Thursday, August 2, 2012

Update on the mystery of the disappearing voice

Bonus points for the emergency situation while waiting in the doctor's office today.

Today I went to the rheumatologist because of the deterioration of my voice. There are a few possibilities - 1) rheumatoid arthritis attacking the cricoarytenoid joints of my larynx; 2) the biologic drug Enbrel causing some weird side effect, like nodules developing on my vocal cords; 3) an infection of some sort. Anyway, I had to miss more work to go to this appointment (already been out sick once this week; I had been doing well over the last couple of months on the Enbrel before flares started kicking up).

First fun event -- someone in one of the rooms where you wait for the physician either had a stroke or some sort of emergency, so my doctor and the EMS crew had to get her stabilized and I guess rolled over to the hospital from the clinic. The chaos included the EMS coming into my waiting room and thinking I was the patient in question and started to ask me questions. Hmmm. I was sitting there checking Facebook on my phone, so I hardly looked like I was having a stroke, lol. I directed him to the room across the hall...eventually the got the patient on a gurney and off to be checked.

Anyway, I have been extremely hoarse; after about 10 minutes of speaking it starts to hurt, and it feels like something is in my throat all the time. Surrounding areas near my throat and lymph nodes are inflamed. I've also been running a low grade fever for over a week (99.6-100). My thinking is I could have an infection of some sort. It's not uncommon on Enbrel, which suppresses your immune system, to leave you vulnerable to odd infections most people can fight off.

The rheum was concerned enough to refer me to the ear/nose/throat department for a Monday slot instead of the August 21 appointment they originally gave me. Since X-rays cannot detect what damage is in the soft tissues and small joints affecting the larynx/vocal cords, the ENT is going to have to put a scope down my throat to take a peek. Fun.

To be safe, the rheum told me not to take this Saturday's Enbrel shot until we conclude there is no infection present. If it isn't then she wants to switch me to another biologic drug, Humira. That is injected every other week. She's hoping this will reduce the amount of time and level of severity I am sick from the medication. At the present time my weekends are mostly filled with fever and chills and fatigue from the Enbrel. We'll have to see what Humira does.

And now that the RA has left me with bursitis in my left hip that is not helped by Enbrel, I've been re-upped for physical therapy at the heated pool at a local children's hospital for 8 visits. About all they can do for me is strengthen the muscles around the bursa to help some. I cannot have another steroid shot in my hip for a few months (too bad it only helped for about a week!).

Meanwhile, re: the disappearing voice, there's not much I can do except voice rest.  Fortunately don't have a lot of meetings that require that I speak a lot. Re: pain relief, I cannot take NSAIDS for pain because of my liver disease, and I cannot take muscle relaxers for the tightness that is giving me headaches since I have bad reactions to similar drugs. So I'm loaded up on the Icy Hot patches and lotion tonight to try to get some sleep.

Should be an interesting week getting along without Enbrel. My joint pain may return with a vengeance. Fingers crossed it's not completely debilitating.

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