Saturday, April 21, 2007

Spring has sprung!

It is nice to experience the first day of spring (no matter what the calendar says). It's been cool/cold/rainy/windy for way too long. I don't know it felt like it was in the 60's. At least that would have been a sign of spring. Today it hit the mid 70's and is gorgeous out. It is nice to not have to wear gloves and a coat.

Here's to more of this great weather!

Monday, April 16, 2007

Prescription plans - PITA but we need them

In previous posts, I mentioned how expensive at least 1 of the medications I'm on costs. Good think I have a prescription plan. What is inconvenient is that my prescription plan requires us to mail in to fulfill prescriptions that go past 3 initial months. That means a new prescription for each medication needs to be obtained. But what used to be a simple call to the drug store now requires advanced planning (14 days or so) and any modifications require another printed prescription from the Doctor, another form mailed in, etc.

As previously posted, my CellCept was upped from two pills twice daily to three pills twice daily. That's a 50% increase. My last prescription was for 4 pills a day so they sent me a 3 month supply (4 pills x 30 days x 3 months = 360 pills shipped). Well after that was filled, my prescription changed to 6 pills per day (6 pills x 30 days x 3 months = 540 pills needed). So instead of a 3 month supply, I now had a 2 month supply. And you can't have them ship the next 3 month supply early. So a new prescription is mailed in and I'll receive (hopefully) 540 pills before my current 360 pills runs out.

Now to get a new prescription for the Ibuprofen before that runs out early.

Tuesday, April 10, 2007

My first cold (sniffles)

Start the end of last week and into the weekend I got a good head cold. Stuffy nose, post nasal drip, etc.

Called down to Johns Hopkins to see what I could take since this is the first time with any problem since I started the heavier duty meds in January. Dr Wigley replied back that I could take an over the counter medication but be aware that meds like Sudafed will aggravate the Reynaud's.

My wife gave me two Benadryl pills before bed last night and it seemed to help a lot. My hands are cold today but i think that has more to do with the unseasonably cold Spring we're having. It will only be in the upper 40's today and it is supposed to be in the 60's. Come on spring!!

Thursday, April 5, 2007

Visit #3 to Johns Hopkins

Yesterday I had my 3rd appt with Dr Wigley at the Scleroderma Center at Johns Hopkins in Maryland.

My wife and I drove down late in the morning, ate some crab cakes for a late lunch and went over to the center for a late afternoon appt. We drove back home after the appointment.

When the Dr walked in, I said 'Give me some good news - you found a cure.' He then discussed some cases with people he is treating that have it more advanced then I do and the more radical treatments they are using that are showing promising results. But, in my case, and my age (I am relatively young) he would be more concerned about the longer term effects of those treatments. I have to tell you I've never been so relaxed around a doctor as I am with Dr Wigley. He's so knowledgeable and comfortable in explaining things at a level you can understand (even with as low an IQ as I have).

We reviewed the medication I am on, which the Dr pretty much had memorized, and then we discussed how I feel. It is hard for me to be overly optimistic on how I feel because it constantly changes often many times throughout a single day. But overall, I had to say I am feeling a bit better. The pain in the left leg is, at least for now, all but gone. They could still feel the fibrosis though when they examined me. The pain in my right leg is also less then it was. I still have the creaky door syndrome in my forearms but that isn't a source of any real discomfort. There is a new drug coming out of the research phase he estimates in 4 months that has shown to be a very effective drug to treat fibrosis so there's something to look forward to, though I'd rather it just go away on its own!

They checked out my skin tightening over my body which they have a rating system for. 0 means no involvement, 1 means some involvement, 2 means more, etc. I don't know how high the number goes up to but I know it is above a 2. Between my abdomen and thighs it 0 - no involvement. my hands and forearms and lower legs are a 1 - some involvement. My chest is a 2 and the tightest part but it doesn't really bother me too much. The really good news is there appears to be no further tightening since I was last there. For the skin tightening, I can actually feel it as it was happening and I haven't felt it occurring.

We talked about my lungs which is always a problem area for scleroderma patients and my last test. One part of the test showed a variation from the previous one, though nothing drastic. Most results actually showed the same or better then the prev test. The doctor asked that I get another CAT scan of my lungs to double check.

I have blood taken every 2 weeks to make sure the main medication isn't causing any obvious problems and so far it has been fine. He said after the next test to go every month instead since my body is tolerating it well.

I will stay on the same medications and dosage and will head back there in two months for another follow up visit. Just for one of the medications I take, the monthly cost, if I didn't have medical benefits, is $930 per month or $11k per year. It costs me $25/mo. For a guy that never was sick, I guess the insurance plans are hating me now!

All in all, positive news and the doctor is pleased and still very optimistic.

Sunday, April 1, 2007

This week - visit #3 to Johns Hopkins

This Weds I head back down to Baltimore with my wife for my 3rd visit to Dr Wigley at the Johns Hopkins Scleroderma Center. At this very moment, if I had to state how I feel, it's "better". Hopefully it will continue.

My in-laws are coming up on Tues for Easter which is great since we don't need to worry about the kids getting home from school while we're down in Baltimore.

My poor wife has been in Baltimore since Fri evening because one of my daughters has a competition there. My daughters team came in first place again!! They drive home tonight and then we need to drive down on Weds. We won't stay over since it's a later afternoon appt. She's putting in the miles again, mostly because of my daughters competitions.

I am looking forward to Wednesday's visit!