, extremely knowledgeable in his field of medicine. My diagnosis was Fibromyalgia.
He suggested Lyrica, but also stated that he did not feel that the huge list of side effects warranted taking the drug. I tried it for a few days and could not function at all while taking it. I had extreme dizzy spells and did not want to take it any longer to see if symptoms would go away. The drug was miserable for me. He suggested that I remain on the pain medications that I was already taking for chest wall pain due to the lung and chest surgery I had in 2004. This works fine for me along with a heating blanket and hot showers(a hot bath is better) and sleep, lots and lots of sleep.
Next, I see a pulmonologist. He has all the qualities of my rheumatologist. I have a CTScan of chest with contrast. Sarcoid is still active, but not advancing as rapidly as last two scans, so no recommendation for me to take prednisone or any other drug, with the exception of inhaled Advair 2x per day. Also have Albuterol on hand in case of emergency. I have another appointment with him at the end of May to discuss a PFT that I have this week. Will let you know how this all comes out as I still have a lesion near my heart which could not be removed during surgery and I blame it for most of my center chest pain.
I need to interject here the severity of my depression. I am diagnosed with major depressive disorder-severe. This is not as a result of the surgery or of any other traumas I've experienced, although being operated on needlessly and having Sarcoidosis certainly does not help me in my daily battles with my depression. I am missing some of the chemicals in my brain that the rest of you have that enable you to cope better than I do when faced with adversity. My psychiatrist feels that the disease of sarcoidosis carries depressive cells that interfere with some normal people's brain chemistry. The disease and the surgery put me over the edge. The good news is that we finally got my medications right and this is the reason I am so concerned about making any changes.
I take 10mg of Lexapro 2x per day. This is an antidepressant with minimal side effects. I also have severe panic, anxiety attacks. For this I take 1mg of Xanax 3x per day if needed and I rarely need to take that much.
For pain, I take VicodinES one tablet every 12 hours if needed for pain and I try to do without taking as much by substituting Aleve when I can.
Next doctor I see is a psysiatrist, a doctor of physical therapy. EGADS NELLIE ! WHY I went along with this one, I'll never know. Believe it or not, I will go to PT but, this doc wants me to try just about everything but weight lifting and I would love to be in the shape I was in just 5 years ago, but my health has changed quite a bit since then. He does all the talking and I do all the listening. I take my script and nod my way out the door.
Next doctor I see is a Pain Medicine Doctor. He has the type of personality we all love to hate. He tells me that I most likely will become addicted to the Vicodin, but he offers me no alternative. He then skips over to his ideas on Fibromyalgia. He suggests Lyrica. AHA... I've got him on this one. I tell him I've been there, done that, got the Tshirt.
Pain doctor then mentions tricyclics, (you gals sure know what you're talking about). The only problem I have with this is he mentions Elavil 10-50mg and I remember back as that being the medication my uncle was taking when he committed suicide. I automatically drift back into head-nodding mode.
He also mentions Pamelor 10-50mg and I think it was at this point that my eyes started to glaze over. To my knowledge, he's just mentioned two of the oldest tricyclics on the market today. Cymbalta was never mentioned nor was Plaquenil. I left there with a prescription for Flexeril, a muscle relaxant, that doesn't do squat.
I go home and call my psychiatrist to ask her opinion. Her suggestion is to keep things as they are for now. She explains to me that SSRIs like the Lexapro I've been taking, prevent or slow down the reabsorption of serotonin. Tricyclics, on the other hand impact both serotonin and norepinephrine, and also have far more side effects than SSRIs. And, Michele, I don't know what Plaquenil would add to the mix, but I will certainly ask her. And, Pam, she has mentioned the possibility of changing the Lexapro to Cymbalta which is another SSRI, but I do believe she is hesitant to change medication when I am doing so well on the Lexapro and Xanax.
My psychiatrist is the best physician (whose care is absolutely the finest) I've ever seen. She asks me constantly if my pain is under control. We have at least one hour of talk therapy per month.
She seems to believe in treating all aspects of a disease and does not believe that one pill can cure all. She also makes a genuine attempt to prescribe medications noted for lesser side effects.
I feel my depression is totally under control. She does not agree with me, believing and telling me that I could be even better.
We've all suffered enough with this nasty disease. If you're in pain, find a doctor who will treat your pain. If you're depressed find a doctor who will treat your depression. Put yourself as your #1 priority. Maybe that is the real cure for this and any autoimmune disease. Throw away all that is toxic to your good health. Be Well My Friends... JanetG