roseanne
Forum Replies Created
-
The support group that I go to had a rep from Acorda the pharmaceutical company that makes INBRIJA come to our meeting to talk about the drug. It is an oral inhalation form of levodopa. It comes in a capsule that you put in the inhaler. Then you inhale it through your mouth. One of the ladies in the group uses it and she said its a powder and that it took her a couple of times before she got used to the feeling of the powder. But she said it was helping with off times for her. I’m not sure what the cost was but I will ask her when I see her and report back.
-
I usually just say “I’m good, how are you doing”?
I also haven’t told anyone other then my kids and my parents. And I don’t think my parents really understand parkinson’s because whenever my mom sees my tremor in my hand she will say to me when are you going to go to the doctor and get that fixed. I have to laugh to myself because I wish it was that easy to fix. My parents are in their 90’s and I’m the one taking care of them so I don’t elaborate about what I’m going through because I don’t want them to worry about me. I haven’t told anyone at work because I feel like people would look at me differently. And I haven’t told any friends or my siblings either. I guess its just kinda hard to start that conversation.
-
Every Victory Counts from the Davis Phinney Foundation. The book is free. You only pay $5.50 for shipping
-
I was diagnosed in April 2017. I was very reluctant to taking any medications after reading all the side effects?. After about 6 months I started with Azilect 1mg daily because my doctor says that it might slow down the progression of parkinson’s. My doctor then convinced me to start Amantadine 100mg twice a day. It seemed like every visit she was suggesting another drug to take. And even when she gave me the prescription it would take me a month or so to actually start the medication. (I’m a problem patient?) I was afraid to start carbidopa/levadopa because of the fear of dyskinesia. But my tremors were getting so bad I agreed to start pramipexole ER 0.375mg 3 times a day. I have been on that now about 1 year. I have been having a big problem with fatigue. Yesterday I started Rytary 23.75/95mg 3 times a day while tapering off the pramipexole. Yesterday was a great day. I felt great, no fatigue, tremors felt better. So far today no fatigue, but not doing so well with the tremors. But it is also thanksgiving and I am having all 4 of my kids and their families over for dinner. I tend to get very anxious on the holidays and when I’m anxious nothing will control my tremors. So I will have to give it another couple of days to see how it works. Hopefully it will help. Sorry for such a long post. It feels good to be able to talk to someone about this.
-
I think I would be afraid to take it because if the quality control issues and possible drug interactions with the other meds I’m taking. I would have to discuss it with my doctor first and I’m positive she would say no. I tried CBD oil and the chewable gummies and got sick, so I’m very cautious about taking anything. I didn’t discuss the CBD with her first.
-
I started xadago with free samples from my doctor but then found out that my insurance wouldn’t cover it because it was a new drug. It would have cost me $2300 a month. I wasn’t on it long enough to notice a difference.