Saturday, February 28, 2009

Dizzy, a Spot in the Eye & Yet...

I have always been one who has been use to being very strong. I never throw up, I have always had a lot of strength and I have never fainted. For the last couple of days I have felt very weak and twice now I have gotten very light headed and almost fell down. Tonight I was feeling so light headed that I pulled over and had my (amazingly beautiful) wife drive us home… just to be safe. I’m not sure what is causing this, (perhaps a cold?) but I hope to resolve it shortly. It could be related to lowering the medicine… I’ll have to keep an eye on it.

Speaking of eyes…. I noticed a little while back a spot in my vision. I was really worried about it and had it checked out by and eye doctor. They said not to worry but to watch it and make sure it doesn’t get bigger. The strange thing is that it comes and goes. Some times I don’t notice it at all and other times it comes back. I’m wondering if anyone else has experienced this either because of Sarcoidosis or perhaps Methotrexate, or Prednisone. Anyone else experiencing this?

On the upside the pain has gone down a bit, even though I did a lot of walking during the day. This is GREAT news! I was taking Aleve in the mornings because of some Bursides that was bugging me, but decided to not take it today. I was thinking that the Aleve was actually masking some of the pain I was feeling and was worried that I was really going to feel it today. Boy wasn’t I pleasantly surprised because my feet and legs felt much better today. I am hoping that this is an indication of my body adjusting to the lower Prednisone and that I can keep on my path of reducing the dose while still keeping the Sarcoid under control. =)

Thursday, February 26, 2009

The pills for the Methotrexate have really been better than the shots, despite the fact that the pills are supposed to have worse side effects. I’m really doing a lot better on Sunday’s now after taking the medicine. The drawback is that the dosage is cut way down. With that and now with the lower dose of Prednisone (12 mg) I am feeling some pain in my ankles at different times of day.

The Prednisone comes in 2.5 mg doses so I take 1 in the morning, then 2 at lunch and 2 and dinner. I can really tell a difference between the time I take 1 and when I take 2. I have tried shifting the schedule and taking 1 in the morning seems to work out the best. You would think that I would hurt more in the morning more because it has been so long since I took my last dose… (6 PM to 6 AM) but it is better this way then taking the one lower dose during lunch or at dinner. My guess is that it has more to do with how much I am on my feet then how long it is between doses. I think I might split up the doses, taking one 2.5 mg pill every 3 hours starting at 8:00 AM. That would spread the dosages out much more evenly through the day, but it would be much more of a hassle. Also I am worried about taking it so late at night as it makes it hard to sleep. I’ll have to think about that more.

The biopsy is still bothering me. The swelling hasn’t fully gone away yet and it sometimes hurts when I breath deeply or and laying down. I’m not sure I would have done it knowing what I know now. Doctors really tend to play things down. I wonder if they would be so ready to do surgery if it were going to be done on them.

Over all I am a little concerned about the pain I am having. The current medicine is just barely keeping it under control, but that is only if I stay off of my feet. I am hoping that my body will adjust and it won’t be so bad, but if not I don’t think I will be able to lower the Prednisone in a month when I am scheduled too. For now I’ll have to wait and see, I’m just glad I’ve dropped down so far on the Prednisone. =)

Sunday, February 15, 2009

Methotrexate Blues

Oh man! Last weekend was murder with the Methotrexate. It was almost pure torture.Over the past month I have gotten sicker and sicker every time I take the stuff. When it came time to take it last weekend I almost threw up just thinking about it. It make me feel extreme nausea along with flu like symptoms that you feel everywhere in your body, even in places like your earlobes! It is hard to explain, but the only thing I can relate it to is the feeling of being poisoned! It devastates me for over 24 hours and then I feel the residual effects for days! It got to the point that I was done! I just wasn’t going to take it anymore!

Luckily I had a doctor appointment already setup this week. I talked to him in depth about how I was feeling and he was really surprised. He said that about 10% of people have this kind of reaction, and in all the people he has treated I was the only one who has had this strong of reaction. I asked if there was anti nausea medicine I could take and he said that he never treats side effects of one drug with another. I thought that this sounded like sound advice. He suggested that we try switching to the pills and cutting the dose down. I was hesitant to ever try it again, but after he assured me that we would simply stop if I had the same reaction I agreed.

Well last night I took the pills and have done considerably better. I still feel some of the effects, but not nearly as bad and the nausea is greatly diminished and I have been able to manage it. The strange thing is that I have a close friend who was taking the pills and had a ton of side effects, so she switched to the shot and has done much better. Her experience is almost exactly opposite of mine. This just goes to show that everyone is different and what may work for one may not work the same for another.

My doctor also reduced my Prednisone again. I am now down to 12.5 mg per day from 15 mg. The side effect from the Prednisone have reduced to the point that I can really manage them and I feel like I have full control again, although I do notice I get the shakes really bad if I take it late. I told my doctor that I wouldn’t mind maintaining the Prednisone at this level for a while (15 mg) but he told me that at this level the Prednisone was still doing bad things to my body, such as robbing calcium from my bones among other things. He said the he wouldn’t feel comfortable with doing that until we got down to around 5 mg. The goal thought is to get off Prednisone all together. I am noticing pain in my joints just before I take my next dose, but not too bad. I have done this a little every time I have reduced my levels of Prednisone while my body adjusted, although this time it is a little worse. I am hoping that my body will adjust quickly and that I won’t go backwards.

The doctor also put me on one additional medication. It is called Colchicine .6 mg. (Don’t worry, I can’t pronounce it either.) This is typically used for gout, but can help Sarcoidosis. I have also felt some sore pain in my hips and knees which he diagnosed as bursitis. This medicine should help this as well as taking Aleve.

Man, with all of these pills I feel like my grandpa! So I am taking Methotrexate, Prednisone, Placquinel, Colchicine, Folic Acid and Aleve. Nothing like a fist full of pills! Ha!

I gained a little more weight again, so that now I am back to what I was before I started losing weight last year. I am really frustrated with that! I talked to the doctor about what exercise I can do and he was really concerned about any weight bearing exercise, even something like walking. Given my illness and what some of the medicine is doing to my bones he suggested that I either do swimming or bicycling. I don’t have a pool or a exercise bike so I’ll have to see what I can do. I know my wife would love it if we got a pool! =) he he, but I don’t think that is in the budget.

The incision from my biopsy has healed up nicely, but it has some swelling around it still. This has begun to be bothersome in the middle of the night and I am finding that it makes it hard to breath at times. If it continues to be a problem or gets worse I will have it looked at again.

All in all it has been a rough go, but I am still very pleased that I am still going down on the Prednisone. I feel that despite the rocks I am still making progress.