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    #16
    dcancellarich-- This is great news. Hopeing all goes well for
    you.

    I have an appoint. next month with my neuro to get started. I will be discussing wash-out period from TY with him again. He said earlier no wash out period.
    God Bless Us All

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      #17
      I had my neuro appointment April 1st and received the Tecfidera stater kit on the 11th. I was the first one at the MS center I go to to get the form faxed out. I have insurance but the price was ridiculously high and I in turn qualified for the $10 copay, thank goodness, and Axium pharmacy sent it to me next day air via UPS free of charge. I wanted to wait until today Saturday to start in case I had some sort of ill reaction to the med. I hope and pray everything goes well! My doc told me to take an aspirin for the flushing and some Imodium for any gastrointestinal problems. I have been on LDN for a bit and I don't want to stop taking it . I don't know what to do!

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        #18
        Still waiting Mizz

        I am still waiting. I haven't heard back from my nurse practitioner who helped me fill out the Tecfidera form. I haven't heard from my pharmacy (i-core). They haven't received anything and if you have called Biogen I'm sure you know what that is like.

        When I went to my Blue Cross online to check if claim was approved I saw nothing but the usual over-priced neurologist office visits.

        When I was at my neurologist on the 5th there was a lot of people there for Tecfidera and my nurse practitioner had 3 pages full of people coming in for it so I am hoping soon. I still have a 2 month supply left of Rebif.

        We will see. I'll give the big 3 a call again Monday.

        How did you gt your Tecfidera so quick Mizz?
        I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

        Bill Hicks

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          #19
          Not sure what you mean by titration. I am starting the starter pack, which starts as a lower dose that will be increased by the end of the first month.
          Originally posted by dcancellarich View Post
          The pill is taken twice a day, starting with 120 mg. twice a day and then becoming 240mg. twice a day.
          This is the titration. Sorry I'd din't know what it meant until my Neuro told me. Mine is still queued in claims. I'm calling my insurance provider Monday to see if everything is ok.
          I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

          Bill Hicks

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            #20
            I'm surprised I recieved it so quickly! Sadly I have it sitting on my drawer scared to take it lol. I have been researching everywhere online to see if I can take the LDN along with it. I know I shouldn't take LDN with any immune suppressing meds and wasn't quite clear if Tecfidera was one. From what I've seen Tecfidera is an immune modulator so I'm guessing it'll be okay? I'm just hesitant to stop using the LDN because it has helped me walk better.

            To answer your question...I go to the MS Center at Rush University in Chicago. My nuero faxed it out and I figured I wouldn't hear anything back quickly so I waited until Friday to contact Tecfideras 1-800 number. The lady who attended me told me my form was sent to Axium Pharmacy in Florida and they would in turn contact my insurance, Blue Cross. Axium called me on Wed and told me even with coverage the meds would be more than $900 a month. I told them I was currently unemployed and was ready to provide them with information to back it up but they immediately put me under the $10 copay program and sent it to me via UPS next day.

            I already registered on their online pharmacy and paid the 10 bucks and that's it. I keep looking around online to see it anyone else has gotten their starter pack as I did and I can't find anyone. I guess I just got lucky! I needed a break because I've been having a sucky year. Now I need the courage to start. I was just diagnosed late last year and have not been on any treatment except two months of steroids.

            Comment


              #21
              Originally posted by MiZz_JoEy View Post
              I have been researching everywhere online to see if I can take the LDN along with it. I know I shouldn't take LDN with any immune suppressing meds and wasn't quite clear if Tecfidera was one. From what I've seen Tecfidera is an immune modulator so I'm guessing it'll be okay? I'm just hesitant to stop using the LDN because it has helped me walk better.
              The same question came up in another thread and somebody said that Tecfidera is an immune modulator and not an immunosuppressant so its OK to take LDN with it. What I don't understand about that is that the interferons are immune modulators too and not immunosuppressants but LDN is not supposed to work with them. So I guess I don't understand how LDN isn't recommended for some immune modulators and not others or why.

              From what I read it won't hurt to take LDN with an immunosuppressant or an immune modulator - or only some immune modulators for reasons I don't get - it just isn't supposed to work with them because those medicines are supposed to inactivate LDN somehow. So maybe you could try them together and see what happens?

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                #22
                That's what I've been reading but just when I feel like I understand I get confused all over again ugh ha! I think to be a little more certain I'm going to just wait until Monday and call my MS neuro. Hopefully he'll give me more reassurance so I can start taking my Tecfidera.

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                  #23
                  By all means, call your neuro and double check.

                  But wasn't it your neuro that prescribed both LDN and Tecfidera? If it was me, I would assume the doc wouldn't do that unless they thought it was safe...
                  1st sx 11/26/09; Copaxone from 12/1/11 to 7/13/18
                  NOT ALL SX ARE MS!

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                    #24
                    I asked him at the beginning of the year if he was open to prescribing the LDN to me and he said sure. I didn't start taking it until about a month ago because I tried taking it along with the steroids and stopped when I started having chest pains. I don't know if it was attributed to combining both meds or if was another MS symptom. I finished the steroids and started the LDN and I feel like an idiot because I don't remember if I asked him at my last appointment if it was okay to keep taking the LDN or discontinue it. I need to start writing things down before and after my appointments or take someone with me to help me remember things! I keep reading that in the forums as something very crucial to do and the stubbornness in me thinks I'm okay and can remember everything when clearly I can't anymore .

                    Comment


                      #25
                      Hey MiZz

                      Whats your Neurologist's number??? lol
                      My said she doesn't recognize it as a treatment for M.S. I'm going to another Neurologist on Wednesday so I will be asking him for LDN.
                      I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

                      Bill Hicks

                      Comment


                        #26
                        ???

                        I've been on the fence. I've only been on copax for about a month but my neuro started the paperwork for tecfidera at my last appt on the 1st. Haven't heard anything from anyone yet.

                        I'm pretty sure I'm going to switch. The shots don't bother me and I'd rather have the 10 minutes of stinging instead of nausea and stuff but the tecfidera seems to have a higher success rate.

                        I've been in a dark place the last week or so and at this point, I'll do anything to keep this disease dormant or away or in remission or whatever!

                        As for the ldn, I've been on that for about 3 weeks and love it! My neuro said it was fine to take ldn and tecfidera but I'd sure like to see some evidence of that. I've read the same stuff about immuno-modulators and immuno-suppressants.

                        I just want to stay healthy for my kids!

                        Comment


                          #27
                          Originally posted by durgastiger View Post
                          Whats your Neurologist's number??? lol
                          My said she doesn't recognize it as a treatment for M.S. I'm going to another Neurologist on Wednesday so I will be asking him for LDN.
                          If you go to the actual LDN website they have a list of doctors across the country that prescribe it for you. Then again you could possibly find a good neurologist who is willing to hand you the script as I did. Once you get the prescription you have to find a speciality compounding pharmacy. I also looked for that on the LDN site and luckily there is one near the suburbs of Chicago where I reside. I pay $44 for a months supply only because I have it shipped to me. I could go get it but I don't drive and find it hard to get there.

                          Comment


                            #28
                            Originally posted by October22 View Post

                            As for the ldn, I've been on that for about 3 weeks and love it! My neuro said it was fine to take ldn and tecfidera but I'd sure like to see some evidence of that. I've read the same stuff about immuno-modulators and immuno-suppressants.
                            Sadly I stopped taking LDN when I was also taking steroids because of the chest pains and I regret it! Even though I had those pains I was walking wonderfully again and feeling good. When I tried resuming it after tapering off the steroids it just didn't work the same way anymore and my legs suck again. I don't know why. I'm also going to call the specialty pharmacy where I order it from to ask them if they have any feedback on taking it alongside the Tecfidera.

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                              #29
                              october22,
                              I want for you to stay healthy..period. I am glad that you see benefit from the LDN. What do you feel LDN does for you. For me, I have been sleeping soundly and dreaming normally. For 3 or more years prior to taking LDN, I didn't sleep or dream, very well, at all. I also feel that the LDN has helped me with some energy. Good luck

                              Comment


                                #30
                                Hey Jerry!

                                I meet with my other neurologist Wednesday and I'm going to ask him politely for a prescription for LDN if he doesn't I will never go to him again. So I was wondering if you can give me a direction to get the prescription for LDN.

                                I'm going to put a form on my website for people to get in touch with me.

                                I should have it on my site by the end of the day.

                                Thanks Jerry.
                                I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

                                Bill Hicks

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