Saturday, April 29, 2006

4/28 No Surgery, Just More Time

Visited with the ENT guy who said Josie's sinus infection is pretty bad but it didn't need any surgery. So he sent us on our way with a new antibiotic formula. Josie has been hacking some huge coughs over the last week. Sounds really uncomfortable but she doesn't seen too phased by it.

Her attitude, however, has turned from pretty marginal to down-right Sybil-like. She's been getting worse and worse since we started up with the higher doses of steroids a while back. Now she will not do very much for me at all. Deb is haveing to bear the full brunt of this as Josie demands to be with her, and cared for by her, and everything by her almost always. It's only when Josies's in the best of moods when she'll allow me to do much of anything with her.

So, we'll just hang in and keep tabs on her progress. Hopefully the medicine will take care of the sinus infection and we can move forward.

Wednesday, April 19, 2006

4/19 Things Are Getting Way Worse - Relapse City -

Rosey CheeksThings are moving in the wrong direction! After months of snail-paced progress, Josie has relapsed back to early September condition. This is bad news.

Josie's been battling what has now been determined to be a deep sinus infection. Now, this wouldn't normally be a problem but it appears that seems to be the root cause of her relapse.

We've been told time and time again to be VERY careful about infections. The theory goes like this...when and infection flairs up...of course the body wants to attack the infection. Fine, this is normal and a great thing. But with autoimmune diseases where the immune system is not working right and attacking the good body parts, an unrelated infection can cause the immune system to react in an undesirable manner. It seems that while trying to attack this sinus infection, Josie's system has decided to start attacking her muscles and skin again with more ferocity.

Vasculitis So, as a result we've stepped back eight months or so. Josie's skin has flared up. You can see the rosy cheeks in the above picture. Her eyes and trunk are showing signs of more involvement too. Josie's strength is way down. She can no longer take any stairs. On a good day she might be able to go up one stair without a rail but it's with a lot of effort.

Now it's off to see a new doctor for the sinuses. We're seeing an ENT guy referred to us through Dr. Vehe's office. Dr. Vehe think he might recommend surgically cleaning out the sinuses to help speed the infection recovery. After that then we can start attacking the Dermatomyositis again.

We've upped the dose of steroids again and she's becoming a little less cooperative taking her medicine...and there's lots of it. We've also begun weekly pulse infusions of IV steroids too in hopes of getting it back under control.

Sunday, April 02, 2006

4/2 Mayo Visit

On March 29th We were off to the Mayo Clinic and the results were...well...about what we expected.

We visited with Dr. Ann Reed for a consult for Josie's tough case of Dermatomyositis. We discussed her condition and course of Josie's disease experience along with a ll the drug treatment, progress and setbacks, drug regimen and everything. It was a good discussion, but at the end of it all there was really nothing new which Dr. Reed had to add.

This, of course, was good news in that it more or less confirmed that Josie is getting great care and about as good as we could wish for, though it's not silver bullet of a cure we were wishing for.

The bottom line was that we should continue with the treatment laid out by Dr. Vehe and continue to be patient. The Rituxin treatment is still pretty fresh and the benefits of that may not become apparent until later.

The visit itself was enjoyable. About a 90 minute drive from our home, the Mayo Clinic is in Rochester, Minnesota. Josie's appointment was in the main clinic building, which is quite a place. Hopefully there will never be a need for any of you to visit the Mayo Clinic, but if you do, it's quite a sight.

Josie was crabby during the visit, but what else is new. Before we visit any doctor we try to get a clear understanding with Josie on how we're going to act, but usually those agreements are disregarded and forgotten when the doctor waltzes into the room. Josie usually clams up and many times comes completely unglued and throws a fit which makes most examinations a little challenging. This time was no different. She didn't really go ape, but she was surely not very cooperative either.

Dr. Reed was most pleasant and took all the time we wanted to ask her question and to discuss all the treatments we've done so far. She said that nothing we've done so far is unreasonable and is in-line with how she might treat a case like this. Again we were informed that Josie's case is on the nasty side -- not the worst ever seen but not good at all.

So there it is. More of the same, and hopeful for progress, though not much progress has been made lately.