Summer 2011 Update

All of my father's tests came back negative. They eventually diagnosed him with BOOP, which is more of a description of symptoms than an explanation for what is wrong. In other words, "They have no idea." They put him on Prednisone, which seemed to fix his lung problems, but caused all sorts of other problems such as muscel weakness and pain, shaking, severe mood changes, insomnia, etc.

Then my dad's GP reduced his dosage of Prednisone and my dad's joints "locked up". Even after weeks on the reduced dosage, he was unable to move. I think the reduction in Prednisone was too fast, but the GP said that is the schedule he always uses. He tried to make the taper longer, but my dad kept getting "locked up" and the GP would have to raise the dosage again. This went on for months until the GP eventually referred my dad to a rheumatologist.

The rheumatologist said that he had very rarely run into patients who just had a terrible time gettnig off of the Prednisone and suspected that my dad had the same issue. He tried to put my dad on azathioprine as a replacement to the Prednisone, but it caused abdominal swelling and liver toxicity. The doctor obviously took him off of that immediatly.

The rheumatologist then just set a really really slow taper schedule and after about a year, my dad was able to get off of the Prednisone. It was a really bad year though. I think my dad's health is not as good as it once was and we still don't know what happened.

In other news, I am doing very well. My baby girl is now a 4 year old preschooler. How time flies!

When I was very ill with the Wegener's and immunosurpressed, being able to travel seemed like something I might never be able to do again. I regretted that my husband and I had not ever gone on a cruise and that I had never seen Alaska. I am more than happy to say that we have an Alaskan cruise planned for next month to celebrate our 10 year anniversary. I can't wait.

Ups and Downs

Everyone recovered from their colds. I saw Dr. A again a couple of weeks ago and he dropped my prednisone down to 5mg. I didn't really have any side effects from that. He also raised my methotrexate to 17.5, which has made me feel a little worse. It gives me headaches and some more nausea. Dr. L told me to double my folic acid the day I take my methotrexate and the day after. I don't really think that has helped much though.

All in all, I think I am doing really well. Dr. A said I could get out more and didn't have to be so restricted with being in public like I was on the Cytoxan. So a few days ago I decided to take Amelia into the grocery store to pick up some formula. Of course, she spent the entire time running her mouth all over the handle of the cart. I couldn't stop her. I was just thinking, "Well, this is going to make her sick again. We're all going to end up with the flu!" Of course her nose started running yesterday and she is cranky. I am hoping it's just cause she is getting a new tooth (her 6th one!)

Nails Again

I'm down to 10mg of Prednisone. Every week the drop makes me feel a little bad (headache, nausea) for a couple of days, but then I recover.

Although, I have actually been doing a pretty good job not biting my nails, one of them got infected again. My pinky nail broke off and I really don't even remember biting at it, but I must have. In any case, Dr. Awadh had given me refills on my Augmentin prescription and so I got it refilled. I've been taking it for over a week and it makes me feel pretty bad. I've been sick to my stomach and have lost my appetite some. Losing my appetite is a good thing I guess, since I've gained so much weight on the prednisone.

At least Miss Amelia has been sleeping though the night again. :)

Ick

Having some problems with the prednisone taper maybe. I dropped down to 15mg yesterday and have had a headache and been nauseated and fatigued all day. .. oh and cranky. Hope I feel better tomorrow. :(

Out and About

My mom and I went out to lunch today and then I spent a gift card I had gotten when Amelia was born for The Children's Place. I got 5 long sleeved onsies for her and a jacket to take to Boston. I figure it's going to be colder and I didn't think her summer dresses were going to cut it. We had a great day.

Ross had to work late tonight so I took Amelia over to my dad and Linda by myself tonight. I wanted to get over there and have them see her before we went to Boston so it wouldn't be a month between visits. They are over-the-moon about her. My dad was really proud because he was able to put her to sleep when Linda couldn't.

My dad also said he thought my moon face was looking thinner. I am down to 25mg of Prednisone a day, so that might be true. I hope so, but I think I look pretty fat. Ross calls me 'Prednazilla'. I am worried that about what his family in Boston will think, but being fat is better than being dead. :) I am happy that I haven't been suffering any ill effects from the Prednisone taper yet. People on my WG Yahoo board generally seemed to do well tapering until they got to about 5mg though.

Oh, and I'm doing really well with my nail biting. I painted them last night and they almost look normal again. I think they next time I paint them they will actually be looking good. :)

Dr. Awadh Appointment

I saw Dr. Awadh today. My WBC is 6.8, which is still pretty reasonable. He is going to leave the Cytoxan at 200mg daily for another couple of weeks. I am supposed to drop the Prednisone to 30mg daily and switch it all to the morning dose starting tomorrow. I don't know how that is going to go. Last time I switched to taking my Prednisone all in the morning, I felt really awful. He said if I am miserable to do 20mg in the morning and 10 in the evening. We'll see how it goes.

Dreams

I had less nausea today which was good, although I was still pretty tired. I fell asleep rocking Amelia down for her nap. I went to bed really late last night and then didn't sleep well. I have been having bad dreams. They aren't quite nightmares, but are just unpleasent. I dreamed that there was a stain on a dress I couldn't get out and my mom was too busy to help me. I felt really frustrated. They have all been sort of like that. I read that Prednisone could cause bad dreams, so maybe that is it.

Prednisone Taper

I thought I felt a little more cruddy today. My ankle is hurting somewhat and I just felt sort of blah today. I wonder if that is from the reduction in Prednisone starting last night.

I also noticed that I have a sore on my tongue like I had a few months ago before I was diagnosed... another sign that the Cytoxan isn't really working yet.

I'm up way too late and really tired, but trying to get my nails painted. They had gotten really chipped and I start picking at them if they aren't perfect.

Tired

All I can think about is how tired I am, which I suppose is good. The prednisone isn't giving me insomnia tonight. Goodnight.

Good Weekend

It was a really nice weekend.

Yesterday morning Ross and I went back to our house and gathered up a few more things to bring to my moms. We also got my car so I will be able to drive myself to my labs. I am hopeful that I will stay feeling good enough to be able to do that. The Cytoxin has made me a bit nauseated everyday around noon, and I would say I have been getting progressively more tired each afternoon. However, I have been doing tons of Amelia's care on my own and have been really active, so some of my fatigue might be from that. Today was actually the first time I have had to nap in about a week.

Last night Robin and Adam came over and we had a fantastic time. They brought pizza. I made bubble tea and we talked for several hours while Jackie and my mom looked after Amelia. As much as I hated to quit breastfeeding, it was pretty nice for someone else to be able to feed her while I talked with my friends.

The prednisone is making my face look awfully round and fat. They call it 'moonfaced'. I am also getting more facial hair. Ick. Well, since dog training is out for a while, maybe I can apply for a 'freak' position at the state fair. I don't think that requires anything more strenuous than smiling politely at people.

Jagged Little Pill

I started taking my Cytoxin today.

I woke up and nursed Amelia for the last time. Ughgh. So sad...

... and then took all my pills. I have to take 3 Cytoxin pills because they are 50mg each and I have to take 150mg each day. I also have to take my morning prednisone, Bactrim, calcium and a vitamin. At night I take a prednisone and a Nexium. I can't believe how many pills I am taking.

I felt a little nauseated before lunch, but the Cytoxin didn't seem to effect me too much immediately. I am really tired right now too, but my sleep is so disrupted that it is hard to say what that is from.

I have almost gotten all of my medical records ordered. I think it's going to run me about $50, but other WG patients suggested that it is a really good idea to keep a personal record of them. Since the WG goes into remission and (hopefully) doesn't flair back up for years at a time, it is hard to remember what happened the last time. It is good to have a record of what led to what and what medication, tests, etc were ordered.

I have been pretty sad and moody today. I read that stopping nursing can bring on a bit of mild depression for a few weeks. It's hard not to get a hit of oxytocin every 3 hours. :) Anyway, as Ross said, "It isn't as though you don't have anything to feel sad about. You mood is in line with your situation right now. I agree. It's been a bummer of a day.

Hungry Hungry Hippo

I just finished eating some ice cream and magic shell for a midnight snack.

The prednisone is making me crazy hungry. It is really hard not to have any sense of if I really need to eat or not. I am hungry before I eat, and stay hungry while I'm eating... sometimes I think about what else I can eat while I am in the middle of dinner. After I've eaten, I'm still hungry. Ughghgh.

Breastfeeding burns like 500 calories a day and since I am quitting tomorrow, I am going to have to really start being more restrictive about what I'm putting into my mouth. I almost think it would be worth it to 'pump and dump' just to burn the calories.

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. 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.