AP pulse dosage

[Melanie]

Thanks, Jeff. Yep, I'm trying to keep a positive attitude. I know that helps in so many ways. My hands, too, seem to be my worst aggravation. They're either too cold or too hot. Feels like I have bone spurs on both my thumbs. The skin on all my fingers is really thick and sore when mashed. Has anyone ever had an orthopedic dr look at their hands or fingers to give opinons?

[jeffn]

I went to an ortho doc before my DX when they thought I had carpel tunnel. I have not been back to one again though. Might not be a bad idea for you. Find a good one and try a visit. Maybe you could find one that is SD familiar. I wonder if they would send you to PT or OT? How is the swelling in your hands? I have some of the thick skin going on my middle and index fingers but the swelling which I think was causing most of the pain is long gone. When the swelling went so did the "hands in a bucket of broken glass" feeling. No more sausage fingers! The remaining thick skin is not very much of a problem in my case. Yes I would rather not have it but it does not limit my range of function very much. My fingers are still somewhat sensitive but nothing like before. I'm thinking they are probably 85% or better - maybe 90.

[Melanie]

Thanks, Jeff. I'll let everyone know what the doc says about my fingers and hands. Sure would be nice to see some improvements with the thick skin. I can't really say they are swollen - just thick and hard. A friend of mine felt of my thumbs and said it felt like the soles of her feet after being barefoot all summer.

[Cubby]

EWA and MELANIE: I haven't been on here in a while. We were in Delaware for a month, then some of the family came home with us. Soooo finally getting settled in.

I took the brand name Minocin, 100 mg 2 x a day. Although I noticed very slight improvement within a month, some don't notice any changes for a few months. Even tho I had a minor improvement in a month, it was a very slow process, but well worth it!

About 2 years ago, I went down to 1 Minocin (100 mg) once a day and that worked. I tried to go even lower (down to 50 mg) but my hands and feet started burning, so I went back to the 100 mg.

I am fine everywhere. My doctor will not say the word REMISSION, but esentially, I am in remission. HOWEVER, my fingers remain slightly curled from the middle knuckles to the distal tips. They do not hurt at all and are fully functional except I have to be careful picking up large bottles and things like that as the curling sometimes causes me to drop things.

But, small price to pay. Other than my hands, if you met me today, you would never know that I was given a death sentence in 2005. I also do another treatment with the Minocin, called Photopheresis.

[grammie]

After two and a half years on mino 2x a day, I KNOW I have improved....no question in my mind or my doctors. So hang in there folks, it will get better. I've even been dismissed from my pulm. doctor! He is beginning to believe in AP for he is so pleased with my changes.

I do get a stomack ack once in awhile and find it is often because I didn't drink enough or have had dairy too close to mino. Two crackers do help, as does more to drink. I often drink it with deluted ginger ale.

So do hang in there folks. It takes time but does get better.

grammie