I apologize in advance for the lengthy post. I have never really engaged in online forums, so this is a bit new to me.
I am a 48 year old male. Last year I decided to take control of my health. I decided to take care of several things that I had put on hold for many years - primarily my weight. I lost 70lbs from May to October of 2013.
I also decided to take care of a breathing problem that had been an issue since I was a kid. I visited an ENT that eventually performed surgery on my sinus passages to clear obstructions and help minimize my sleep apnea.
In addition to addressing the sleep apnea/weight issue, I went to a dermatologist to have a cyst removed from my back that had been there for 15 years. From the time I made the appointment to the time I visited the dermatologist I had developed some (what I thought at the time), strange conditions. I had developed male thrush along with psoriasis in my scalp. I have no history of this and it only appeared in those two locations. My dermatologist had me treat both topically which seemed to be affective. I really didn’t get too concerned at the time.
Shortly after all of this, I developed severe pain in my right index finger. It was swollen and incredibly painful. My right hand was basically useless. I visited two different orthopedic surgeons and it was diagnosed as Tenosynovitis. I eventually had two cortisone shots in my right index finger. This helped alleviate the pain and swelling. Approximately a week later I woke up and I had the exact same pain in my left hand where my thumb meets my hand. You have to understand that this pain is debilitating and excruciating. I called the orthopedic surgeon and made an appointment. She immediately recommended a rheumatologist.
Over the course of the next few weeks I developed additional symptoms. Both of my feet, my left wrist and elbow had all developed severe pain along with the original pain in my right hand. I am an avid bowler and golfer and had given up both at this point.
In January my wife and I met with the rheumatologist. After many rounds of blood work, he informed me that he could not conclusively diagnose me. There was not enough fluid in my joints to draw so he could not rule out if it was gout. His medical opinion, and recommended course of treatment, was to treat me for Psoriatic Arthritis.
He informed me that his real recommendation was to take Enbrel. But, he told me that insurance companies would not approve this medicine until I first tried MTX. He told me that Methotrexate was a low-dose chemotherapy that was effective in some RA patients, but generally not affective for people with PSA. He informed me that I would have to try the MTX until such time as it was proven ineffective. He told me that MTX would have a very negative affect on my liver. In the meantime, he would also prescribe Dexamethasone at 6mg daily to help with the swelling and pain.
After much conversation and research with my wife, I decided to not take the MTX. I took the steroid at 1/3 the dose prescribed (2mg daily). It has been very affective at alleviating the pain. I have historically taken Percocet for years after a motorcycle accident left me with severe back pain. The steroid has allowed me to discontinue using this painkiller. I was amazed!
Two weeks ago I met with the rheumatologist. I wanted to be upfront with him and told him exactly what my wife and I had decided to do about the medications. I told him that we had done a lot of research and did not see the MTX as a viable course of treatment. It seems to me that taking a poison that he had already described as ineffective to meet some insurance requirement did not make sense to us. I asked if my condition would allow me to use steroids “as needed” and avoid the MTX.
He seemed quite upset. He told me that I should discontinue using the steroids. He informed me that, in his opinion, the only reason I did not want to take MTX was because I did not want to quit drinking (I had told him previously that I drink alcohol). He based his opinion on a comment my wife had made. She asked him, “How bad is this medicine you’re prescribing if my husband can’t have a beer. What is going to happen if he has one drink?”
He also told me that he would have no part of a long-term steroid therapy. He also told me that he would be “laughed out of the profession” if he were to entertain my ideas regarding my treatment. I found him to be very condescending and offensive. He told me to come back in a couple months and he’d check on my condition. He is no longer my doctor.
It is my opinion that a doctor should be a patient advocate. So I have an appointment with another rheumatologist next week. Hopefully this one will be more concerned with my health and helping me understand my options.
I realize there are insurance requirements, but it seems to me that there must be options to taking MTX. I am considering telling the new rheumatologist that I have been taking the MTX to meet this requirement so that I can get the approval for the biologics. I hate to be less than honest with my doctor, but my last experience has left me a bit jaded.
I tried to stop taking the steroids but after two days, I could not get out of bed. I was out of town on a business trip and had no choice but to start taking them again. I had to take 20mg of Percocet just to get dressed. As you can imagine, this is all very devastating. Four months ago I was playing golf, bowling and walking several miles daily with my wife and our dogs. Now I can’t get dressed in the morning without chemical assistance.
Another side affect is that I do not sleep much anymore. I guess that’s the steroids too. It’s 5am and I’ve been up since 1. My original rheumatologist prescribed Clonazepam but it’s not very affective and he would not refill the prescription – as I said, he did not seem to appreciate me trying to participate in my own treatment.
I am sure my case is not unique. As this is all very new to me, I would appreciate any feedback. If anybody has any thoughts regarding how to best approach these doctors, I would really appreciate your input.
I have also developed a new area of pain in my back – not my spine but more my ribs. I describe it as feeling like Mike Tyson punched me in the back. It is the same pain as I have in the rest of my body. Could this be a product of PSA?
Thanks for taking the time to read my post. I look forward to your replies.
- Shawn
