Sunday, April 26, 2009

Imuran, Cancer & Messing with DNA

Well I am feeling a lot better. The pain in my joints has all but gone away, although I am not sure why. At first I thought that it was the Imuran, but I’ve been doing a little reading up on the drug and it should take a number of weeks before the benefits are felt. I am also concerned because it turns out that Imuran increases your risk of skin and other cancers, something I really don’t want! Sarcoid is bad, but cancer is MUCH WORSE!

So the question is, if the Imuran isn’t really providing any benefit yet, and if I am doing better this week than last week do I really need to be on the Imuran? (Especially with the increased risks of cancer)

I am also concerned that Imuran gets down into your DNA. I haven’t been able to find anything on how permanent this is. If I stop taking Imuran does my increased risk for cancer go away? I’ll have to find out more information. I don’t want to trade Sarcoid for cancer!

Have to figure this one out.


Sunday, April 19, 2009

The broken glass is back!

Doah! I’m feeling the pain in my ankles and knees again. The side effects from the Methotrexate have been so bad that I have finally come off it, and today was an AWESOME day! Normally the Methotrexate just wrecks me for two days and feel terrible, but apparently it did a lot in helping the pain from the Sarcoidosis. I would have normally taken the Methotrexate on Saturday night, but this is the first week I haven’t and I am really feeling the Sarcoid pain. It is such a mixed bag. It’s like you get to pick your pain… Isn’t there a “No Pain” option? Doah!

The hope I am holding on to is that I am in an in-between spot with the medicines. I have been lowing the dose for Methotrexate for a while to where it was barely helping and now I am off of it. My new medicine hasn’t ramped up yet and needs some time to take effect. I am really hoping that the Imuran will give me the benefit of the Methotrexate without the side effects.

I am starting to see two possible outcomes here. The one I am hoping for is that the medication will put the Sarcoid into remission and I will be able to get back to “normal” life. The second is that I will need to choose between the effects of Sarcoid and the side effects of these drugs. If it ends up being the second I don’t know which options I’ll pick. Whether I choose medicine or just to deal with the illness I will be facing long term negative impacts on my health. I’m not sure which I will choose, but I am leaning to just dealing with Sarcoid and taking IB. The prednisone not only makes me fat, but messes with my mind and the Methotrexate knocks me down like crazy. I think at this point I would almost rather deal with the pain. Hard to say… I hope I don’t have to make the decision in the end.

For now I’m just going to wait and see if the Imuran helps and what side effects it ends up having. I have to give it a chance to start kicking in and build up in my body.

Guess we will see. =)


Ps. I hope that this pain is mainly because of the amount of work I did yesterday.

Saturday, April 18, 2009

You get some, You lose some

I saw my doctor again and filled him in on all of the drama with the kidney stones and the dizziness. He found it very difficult to believe that the calcium would have caused these problems this quickly. He told me to discontinue taking the calcium supplements just to be safe but he still wants me to take the Fosomax.

We discussed the Methotrexate again. He asked how it was impacting me and I told him that I missed Easter with the kids because I was down in bed. He was really surprised and told me that I was on a child’s dose at this point. He told me that he didn’t think that this low of a dose would really provide any help and if it was causing me so many problems to discontinue it. (OH YAH!) I can’t tell you how happy this makes me! I am so excited to have my weekends back! Many people take Methotrexate without much of a side effect, but for me it has been hideous! I am so excited to be off this stuff and am looking forward to actually being able to feel good at church again! I’m really looking forward to tomorrow.

I have been feeling pain in my ankles and knees just as it comes time to take my medications again, so he didn’t feel like we could lower the Prednisone. I’m really okay with that because the Prednisone is at a low enough dose that it doesn’t affect me as badly as it has in the past. Although I do hope by next month’s appointment I’ll be able to reduce it another 2.5 mg’s.

We think that the reason I am feeling the pain is because the Methotrexate levels are getting low enough in my body that it isn’t really providing the benefit it did in the past. Instead he has prescribed a new medication called Imuran, or Azathioprine (50 mg). It is an immune suppressant that is used for organ transplants, inflammatory bowel disease, ulcerative colitis, multiple sclerosis, autoimmune hepatitis and autoimmune disease such as Sarcoidosis. Here is a link with more information:

It looks like the side effects aren’t too bad, or at least better than Methotrexate as long as you are not on it for a prolonged period of time. I have taken it for a few days now and I really haven’t noticed anything bad. I am still in the ramp up time though. It is strange. You take 1 tablet per day for a week and then you start taking it two times a day. I’ll let you know in a week or so if I start seeing any bad side effects.

All of the kidney pain is done! Yeah!! I don’t really believe in home remedies, but I found one for kidney stones that even doctors were recommending. (This works primarily for kidney stones made of calcium.) You take 10 lemons and squeeze out all the juice (about 2 cups) and drink it all down at once! Yup straight, no sugar. It wasn’t nearly as bad as I thought it was going to be and it didn’t actually taste half bad. You just have about 15 different after tastes that hit you like waves. Anyway, after that you drink normal lemonade about every hour. The acid turns the stones in to a substance similar to gummy bears. Soft and squishy is WAY better than sharp and pointy. It just comes right out and doesn’t hurt! It was awesome! Check it out on Youtube, they have a bunch of videos on it. Glad to be done with it and I’m going to remember the lemon juice for the future.

Lately I have really been feeling weak. Doing the smallest things knock the wind right out of me. This morning after I slept in I was sitting in the shower feeling bad for myself. I was really sick of watching my house turn into disrepair around me because I don’t have the energy to tackle it. I finally reached a point where I couldn’t take it anymore, so I said a short prayer asking for strength, then got out and charged headlong into the day’s chores. We raked up a ½ acre yard, burned all of the debris, worked on my car that broke down, fixed some parts on my truck, hauled a bunch of junk to the dump, then took the family out to Pizza! And you know what… I really don’t feel that bad. In fact I am feeling strong! It was an amazing day. Now don’t get me wrong, I am nowhere near back to full strength but I really did a lot today and it didn’t knock me down! I hope I can keep this going. I’ll let you know.

Here is hoping.


Wednesday, April 1, 2009

Dizziness and Calcium?

Well, the old phrase “This too shall pass” is true! Ha Ha! I think I am past the worst of the kidney stones, however a strange thing happened to me. Today I started getting really dizzy all of a sudden and it wouldn’t go away. I have never felt this way before except when taking Lortab or spinning around in circles at an amusement park. I actually felt like the room was spinning around me to the point that my eyes almost started twitching. At first I thought it was because I was low on food, but the problem continued even after a hardy lunch. Strange!

Luckily I was able to get an appointment with my doctor today and you won’t believe what it turned out to be. Yup you guessed it… It is Benign Paroxysmal Positional Vertigo (BPPV)! Or… perhaps you didn’t guess it, but you won’t believe what it is. It’s rocks in your head! Seriously! Here is a picture. The bottom line is that little rock like deposits (otoconia) form in the part of your inner ear that governs balance and mess with your senses. And guess what these little rocks are made of. “…small crystals of calcium carbonate…”

So just after I began taking the Calcium supplements and the Fosomax I got kidney stones (made of calcium) and BPPV (crystals made of calcium). My doctor wanted me on the calcium to prevent the Prednisone from robbing the calcium from my bones, but I can’t continue with these problems. I think I am done with the calcium supplements unless my doctor can help me not have these side effects.

Turns out that BPPV is only temporary and should go away quickly. Strange, strange, strange!