Thursday, May 28, 2009
Update for (Prescription) Writer's Block
Just wanted to let you know that my neurologist, Dr. Beall, has decided to appeal the decision my insurance made to not allow me to take the Betaseron. I don't know if it'll work, but we are trying. If not, then I guess I will be trying the Avonex. During this little escapade, I found a forum with message boards thru the MS National Society website called MS World. The people on there were very helpful to give me some perspective on the different meds and what is worth fighting for and what may or may not work. Every MS patient is different and responds differently. So, I am going to see how this plays out and go from there. I will let you know as soon as I hear anything. What's a little more time right? Staying positive, hopeful and laughing as I fall down! :)
Tuesday, May 19, 2009
(Prescription) Writer's Block
Where to begin...hmmmm.... Well, as you all know, Dr. Beall prescribed Betaseron injections for me to give myself. Finally, the prescription was called in and the company BetaPlus (formally MS Pathways) contacted me. They were SO NICE!!! They contacted my insurance to find out what it will cost me to fill the prescription per month. They also informed me there will be no maximum cut-off to the benefits and no deductible. That the medicine is mailed to me and I can determine if I want a 30 day or 90 day supply.
Then, they assigned me a BetaPlus nurse, her name is Linda (good name, huh, Mom?). She contacted me, also, VERY NICE!! She informed me that my prescription was being filled by a company called Optioncare and once they contacted me, then she would call me back. She told me that she was my 24 hour a day, 7 days a week link to help and support for the Betaseron shots as well as any questions regarding my early stages of MS. She sent me a start up kit with an instructional DVD as well. She said once I had the medicine, she would come to my home and train me how to give myself injections. So I waited.
The instructional kit came on Wed. May 13th and I watched the DVD. Had a little panic attack about giving myself the shots, but I know the anxiety will pass once I have been doing it for a while. Still freaky, but I will deal with it to have the medicine. On Thursday, May 14th, I called Linda back to tell her no one had still contacted me from Optioncare. She gave me their number and said if I had any problems, then she would be my muscle. :)
So I called Optioncare and was told they were still waiting for approval from my insurance. So, being pro-active, I called Blue Care Network myself. I was told they were still reviewing my claim and had 24-48 hours before they had to reach a decision. Here are my first pangs of doubt. So I had to wait til Monday to hear. No phone call.
Tuesday, today, I called BCN to be informed that I needed to try another drug before they would approve this one. Isn't that a kick in the teeth? Some stupid bureaucratic person in an office somewhere, gets to tell me I can't have the medicine I want. Not my doctor, but someone who has never met me. And it gets better, they say if I try the medicine and it doesn't work for me, THEN I most likely would be approved for the Betaseron I wanted to begin with. So, I need to put another medicine in my body, experience it's side effects, which I was already told weren't a good fit for me, by my doctor, and then go thru it's withdrawals to get what I wanted in the first place. Poetic, isn't it?
I am told I can issue an appeal, along with my doctor, for the reasons I need this drug imparticular and why the other one is not good for me. I don't know if that will be supported by my Dr or not. I put a call in to one of his nurses telling her why I wanted the Betaseron over the Avonex. She said she would start working on the process of helping me. I told her I wanted Dr. Beall to write an appeal for the drug, not only for the lesser side effects we already discussed, but for the support system. That to me is invaluable! I could have someone, outside of my very busy neurologist's office, be there for me any time of day or night. Instantly.
Frankly, Dr. Beall could say I need to try the Avonex first. It was one of the drugs we discussed. He told me because it is injected only once a week, most of his patients are laid up for two-three days experiencing flu-like symptoms. While the Betaseron, breaks down the same dosage over the whole week, so the symptoms are greatly reduced. Every week down with the flu... Is that better than where I am at? I don't know.
The nurse I spoke with said she is seeing the insurance companies denying more and more recommended drugs in the last year than she ever has. That she feels it is unfair to the patient. I agree. I am not going to break down over this. I am going to fight to try and get the drug I want until they tell me I can't. I've waited this long, so I guess I can wait a little longer. I may have to withdraw my earlier challenge to the bridesmaids and dancing circles around them. However, the prescription writer's block better be up for the challenge of me. Watch out!!
Then, they assigned me a BetaPlus nurse, her name is Linda (good name, huh, Mom?). She contacted me, also, VERY NICE!! She informed me that my prescription was being filled by a company called Optioncare and once they contacted me, then she would call me back. She told me that she was my 24 hour a day, 7 days a week link to help and support for the Betaseron shots as well as any questions regarding my early stages of MS. She sent me a start up kit with an instructional DVD as well. She said once I had the medicine, she would come to my home and train me how to give myself injections. So I waited.
The instructional kit came on Wed. May 13th and I watched the DVD. Had a little panic attack about giving myself the shots, but I know the anxiety will pass once I have been doing it for a while. Still freaky, but I will deal with it to have the medicine. On Thursday, May 14th, I called Linda back to tell her no one had still contacted me from Optioncare. She gave me their number and said if I had any problems, then she would be my muscle. :)
So I called Optioncare and was told they were still waiting for approval from my insurance. So, being pro-active, I called Blue Care Network myself. I was told they were still reviewing my claim and had 24-48 hours before they had to reach a decision. Here are my first pangs of doubt. So I had to wait til Monday to hear. No phone call.
Tuesday, today, I called BCN to be informed that I needed to try another drug before they would approve this one. Isn't that a kick in the teeth? Some stupid bureaucratic person in an office somewhere, gets to tell me I can't have the medicine I want. Not my doctor, but someone who has never met me. And it gets better, they say if I try the medicine and it doesn't work for me, THEN I most likely would be approved for the Betaseron I wanted to begin with. So, I need to put another medicine in my body, experience it's side effects, which I was already told weren't a good fit for me, by my doctor, and then go thru it's withdrawals to get what I wanted in the first place. Poetic, isn't it?
I am told I can issue an appeal, along with my doctor, for the reasons I need this drug imparticular and why the other one is not good for me. I don't know if that will be supported by my Dr or not. I put a call in to one of his nurses telling her why I wanted the Betaseron over the Avonex. She said she would start working on the process of helping me. I told her I wanted Dr. Beall to write an appeal for the drug, not only for the lesser side effects we already discussed, but for the support system. That to me is invaluable! I could have someone, outside of my very busy neurologist's office, be there for me any time of day or night. Instantly.
Frankly, Dr. Beall could say I need to try the Avonex first. It was one of the drugs we discussed. He told me because it is injected only once a week, most of his patients are laid up for two-three days experiencing flu-like symptoms. While the Betaseron, breaks down the same dosage over the whole week, so the symptoms are greatly reduced. Every week down with the flu... Is that better than where I am at? I don't know.
The nurse I spoke with said she is seeing the insurance companies denying more and more recommended drugs in the last year than she ever has. That she feels it is unfair to the patient. I agree. I am not going to break down over this. I am going to fight to try and get the drug I want until they tell me I can't. I've waited this long, so I guess I can wait a little longer. I may have to withdraw my earlier challenge to the bridesmaids and dancing circles around them. However, the prescription writer's block better be up for the challenge of me. Watch out!!
Brain Haze
Sorry for the delay everyone, but I have gotten quite the runaround lately. I finally had my steriod infusions on May 6th, 7th, & 8th. At first I was extemely wired and had bursts of energy. I still was losing my balance and feeling weak in my arms and legs. By Mother's Day, I began to experience, what I can only describe as a drug induced haze. Everything I experienced was a contridiction to another feeling. I was in a lot of pain, but everything felt numb. My vision was blurry, but colors and things appeared brighter and surreal. Every sound was amplified, but I couldn't focus on what was being said to me. As if people were speaking a foreign language. I felt completely overwhelmed and lonely. It was pure insanity. I likened it to some sort of side effect to the steriods since nothing else had changed. This lasted almost exactly 48 hours.
Then for the next three days I experienced extreme exhaustion. I slept as much as I could. On Thursday, May 14th I began to feel some improvements. I felt a little more "normal". This has only been a fleeting feeling, as it comes and goes. I still have been losing my balance, tripping and experiencing the weakness & numbness. Had some tremors over the weekend as well. So, not totally sold on the steriods yet, but they said the benefits may take longer to show themselves, so I am still giving the infusions the benefit of the doubt.
Once I see Dr. Beall on June 16th, I will question if the crazy, drugged effects are normal or not. Then we can decide if this seems to be the right choice for me. I have enough of my own issues without adding drug trips to the list. Brain haze is not a side effect I want to keep!
Then for the next three days I experienced extreme exhaustion. I slept as much as I could. On Thursday, May 14th I began to feel some improvements. I felt a little more "normal". This has only been a fleeting feeling, as it comes and goes. I still have been losing my balance, tripping and experiencing the weakness & numbness. Had some tremors over the weekend as well. So, not totally sold on the steriods yet, but they said the benefits may take longer to show themselves, so I am still giving the infusions the benefit of the doubt.
Once I see Dr. Beall on June 16th, I will question if the crazy, drugged effects are normal or not. Then we can decide if this seems to be the right choice for me. I have enough of my own issues without adding drug trips to the list. Brain haze is not a side effect I want to keep!
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