mariposa13
Member
- Joined
- Aug 9, 2017
- Messages
- 10
- Reason
- PALS
- Diagnosis
- 03/2017
- Country
- US
- State
- TN
- City
- Nashville
Hi!
I was newly diagnosed in March 2017, but problems started around Aug or Sept 2016. So I'm less than 1 year in and doing ok for now, but yes, I'm declining.
Anyway, I was hopeful to go to my 2nd ALS clinic visit because I thought I could get Radicava. My clinic date was 8/4. My doctor said I don't qualify because my FVC decreased to 66%. Back in March I was 81%. He says you have to be at 80% or higher to get the drug.
So very disappointing! Has anyone else experienced this???
I tried to look for the requirements on the drug and did not see that listed in the prescribing information. It does mention that the clinical trial participants were required to be 80% or better, but I don't see anything in writing to state that is now a stipulation to receive the treatment.
I'm going to have someone call Searchlight support to ask about this.
My doctor is absolutely NOT helpful. I've been to ALS clinic twice. He has no bedside manner. All doom & gloom. We don't need that! I'm requesting my medical records so I can try someone else. I don't want them to say I'm going to be fine - I understand what's happening here, but at least have a heart.
I was newly diagnosed in March 2017, but problems started around Aug or Sept 2016. So I'm less than 1 year in and doing ok for now, but yes, I'm declining.
Anyway, I was hopeful to go to my 2nd ALS clinic visit because I thought I could get Radicava. My clinic date was 8/4. My doctor said I don't qualify because my FVC decreased to 66%. Back in March I was 81%. He says you have to be at 80% or higher to get the drug.
So very disappointing! Has anyone else experienced this???
I tried to look for the requirements on the drug and did not see that listed in the prescribing information. It does mention that the clinical trial participants were required to be 80% or better, but I don't see anything in writing to state that is now a stipulation to receive the treatment.
I'm going to have someone call Searchlight support to ask about this.
My doctor is absolutely NOT helpful. I've been to ALS clinic twice. He has no bedside manner. All doom & gloom. We don't need that! I'm requesting my medical records so I can try someone else. I don't want them to say I'm going to be fine - I understand what's happening here, but at least have a heart.