Don't Skip Doses of Prednisone

Today was pretty awful. The prednisone has been causing a bit of insomnia so Dr. Awadh suggested I switch to taking all of my doses in the morning instead of 2x a day. I was really stupid about it and didn't take ANY prednisone last night, thinking I would take all 40mg this morning. Well, of course I woke this morning with pretty bad joint pain again. My wrists were bad, both my ankles and feet. I could hardly lift Amelia. It made me sad because I had been thinking about how good I had been doing and it just brought into focus that all of the progress was from the prednisone. It isn't like I'm in remission.

Meeting Dr. Latinis

I saw Awadh and Dr. Latinis today. They had gotten my labs and Lung CT scan from 2 weeks ago back. My labs indicated that the prednisone had caused a drop in the inflammation etc even after only the 4 days I was on it. My lung CT showed 2 nodules / cavities in my right lung. They had showed my lung CT to a pulmonolgist who recommended I have a CT guided needle lung biopsy. They want the biopsy to be certain that I don’t have some sort of infection in my lung before they put me on immunosupressents and secondarily to confirm the WG diagnosis. They said it is wouldn’t be uncommon for me to have WG and still have some sort of infection or even fungus in the necratized lung cavity. If they start the immunosuppressents when I have an active infection, they could obviously make me very very ill. I am fairly opposed to an open or even VAT lung biopsy, but I comfortable with the needle guided one.

My needle lung biopsy will be on 08/01/07 (Wednesday) and then I will return to get my treatment plan with Dr. Awadh on 08/06/07 (Monday).

Assuming I don’t have an infection in my lung, I will probably start Cytoxan at that time.

Better Symptom Tracker?

I need a better way to track my symptoms than randomly recording what is good or bad each day in this daily journal I think. I would like a template that lists several symptoms like fatigue, weakness, arthritis, congestion, etc and then I rate them on a scale of 1-10… That would make it much easier to see a trend if I was getting better or worse.

My worst pain is in my left pointer fingertip joint.

Prednisone Worries

In general my arthritis is much better although today my left ankle has been bothering me a lot and my left knee a little bit. The fingertip joints on both my pointer fingers are very sore. I keep hurting them when I try to turn on a lamp. I have noticed that my hips ache slightly when I am trying to go to sleep. I am hoping this isn’t the dreaded hip bone Avascular Necrosis being caused by the prednisone.

Speaking of prednisone, I am really hungry a lot of the time. It is really hard not to eat all day long. It is kind of nice to have an appetite and the ability to chew again though (now that the gingivitis is gone). I also think the prednisone is making it hard for me to go to sleep at night (It’s 2:30am now). I am going to ask Dr. Awadh if switching to 1x a day in the morning would be better than taking a dose both at morning and night.

I was pretty tired today. I can barely sit up in the morning I am so tired. I usually feed Amelia, eat breakfast, pump and then have to go back to sleep. Jackie watched Amelia while I napped this morning. I also got really tired this evening and took a nap from around 5pm-7pm while Amelia slept.

My eyes are feeling pretty dry and scratchy. I have a small sore on the right side of my tongue.

My sinuses are much much clearer than they were a couple of weeks ago. My ears don’t hurt and feel clear.

Dr. Staecker Again

Dr. Staecker did not need to scrape my ear b/c the drops had loosed and removed the middle ear effusion. Dr. Staecker wants me to keep him informed about my condition b/c the KU system is slow in sending out follow up reports. He seemed less than thrilled with the idea of putting me on cytoxin. He suggested that there might be other newer and less toxic drugs to try. Dr. Staecker said that he wasn’t a specialist in Wegener’s, but he does have several Wegener’s patients. He urged me to contact him at the first sign of hearing loss b/c that often indicates the start of a flare up.

Meeting Dr. Awadh

The prednisone has helped my arthritis vastly. I am able to move my hands and fingers again. Also, walking is easier although my ankles and feet still hurt somewhat. Stairs are difficult. I am too weak to walk very far with Amelia in my arms.

Saw a rhuematology fellow named Dr. Awadh (and his attending Dr. Lindsey) who asked me about my past history and said he thought I had WG also. Dr. Awadh ordered more blood work to see if the Prednisone had reduced the inflammation, my blood creatine level and other autoimmune labs. He also ordered a CT scan of my chest. He wants me to have either an open or VAT lung biopsy to confirm the WG diagnosis.

Although my urine test doesn’t show an elevated creatine level (meaning I may not have kidney involvement), Dr. Awadh suggested that I be placed on Cytoxin for 3-6 months and then switch to Metheltrexate. I asked if we could delay starting treatment for 2 more weeks so I could b reastfeed Amelia until she is 3 months. Dr. Lindsey said that I had been sick for such a long time that 2 weeks shouldn’t make much of a differnce. I scheduled an appointment for 07/30/07 to discuss test results and start treatment.

The CT scan of my chest was very difficult. I had to hold my breath while the machine was taking pictures which led to coughing fits. One of the techs said, “How long have you had that cough?” I told him I’d had it for about 6 weeks, but had also had it of and on for the past couple of years.

Visit with Dr. Staecker

My arthritis has progressed to the point that walking is difficult. I cannot straighten my elbows or use my hands well anymore. In the morning my mom or Ross has to help move me into position to breastfeed Amelia. I cannot scoot myself back into a sitting position on the bed or really even get her head in position because my hands and wrists are so weak and painful.

Saw Dr. Staecker who confirmed Dr. Burroughs assessment that I had WG. He contacted the KU rhuematology department and got me scheduled for a visit on 7/16/07. He put me on 20 mg of Prednisone 2x daily and Nexium. He also ordered some bloodwork.

Dr. Staecker also tried to scrape the middle ear effusion out of my left ear which caused me so much pain that he had to stop. He prescribed Floxin drops to loosen up the debris and scheduled a follow up visit in 1 week to check on it.