Saturday, January 10, 2009

Getting There… More Progress

I had another meeting with my doctor who was very pleased with the progress I have been making. I haven’t had any swelling in my joints and have been making good progress. I am feeling a bit of pain just before I take my Prednisone and Plaquenil but it is very minor and goes away quickly. My doctor has increased my Methotrexate to help off set this, but has told me to take the Prednisone for two more weeks at 20 mg and then lower it to 15 mg. I started at .5 ml of the Methotrexate, then went to .6 as I continued to reduce the Prednisone, and now will be at .8 ml. With being at .8 ml the doctor has had me start taking Folic Acid, which is one of the B vitamins. The Folic Acid helps offset some of the side effects of Methotrexate. (See earlier post for links on Methotrexate)

I can’t tell you how happy this makes me that I am lowing the Prednisone. I am very excited to see progress here! The biggest thing I am finding is a tremendous amount of relief from the Prednisone side effects! I am way more patient and actually find that I want to be around my kids again. =) I have lots less aggravation, I am sleeping well at night and am feeling myself again. When I was on higher does of Prednisone I didn’t feel like myself. It’s hard to explain, but I was someone else. A very… uh… blunt someone else. Also my thinking has calmed down, and I don’t feel like my mind is always racing. All in all I am really enjoying the reduction in side effects. The Prednisone is effective in getting rid of the pain and treating the sickness, but the side effects are something to deal with!

I finally setup a meeting with another pulmonologist. I have notice a few times while I have been lowering my Prednisone that I have had a hard time breathing. I haven’t had another chest X-Ray and am very interest in seeing the results compared to the previous ones. It isn’t until later this month so I’ll have to wait and see.

All in all I really feel like I am moving forward. I am still cautiously optimistic! =)

Sunday, January 4, 2009

Prednisone, Leg Cramps and Weight… going… going…



My Doctor has been having me lower my Prednisone dosage over the past few weeks. I have been at 40 mg which has been very hard on me. I have really struggled with the side effects including weight gain, strong changes in my mood and aggravation levels, etc etc (see previous posts), so I was very excited to cut down. I have been really worried that the same thing that happened last time might happen again, eg. The pain came back and I had to up the dose again, but so far so good… no GREAT! I cut down to 30 mg and there was some pain, but it subsided and everything seemed to be good, despite the fact I got a cold at the same time. I am now down to 20 mg and again after a short adjustment period things appear to be going well.

I am VERY hopeful that we can keep on this path! Getting off the Prednisone is important to me, I really can’t stand the stuff and what it does to me. I have already noticed a big difference in my thinking, my patience levels and my aggravation levels have gone way down. It’s almost like sitting in a large hot tub and feeling yourself relax. Ahhhh!

The foot and leg cramps have subsided, although I don’t know for sure the reason. I could guess that it is because I am lowering my Prednisone, or that I am eating potassium (Bananas etc.), or because I am making sure I keep my legs and feet warmer at night. Whatever the reason I’m grateful for it. I can still feel them on the edge of cramping if that makes sense, but if I quickly stretch them out there isn’t a problem. Good improvement anyway.

I am completely feed up with the weight gain and fat redistribution that the Prednisone causes. I have been casually fighting it up to this point but just finding the energy to get up and go to work, being a dad of 6, a husband who matters, a scout master and just a human being who doesn’t snap at everyone has consumed most of my mental capacities up till now. At the beginning of last year I started at 285 LBS and started exercising and eating better. I got down to 240 LBS (45 LBS!) and was feeling great still moving forward when I got sarcoidosis and started the Prednisone. My weight has slowly climbed due to reduce activity, continual hunger, bad eating habits, etc, until I reached 265 LBS! My cloths aren’t fitting well, as you can imagine, and I am not feeling well with all this extra weight. I’ve had it, and am feeling well enough to get serious about this so I have started back on my original eating / exercise program. I’ve got to be careful to not over do it on the exercise especially as I am cutting down on the Prednisone, but so far so good. I have lost 5 LBS and am at 260 LBS right now.

If all goes well, and if I can stay on this path then I think I’ll be in a good place in not tool long!

Again, I am cautiously optimistic. =) Wish me luck!