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.

Crazy News

So my dad has been struggling with pneumonia for the past month or so. He recently ended up in the hospital because he wasn't getting better and now they are telling him that he may have Wegener's too. I can't even wrap my mind around this. Wegener's isn't actually hereditary, so this is soooo weird. Maybe we were both exposed to something? Maybe it isn't really Wegener's that he has. They did a lung biopsy and a C-ANCA but the results aren't back yet. We'll know more later this week. Wow. Just, wow.

And Done.

I am officially in remission. Whoo-hoo! I am off of the methotrexate and not exhibiting any Wegener's Symptoms. It has been a very long time since I have felt so healthy. I was sick for so many years without knowing what was wrong before I was diagnosed. It is amazing to wake up and be able to walk without arthritis, to feel 32 years old instead of 82. It is a delight not to have a constant cough and runny nose. I am so happy to be able to go through a day without taking a nap (or two).

Now that I am off of the prednisone, I have been able to loose 25 pounds of the 50 pounds I
gained during treatment. I have been following the weight watchers program and have no doubt I'll soon be back at my normal weight.

Good luck to anyone out there who was diagnosed with this awful disease. Know that it is possible to get into remission and one day stand on the other side again.

Dropping the Methotrexate

Finally, finally Dr. A is dropping my Methotrexate dossage. I am down to 5 pills every Sunday night and will drop to 3 pills a week soon. Hopefully I will officially be in remission by Halloween.

Peripheral Vision

After all of the poking and prodding that I have gone through, I think one of more unpleasant tests is totally non-invasive. It is a test of your peripheral vision. You have to look with one eye into a box and then press a button whenever a tiny dim light appears. This goes on for several minutes and is very stressful. I'm good at test taking, but I have serious anxiety with it. I am always thinking, "Did I really see that? Oh no.. Did I miss one?"

In any case I am happy to report that my peripheral vision is still okay. I have to have it checked every 6 months or so because my pituitary involvement. Apparently the optic chiasma is near the pituitary so they think the WG lesion might spread there. All is well for now at least. :)

Off the Prednisone

Whoot! I am finally off of the prednisone. I took my last dose in January and have been doing pretty good since then. Lately I have had some joint pain especially in my wrists and fingers, but Dr. W (standing in for Dr. A) didn't seem too concerned. Dr. A is having visa problems or some such and can't seem to get back in the country. He's been gone at least 4-5 months. They hope he'll be back by my appointment in May. In any case, Dr. W says that he will start dropping my methotrexate at the next visit too. I am excited about that so I don't have to be so worried about getting sick all the time.

I should mention that I've lost about 10 pounds since last summer too. It has been slow going, but I am keeping at it. I think it will be easier now that the weather is getting nicer and we can start walking after dinner again.

Dr. A Visit

Dr. A has finally returned from the Cleveland Clinic. I am really happy he was able to go. I actually felt like he was more confident and capable during my last visit than he has ever been before. He is thinking about specializing in Wegener's and even talked about working with another specialist from St. Luke's to do a study on Wegener's.

My foot x-rays came back normal as I expected, but I am still having quite a bit of pain at the end of the day. My labwork is looking really good as far as being in chemically induced remission goes. He is dropping my prednisone to 2.5mg, which is exciting. I can't wait to get off the prednisone. Also, he looked at some of my chloresterol numbers and they aren't too bad. My LDL is 108, which would be great if I was a normal person but WG is sort of a risk factor so he would like it below 100.

The only bad thing was that my weight had gone up so much. I have gained almost 50lbs in exactly 1 year. That is a frightning 1 lb per week. Now, I know that 1) a year ago I had a lot of unexplained weight loss from the WG so gaining some of that back was too be expected and 2) most of the rest of it is from the stupid prednisone, but now that my dose is lower I really feel that I should be able to loose it. I sort of think I have picked up a lot of bad habits in the meantime though. Since I am always hungry and never satisfied, I just eat because things taste good... which means I can eat an enormous amount of food without ever getting any signals from my brain that I'm full. Also, the diabeties insipidus causes me to obsess about drinking so I end up drinking alot of calories (Oh my gosh! I really need to drink a glass of pomagranate juice right now!) I don't fit into any of my clothes anymore. :( Well, better than the alternative, right?