Or as I am now calling it, my kind of hell. Day 9, and I still feel like complete garbage. Nausea, vomiting and exhaustion, oh my. I wasn't expecting the switch to take so much out of me, or to react so miserably to the new med. I've been doing my best to "tough it out". If I fail Myfortic, there is only one medication option left to try to control my AIH.
Humira and prednisone have been my lifesavers, even if now, my Crohn's is rebelling. I have started with pain in my ileum again, and now pain in my descending colon, which was inflamed during previous colonoscopies. Another big concern, is that I'm now going into 4 months on prednisone. My bones are not thrilled, nor are my docs. I will be on prednisone until at least October, making close to six months on a substantial dose. In. October, when we reevaluate my treatment plan, I will also be having a DEXA scan. It's also scary to think about what will happen to my Crohn's, when the prednisone is discontinued. It definitely has been helping to keep thing under control, even if I am currently having breakthrough.
For now, I hope and pray that the Myfortic works, and works well. Fingers crossed.
Sunday, August 24, 2014
Saturday, August 16, 2014
balancing
This past Wednesday, I met with my liver and GI docs. My LFTs refuse to normalize, and are still elevated. I was already on the highest dose of azathioprine that I could be on, so it was decided to switch me to another immunosuppressant, Myfortic. It is similar to CellCept, a more commonly used immunosuppressant, but is coated, and is easier (hopefully) on the stomach. Myfortic isn't as safe as a drug as Azathioprine, and comes with more side effects. Our goal is to get my LFTs normal, and maintain normal while getting me off the prednisone.
Luckily, the Crohn's is behaving, for the most part. It will be interesting to see what happens with the switch, as azathioprine is commonly used to treat Crohn's, while Myfortic/CellCept haven't. It will be interesting to see what role, if any that azathioprine has had with controlling my Crohn's. Hopefully for my sake, it has played a minimal role, so that nothing changes with stopping it. We are also nervous for when I decrease the prednisone, as that most certainly has had a therapeutic effect, on both Crohns and AIH.
My life at this point is a balancing act. Trying to stay upright, on both feet has been a struggle, and not without consequences. I have traded away my life in order to stay healthy.
Luckily, the Crohn's is behaving, for the most part. It will be interesting to see what happens with the switch, as azathioprine is commonly used to treat Crohn's, while Myfortic/CellCept haven't. It will be interesting to see what role, if any that azathioprine has had with controlling my Crohn's. Hopefully for my sake, it has played a minimal role, so that nothing changes with stopping it. We are also nervous for when I decrease the prednisone, as that most certainly has had a therapeutic effect, on both Crohns and AIH.
My life at this point is a balancing act. Trying to stay upright, on both feet has been a struggle, and not without consequences. I have traded away my life in order to stay healthy.
Monday, August 11, 2014
Normalcy
Just hit 3 full months on prednisone. Have a minimum of 3 more months on it, and that's only if my LFTs stabilize. It will much likely be longer than that. I'm slowly starting to see the full effects of my total immunosuppression. Cuts, scrapes, blisters, all take so much longer to heal. I used to heal wonderfully, with few scars. Now, my body is riddled with small scars, from what previously would of healed perfectly in a couple of days.
I've gained ten pounds. I'm in amazement that even with maintaining 10mg of prednisone, I have only gained ten pounds. While I'm trying my best to keep the weight gain at a minimum, I'm happy that so far, so good. It is a constant uphill battle with prednisone, to keep the weight off. Previously, and again in this round, much of it is water weight. I feel so puffy and bloated.
The scary part of this new normal, is that I've yet to hit true remission. I had bloodwork done last week, and will be getting the results Wednesday. As of two weeks ago, my LFTs were still climbing, even with being on the maximum dose of azathioprine, and 10mgs of prednisone. I think a part of me is afraid of the long term implications. I hate that there is no end in sight of being on the prednisone. I'm worried about my bone health, and well overall health stemming from long term use. I'm anxious to see why my blood counts are at, with my previous blood work showing substantially lower than average white blood cell counts.
I want remission. I know I will never be med free in my life, (unless they find a cure), but I want to reach a point where I don't have to worry about bone loss. Where I don't have to worry about getting sick constantly, where I can start to think about getting pregnant, where I am not on three different types of drugs that all independently shut down my body's immune response, not to mention being on three at the same time.
This new normal, while slowly getting to be familiar, is not okay. I'm not content. I hate feeling so run down physically that I barely have time or energy to eat dinner when I get home from work. I hate how I feel, and am scared to death of the long term effects of these medications on my body. The fear alone is more than enough to hate this new normal.
I've gained ten pounds. I'm in amazement that even with maintaining 10mg of prednisone, I have only gained ten pounds. While I'm trying my best to keep the weight gain at a minimum, I'm happy that so far, so good. It is a constant uphill battle with prednisone, to keep the weight off. Previously, and again in this round, much of it is water weight. I feel so puffy and bloated.
The scary part of this new normal, is that I've yet to hit true remission. I had bloodwork done last week, and will be getting the results Wednesday. As of two weeks ago, my LFTs were still climbing, even with being on the maximum dose of azathioprine, and 10mgs of prednisone. I think a part of me is afraid of the long term implications. I hate that there is no end in sight of being on the prednisone. I'm worried about my bone health, and well overall health stemming from long term use. I'm anxious to see why my blood counts are at, with my previous blood work showing substantially lower than average white blood cell counts.
I want remission. I know I will never be med free in my life, (unless they find a cure), but I want to reach a point where I don't have to worry about bone loss. Where I don't have to worry about getting sick constantly, where I can start to think about getting pregnant, where I am not on three different types of drugs that all independently shut down my body's immune response, not to mention being on three at the same time.
This new normal, while slowly getting to be familiar, is not okay. I'm not content. I hate feeling so run down physically that I barely have time or energy to eat dinner when I get home from work. I hate how I feel, and am scared to death of the long term effects of these medications on my body. The fear alone is more than enough to hate this new normal.
Monday, August 4, 2014
Four
Last week marked my fourth hospital visit this year. I noticed changes in my urine, and felt out of it, and had an abnormal temp. Called my doctor early Monday morning in hopes of getting an office visit with him, but instead was politely told by the nurse to go to the ED, which is in the same healthcare system as my doc. My doc and the colleagues from his practice do daily rounds at that hospital, so with any visit, if need be, they can consult almost immediately.
Lucky for me, it's new resident season, and I had the joys of having a brand new shiny doctor, who confused autoimmune hepatitis with hepatitis C more than once. Don't get me wrong, I have many friends and colleagues that are physician, and typically have the utmost respect, but if you want to work in an ED, be sure to know the difference between viral and autoimmune diseases.
She ordered an ultrasound, for gallstones, even though I told her numerous times I had my gallbladder removed, and imaging done to ensure I had no stones in bile ducts previously. The ultrasound, showed an enlarged heterozygous liver, indicative of liver disease. No surprise there. She ordered only a basic hepatic panel and CBC and let me go after filling me 2000ml of fluid.
Unfortunately, I had missed the rounds of the liver team at this point, and was told that I was merely dehydrated and to follow up with my liver doc as scheduled, and get blood work again this week. My LFTs are still climbing back up, even with the increase of azathioprine. I'm anxious to see the results this week. I also was frustrated at her telling me that I need to drink more water. I have Crohn's disease. I can drink a gallon of water a day and still be dehydrated and it's so incredibly difficult to stay hydrated. I left upset, and frustrated and just done.
This incident is why I hate going to the ED/ the hospital. I spent over 8 hours in a gown in an uncomfortable bed, only to be told, follow up with your main doc. Back in March, while in severe pain, when my gallbladder wasn't functioning- I was told to follow up with my primary doc. I feel that having such a rare combo of diseases, or hell having either one, is typically way more complicated than what a typical ED doc can handle. It's why we see specialists in the first place. The ED is one of the worst places to get care for chronic diseases, yet any times we are forced to go there when our docs are not available. My friends and family sometimes insist for me to go when I don't feel well, or symptoms are amiss. I wish it was as simple as walking into the ED and having a medical problem solved, but unfortunately, it's rarely the case. It's frustrating, painful and wasteful in my opinion, and it really reiterates my dislike of rushing to the ED to get checked out.
Lucky for me, it's new resident season, and I had the joys of having a brand new shiny doctor, who confused autoimmune hepatitis with hepatitis C more than once. Don't get me wrong, I have many friends and colleagues that are physician, and typically have the utmost respect, but if you want to work in an ED, be sure to know the difference between viral and autoimmune diseases.
She ordered an ultrasound, for gallstones, even though I told her numerous times I had my gallbladder removed, and imaging done to ensure I had no stones in bile ducts previously. The ultrasound, showed an enlarged heterozygous liver, indicative of liver disease. No surprise there. She ordered only a basic hepatic panel and CBC and let me go after filling me 2000ml of fluid.
Unfortunately, I had missed the rounds of the liver team at this point, and was told that I was merely dehydrated and to follow up with my liver doc as scheduled, and get blood work again this week. My LFTs are still climbing back up, even with the increase of azathioprine. I'm anxious to see the results this week. I also was frustrated at her telling me that I need to drink more water. I have Crohn's disease. I can drink a gallon of water a day and still be dehydrated and it's so incredibly difficult to stay hydrated. I left upset, and frustrated and just done.
This incident is why I hate going to the ED/ the hospital. I spent over 8 hours in a gown in an uncomfortable bed, only to be told, follow up with your main doc. Back in March, while in severe pain, when my gallbladder wasn't functioning- I was told to follow up with my primary doc. I feel that having such a rare combo of diseases, or hell having either one, is typically way more complicated than what a typical ED doc can handle. It's why we see specialists in the first place. The ED is one of the worst places to get care for chronic diseases, yet any times we are forced to go there when our docs are not available. My friends and family sometimes insist for me to go when I don't feel well, or symptoms are amiss. I wish it was as simple as walking into the ED and having a medical problem solved, but unfortunately, it's rarely the case. It's frustrating, painful and wasteful in my opinion, and it really reiterates my dislike of rushing to the ED to get checked out.
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