General Update and Dental Issues

So I have not been feeling very well...what else is new. Even though I am back on steroids, I am still symptomatic. And in addition to the normal symptoms I also have tons of side effects from the steroids. For instance, I have bad heart burn, anxiety, weight gain, and inability to control my body temperature all from Prednisone. The weight gain has been from being on steroids on and off for the past 7 years and is without a doubt the worst side effect of all. I don't even recognize myself anymore. I look into the mirror and the person peering back is a stranger to me. It is so difficult to not have control over the weight gain.

In addition to the significant flare up of oral apthous ulcers, which are extremely painful, I am now dealing with severe dental problems as a result of a medication called Actiq. Actiq is a fentanyl based pain mediation in the form of a lollipop. I have been taking this medication for approximately four years. Of course since the medication is slightly sweet, you assume there must be a little bit of sugar in it. However, there is no warning label/pamphlet regarding the high level of sugar that is in each actiq lollipop. When you take this, you hold it between your cheek and your back teeth. The sugar pretty much rots your teeth regardless of how much you brush and floss. Since there was no warning regarding the potential adverse affects of this medication on your dental health, I did not worry. I am now having to deal with the serious affects of Actiq on my teeth. I have a huge number of cavaties and have already had one of last teeth on the upper left extracted. Two of my teeeth have chipped at the gums, both bottom teeth on the right and left (very last molars). It is not typical decal that you would see in someone who eats a lot of sugar or has poor dental hygiene, which I do not. Instead of having cavities at the top of the tooth, the teeth are decaying from the bottom up....in other words, there is a gap between the gum and the tooth. This is causing EXTREME pain. I have been informed that I am in need of AT LEAST $10-12 K worth of dental work done in order to begin to correct the damage done by this medication. For the past year, I have been lucky to find a compounding pharmacy that makes Actiq for me sugar free, so I don't have to worry about future damage. But it is so difficult to have to deal with this issue on top of everything else that I am coping with. And knowing that it could have been prevented is extremely frustrating. I was informed that the pharmaceutical company that makes Actiq did have a sugar free version but took it off the market. That is rediculous to me. I have done extensive research and have found hundreds, if not thousands, have reported similar stories to mine. They all have severe dental issues resulted from Actiq. Some people have had all their teeth removed. And these are just the people who have reported it on online forums. This does not include the number of individuals suffering from the same problem who have NOT reported it.

I am normally not afraid of medical tests, dentists, doctors, etc. But due to the oral ulcers and the severe pain caused by them, I am terrified to go to the dentist today. I don't know how I am even going to get through the x rays because I am in so much pain. Not to mention the amount of pain I am in from the two affected teeth. The pain has spread into my jaw, ear, and head. I am currently on an antibiotic, as I was worried about potential infection so I contacted my dentist over the weekend. Anyway, I am very anxious because people with Behcet's have difficulty with dental visits because any slight trauma to the mouth (sharp instruments poking areas of the mouth) will cause a huge increase in mouth ulcers and flare up. Given that I am already in a bad flare up, I am scared that it will get so bad from the dentist visit that I will have to be hospitalized. I am trying to relax and calm myself down and have faith that I will get through this, because I know I always do. It just gets a little exhausting having to constantly deal with different medical issues. If it's not one thing, it's another.

I am awake in pain from my mouth ulcers, but mainly because of the excrutiating pain in my lower jaw. It is throbbing with pain. I am going to try and get some sleep, but I will keep you all updated on the dentist appointment. Not looking forward to the many dentist visits I will likely have in the near future. Nor do I know how we are going to finance these dental procedures. It is unfair that I have these costly procedures all because of the negligent individuals who make this medication.

As always, I am going to try and remain positive and hopeful. I know I can get through this. I have no choice but to get through it with as much optimism as possible. I will come out on the other side even stronger than I am now. If you are dealing with something difficult in your life, try to think about all the positive aspects, even if it seems there are not any positive aspects at all. There is always something good that can come from a situation. We do not have control over the events that happen to us in life, but we do have control over how we respond to these events. Therefore, we need to capitalize on the control we do have. Having a positive perspective can help us grow and become better individuals. It will also attract others. We know that positive people are easier to be around. I always say that positivity gains momentum and attracts other positive people. When we attract positive people and include them in our lives, they will in turn assist us in remaining optimistic when we are having a diffficult time. So keep your chin up, everyone! We can get through these challenges and persevere!

Thanks for reading.