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Tysabri to Gilenya?

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    #16
    Medicare Prescription Plan Restrictions

    Scooter & Shalimar - thank you for the responses. Scooter you must not be on Medicare because it disallows drug companies from offering any discounts or help paying for the drugs. Medicare sees it as unfair, preferential treatment. Shalimar, that's why I was surprised that you could find a Medicare Plan D provider where the 3-month prices were so low. I know each insurance co charges different co-pays and annual premiums and I've yet to find one where Gilenya is on the formulary - maybe because it is so new. Again, thanks for your replies.

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      #17
      Another option... switch to Liberation Procedure!

      This is probably not the best place to post this, but I too am on Tysabri and will be going for #14 in Dec. I recently attended a local meeting of people who had the Liberation Procedure done and almost everyone is planning to go off their medications because they are doing so well. I too, don't want to switch to Gilenya, because of all the nasty issues associated with it. So, I've decided I'm going to see if I have CCSVI and if so, get treated for it. Then, since you have to have the "washout" period anyway, I'll just do a "wait and see" period and see how things go. I was on Copaxone initially but after a year, I had 7 active lesions, so I don't know that it would be worthwhile to go back on that, but that would be the only drug I'd want to go back on. I can't do the interferons as my liver enzymes went crazy after only 3 months. We're stuck between a rock and a hard place, aren't we?

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        #18
        guicci-Are you sure about your post, my mom is on medicare and recieves co pay assistants on ALL of her meds except the cheap generics. She actually rcvs one free of charge.
        Plan for the future, but not too hard; it’s not your decision anyway

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          #19
          My neurologist has told me for years including my visit with him last Monday, that Medicare strickly forbids pharmaceutical assistance because of equality issues and I swear I checked it out a couple of years ago on the Medicare site - BUT HE & I ARE WRONG! There is the PAP program listing on the Medicare site now. When did that change, I haven't a clue. THANK YOU FOR QUESTIONING THIS!!! I will write a letter to my neurologist so he will quit telling his patients they cannot get help from the drug companies. BLESS YOU

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            #20
            Very glad to help! It upsets me that people don't apply for this assitance as dr's don't tell them or they just think they don't qualify. now make sure you call as I know they will help (my sis works there and she has given me that info.)
            Also go to this web site and apply, they allow up to 7 times welfare income rate theassistancefund.org
            Plan for the future, but not too hard; it’s not your decision anyway

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              #21
              Originally posted by LL60 View Post
              I just got home from going to a MS thing they had. It was for southern CA sponsered by the South Coast Pacific MSS. They talked a lot about Gilenya. Wow. Whoa. No thank you. Tysabri seems tame after listening to what they said about Gilenya. BUT....they did talk about how good of a drug for MS it is. They said all the new drugs coming out were like that - very very good, but with very very bad side effects.

              What's a person to do?

              I just had #18 on Tysabri. And I am just staying on it. All the data from the JCV studies aren't out. My doctor isn't even testing until it is. I wouldn't take it even is it was. What are you going to do with the informaiton. Even a negative doesn't mean you will stay that way. A kid at the mall could sneeze on you tomorrow and pass it along. (if a sneeze will pass it along, you know what I mean)

              And Gilenya is a whooping $40,000 a year. (so they said today) Pretty soon only weathly people will be able to be treated.
              So what are the very bad side effects you have heard about Gilenya? I did 24 infusions of Ty then took the "vacation" to avoid the possible PML. After years if being a pin cushion with numerous meds, I am currently on my 8th day of the Gilenya and I plan on keeping it up. Through my Rx plan it only costs me a copay of $40 for a 90 day supply.

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                #22
                So glad the Gilenya is working out for you. My understanding, lots of the problems - slow heart heart, breathing problems and things happen within the first 6 hours, so obviously those things did not happen to you. How nice to be able to have a pill. And one you can afford.

                I did take lots of notes that day, but since I don't think I would every try Gilenya, I did not keep them. So I must of heard something that turned me off to it. But since it is very hard for me to keep a thought, I can't remember on my own. And since I do have tons of paper in my house due to this, I try not to keep stuff just to keep it. I know they talked about eye problems, liver problems and it does something with your white blood cells that they recommend that you don't do vaccines. I work with sick kids so I get my vaccines regularly. Just got the new Tdap for whooping cough.

                I think as more and more people do start it there will be lots of talk and sharing here about it. Keep in touch that way. Not with me, who just doesn't remember everything I heard. I know my son and I walked out and I do remembering looking at him and said. "Guess I won't be going on that one." And he said "I guess not." So, I don't know. Go to the NMSS website and read what they say about it. They are the ones who put the morning talks on.

                I think if you have been on it over a week and have no side effects, that is a great sign. They did talk about how good it was. Better than the so called CRABS.

                You have to find what works for you. Hope Gilenya is your miracle drug. It seems like Tysabri is mine.

                My wish is that eventually everyone will find something that works for them. Until that day comes when there will be a cure for everyone.

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                  #23
                  LL60, thanks for the good wishes & best of luck with your Ty. I know I liked it & had no issues while I was on it but I felt like I needed to listen to my neuro's recommendation & stop it after the 2 years. Hope Gilenya will be my med for a while now but time will tell. Thanks & good luck to you also!.........Mike

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                    #24
                    Laquinimod Is Awesome!

                    Originally posted by shalimar View Post
                    This whole thing bothers me, too. I am on Medicare and so far Gilenya is not on my formulary list for Medicare Part D. Tysabri was paid for lastyear under Medicare Part B so it wasnt considered a drug on the form. list. I was told my doctor will have to contact my drug supplier and request they cover it and hope they will. He wants me off Ty as i already have had 31 infusions. Now i have been off Ty for 32 days and actually feel better, not as stiff. I am willing to give Gilenya a try as long as i will be able to afford it, but the drug i am really interested in is Laquenimod.
                    I was in the 2 year Bravo study. I was randomly selected to be in the Avonex (control) group. The side effects were kind of yucky. In July of 2010 when I completed the study I was given the option to take Laquinimod until it gets FDA approved. So I chose to start taking Laquinimod and I LOVE it. There are no side effects and I just pop a capsule once a day, beats injecting myself once a week with flu like symptoms.

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                      #25
                      I am taking my last Tysabri infusion on January 5, 2011. It will be my 42nd infusion. I tested positive for JC and have used Novantrone in the past. I am at high risk for PML.

                      I just entered a six month Tysabri withdrawal study. I will have a baseline MRI, one month, three months and six months. According to my neuro, the first sign of re-activation of your MS will be on an MRI before any clinical symptoms appear. She is recommending a six month washout period between Tysabri and Gilenya.

                      Regarding Gilenya side effects, I just attended a seminar on Gilenya. The speaker stated that there were three doses of Gilenya used in the clinical trial. The highest dose was the one that caused the fatalities and serious side effects. The one that was eventually FDA approved was the lowest dose. The lowest dose had the same efficacy as the higher dose.

                      Also if we experience any problems with Gilenya, the drug clears your system rather quickly within one month.

                      For the person considering withdrawing from Tysabri and taking Copaxone, I would worry about choosing Copaxone only because it can take six months to ramp up the full therapeutic effect.

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                        #26
                        Originally posted by Kara10 View Post
                        Regarding Gilenya side effects, I just attended a seminar on Gilenya. The speaker stated that there were three doses of Gilenya used in the clinical trial. The highest dose was the one that caused the fatalities and serious side effects. The one that was eventually FDA approved was the lowest dose. The lowest dose had the same efficacy as the higher dose.
                        This fact is what gave me some peace about starting Gilenya.

                        CrazyCatLady
                        MS Does Not Define Me.....My Love of Tea Does! LOL!

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                          #27
                          Originally posted by Kara10 View Post
                          I am taking my last Tysabri infusion on January 5, 2011. It will be my 42nd infusion. I tested positive for JC and have used Novantrone in the past. I am at high risk for PML.
                          Kara, my history is the same. Have you come across an actual statistic regarding how much the past Novantrone use increases the odds of contracting PML?

                          Originally posted by Kara10 View Post
                          For the person considering withdrawing from Tysabri and taking Copaxone, I would worry about choosing Copaxone only because it can take six months to ramp up the full therapeutic effect.
                          My neuro wants me to switch back to Copaxone. I want to overlap with Tysabri for at least 3 months. Do you know where I can find the Copaxone data that you referred to?

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                            #28
                            Kara and Java Junkie

                            My history is similar to both of yours and I spoke to Elan and they told me that with our history our chances are around 1.5 500. I am having my 43rd and last Tysabri treatment on Tuesday. I am hoping to start on LDN and nothing else.

                            I would love to hear more about the clinical study you are in. Is it still active?
                            I may have MS but MS does not have me!

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                              #29
                              Making the switch from Tysabri to Gilenya

                              Sounds like I am in the same boot as many of you...had my 38th and last Tysabri infusion 11/29...will have a 3 month washout and start Gilenya end of feb/early March. Knowing that the dose that was approved was the lowest does give me some comfort.

                              Carol

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                                #30
                                Originally posted by Kara10 View Post
                                For the person considering withdrawing from Tysabri and taking Copaxone, I would worry about choosing Copaxone only because it can take six months to ramp up the full therapeutic effect.
                                There doesn't seem to be any reliable information that supports that, putting it into the realm of urban myth. None of the documentation for Copaxone mentions anything about a "build-up" period, let alone the 6- to 9-month figure floating around the Internet. I've never been able to find anything in the medical literature that supports this theory, either. If anyone can cite a reliable source, please speak up because a lot of people would like to know.

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