Wednesday, March 28, 2007

Follow-up PFT today - no change

Had a follow-up PFT today at the local hospital. My previous Pulmonary Function Test was last November. It's the only test you actually have to do anything for. The rest you just lie there, get poked or drink various substances. This one is more like a game.

I must have been the 1st test today since the tech had to calibrate the unit using what looked like a giant bicycle pump. I told her we could be out of here real quick if she just used that for my test.

Did the typical breathe normal, in and out, part and then the deep breathe, hold it, blow out hard part. She compared my results from the previous test and said it looks like the results are the same. So I guess that's my good news for the day!

Friday, March 23, 2007

Now I'm asking myself - any change yet?

For a week, it felt like my hands were becoming less sore. Yesterday and most of today though, they felt "less good" though tonight they feel less sore again. I've been on the cell cept for about 10 or 11 weeks now and I was hoping it would kick in by now. I haven't even told my wife my hands were feeling better because I don't want to get her hopes up. These past 2 days were a disappointment but maybe just a temporary one.

Come on scleroderma, cut me a break! Let me feel better. Let me feel something good. Let me actually be able to answer someone, when they ask me "any change yet?" that "yes, I feel better".

Tuesday, March 13, 2007

Any change yet?

I get asked "Any change yet?" at least once a day by someone. The good news is that in the past month or so, there's been no change for the worse. It is very hard to get excited about anything I might consider an improvement as I don't know if it will last. This scleroderma is a tricky disease to understand.

Monday, March 5, 2007

Wow, are my Scleroderma meds expensive!

My prescription plan changed the beginning of the year and I can no longer just go to my local pharmacy to have my prescriptions filled. After the initial and follow-up refill for a prescription, I now need to mail in for refills for a 3 month supply. It is a real PITA that has pros (saves the company money) and cons (hurts the local pharmacy), but I won't talk about that now.

When I went to the pharmacy, there was just my co-payment for the 1 month prescription. I never actual saw the cost of each med. With the mail-in, when they send the medication, they send a sheet showing what the co-pay was and the total cost. I was blown away.

I'm on Cell Cept to address the immune system. My last prescription which I mailed in was for 2 500mg tablets twice a day (4 pills per day). The cost of my co-pay for 3 months - $75. The cost of the meds for 3 months - $1,800! Now my dosage was increased but after I mailed in the last prescription. I'm now on 6 pills per day (a 50% increase). That means my Cell Cept cost for 3 months is $2,700 or $900 per month.

That is $2,400 just for 1 medication! This Scleroderma can get expensive! I'll follow-up with other costs as I get them from the info provided on the refills.

Thursday, March 1, 2007

Does one pain override another pain?

My shins have been really bothering me lately making the walk to/from work the most uncomfortable part of my day. From what my doctor has told me, the pain is caused by fibrosis of the tendon associated with the scleroderma.

I was wondering as I was walking in, if the pain in my shins stopped, would anything else hurt? Is the pain I'm feeling overriding the pain I had before and that pain will return or is there no pain in other areas?

I guess I'll have to wait and see what happens when my shins stop killing me.