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Tysabri Denial?!? Being bullied into Lemtrada!

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    Tysabri Denial?!? Being bullied into Lemtrada!

    Hi All,

    New to this site and new (annoyingly) to MS!
    Rec my diagnosis a month ago but had had about 3 months prior knowing that it was MS and my neuro also agreeing. in that time the head of neuro (hull) and another neuro had given me lists of drugs but had mentioned Tysabri as a good choice. I assume this is because my MS is fairly active (2 episodes between December and March) I received my diagnosis and again was given the list of drugs, i advised my neuro i wanted to opt for Tysabri and off i went for my blood test for JC.
    I was then telephoned by the MS Specialist at my hosp (never met him before) and he asked for a breif rundown of what had been happening. I happily gave this info, why wouldn't i. He then told me that i cant have it because during one of my relapses, i still came into work so it doesnt class as disabling and he said the critera says i need to have two of them. I argued that i didnt know these were relapses as i didnt know i had MS then. I also had visited A&E when i couldnt see and was told by A&E and a neurolgist that i had a virus and nothing else was wrong with me. So i ask, HOW was i meant to be off work? i work in an office, sat at a desk. I couldnt drive and my bosses would drive me to and from work. So after he told me this info, he said he would send me info on some drugs, Lemtrada being one. I told him i didnt want to take that just yet, being the biggest drug with the most side effects i told him i want Tysabri, it suits my lifestyle, i have seen people with good results and this is my choice but i am told no, i dont meet the critera.

    Has anyone on here had to fight to get their treatment choice? i am fully aware that its a money thing, Tysabri costs more in the long run and im sure with Lemtrada being new, there is a hefty bonus for neuros putting people on it? There is 1 other person in Hull on Lemtrada, my ms nurse intitally was fully supportive of my wishes but once she had tried to sound the ms guy in my way out, she soon started backtracking.

    I am seeing him on Tuesday of next week and i dont know how to play it. I know he is going to push Lemtrada on me, but i am 6 months into my MS journey, i dont feel like it has been bad enough to put myself through that. I am at a crucial point in my working life and i cannot take time out at the moment but i obviously need some treatment. my initital mri showed 8 leisons and the second one showed some of those healing, new ones on my brain and new ones on my spine and neck. I like the idea of going once a month and seeing someone, i dont want to have 5 days in hospital and not be seen for a year, i dont want a drug in my system that may not agree with me. With the infusuions you can stop if its not working. Its just too much of commitment i feel and a new drug, im not a ginea pig!

    Can anyone really give me info on why Tysabri is a better choice than Lemtrada?

    I really dont want to start this lifelong journey with a battle to get the treatment i want, but its looking that way already.

    Thanks for reading.

    if it is important....im a 31 year old female, married with a 7 year old son.

    #2
    Hi hayleymarie,
    I have been my own advocate for years re my health care and I guess everything else I would not let any dr bully me into something.

    I have been on Tysabri for almost 10 years and had to fire a couple neuros who were going to "pull" me off it. I live in the U.S. so I do not know how it might differ for you. If you want Tysabri and do not want lemtrada I would do what I could to accomplish my goal

    I go to a very impressive ms health care system who will not put any of it's patients on lemtrada because of safety and it's not proven itself yet.

    I wish you well!
    Good luck
    Linda

    Comment


      #3
      As just stated - I strongly agree the best advocate for me is me.

      Not quite sure I understand why you were denied, don't remember all the current pre-conditions for each drug.

      I was on Tysabri for 3 years (no issues but thought it best to move on), then Aubagio for 2.5 years until my Dr. thought the newly approved Lemtrada was a better option for me (treatments were in July 2015).

      Push for what's best for you based on your specific situation.

      Comment


        #4
        Hi linda. I am mostly concerned they will say like it or lump it and not let me have tysabri and nothing else. Wish i could find like minded people in the UK. Its all for Lem and anti Tysabri!

        Comment


          #5
          all i know so far is that they are saying my relapses dont class as 'disabling' and i need two of those to get Tysabri. But i can get Lemtrada?

          im going to argue as i really dont want Lemtrada and see what happens. Its hard not to know when you are getting lied to when you dont have any knowledge of what is right and wrong

          Comment


            #6
            Boy, I am really surprised they are pushing Lemtrada since it is so new, and it has the potential for lifelong thyroid complications that require a daily pill. The good news is both drugs have the highest efficacy for the newly diagnosed, younger patient, so either will give you the greatest potential for significantly slowing/stopping your MS. I've been on Tysabri for six years and love it. Perhaps you could approach your situation as someone currently employed, taking off five full days of work might not be possible? Tysabri is just 2 hours, once a month. Your being in the British system, I don't know if that would be a concern. How about the definite possibility of lifelong thyroid medication being a concern? Hmm, good luck! As nasty as it is to be diagnosed with MS, you're SO lucky to have as many choices as you do right now. Just 25 years ago, there was nothing.

            Comment


              #7
              I am on tecfidera and newly diagnosed - my neuro started me on tecfidera - seems like tysabri wasn't an option for me to start off with anyway. It seemed to me that tysabri was a second choice and wouldn't even be approved by my insurance unless I had already tried a different medication and it didn't work. This might be something similar for you too? I am now looking at a potential switch to tysabri since my last MRI showed more lesions.

              I love tecfidera - really easy and very minimal side effects (which are now completely gone). I that's an option for you I encourage you to think about it. I was super scared to take it because of all the side effects, but it was so minimal for me - all you can do is try and see.

              Comment


                #8
                Originally posted by ru4cats View Post
                Boy, I am really surprised they are pushing Lemtrada since it is so new, and it has the potential for lifelong thyroid complications that require a daily pill. The good news is both drugs have the highest efficacy for the newly diagnosed, younger patient, so either will give you the greatest potential for significantly slowing/stopping your MS. I've been on Tysabri for six years and love it. Perhaps you could approach your situation as someone currently employed, taking off five full days of work might not be possible? Tysabri is just 2 hours, once a month. Your being in the British system, I don't know if that would be a concern. How about the definite possibility of lifelong thyroid medication being a concern? Hmm, good luck! As nasty as it is to be diagnosed with MS, you're SO lucky to have as many choices as you do right now. Just 25 years ago, there was nothing.
                HI,

                i know! im scared of the Lemtrada side affects and Tysabri just seems more more easy for someone who does indeed work full time, and has a child, i need to to fit around me. I cant be off work more than a week and i cant be off for the recovery time!

                Comment


                  #9
                  Originally posted by sarabeach123 View Post
                  I am on tecfidera and newly diagnosed - my neuro started me on tecfidera - seems like tysabri wasn't an option for me to start off with anyway. It seemed to me that tysabri was a second choice and wouldn't even be approved by my insurance unless I had already tried a different medication and it didn't work. This might be something similar for you too? I am now looking at a potential switch to tysabri since my last MRI showed more lesions.

                  I love tecfidera - really easy and very minimal side effects (which are now completely gone). I that's an option for you I encourage you to think about it. I was super scared to take it because of all the side effects, but it was so minimal for me - all you can do is try and see.
                  Hi, i am in the UK so insurance isnt a problem or issue. I was given a list of treatments and Tec was on it, however my MS between two MRi's which were within 3 months showed more leisons and i have umpteed side affects and a dodgy left side from my first relapse. So im allowed Lemtrada which is a 1st line drug but not Tysabri! im really going to push for it.

                  Comment


                    #10
                    Wow! That is the opposite of what you'd find in the States. Tysabri is now a first line drug, and Lemtrada is not because of the potential long term health risks. However, either drug has the strongest efficacy, so you're good there. Good luck!

                    Comment


                      #11
                      I would find out exactly what the criteria is and determine if you are eligible and then bring the criteria with you. I am in Canada and my health insurance through work covers my meds, but if the insurance company denied it then the public health system would take over and cover the costs. I am thinking this is something similar to the health care system in the UK?

                      I know there is a very specific criteria for being allowed tysabri where I live which I did not fit into (but now I do since my neuro is not happy with the 9 months of Tecfidera treatment):

                      These are just the criteria for my region, I am sure they are different everywhere! But try to find out what the criteria is in the UK - I am sure the MS society can point you in the right direction

                      o EDSS less than or equal to 5.0;
                      o Has failed to respond to a full and adequatecourse* (at least six months) of at least ONEdisease modifying therapy
                      o Has had ONE of the following types of relapsesin the past year:
                       The occurrence of one relapse withpartial recovery during the past yearAND has at least ONE gadolinium enhancinglesion on brain MRI, OR significant increase in T2 lesion load compared to a previousMRI; OR
                       The occurrence of two or more relapses with partial recoveryduring the past year; OR
                       The occurrence of two or more relapses with completerecovery during the past year AND has at least ONEgadolinium-enhancing lesion on brain MRI, OR significantincrease in T2 lesion load compared to a previous MRI.

                      Comment


                        #12
                        I would research the rule based on your prescription/medical coverage.

                        So sorry you have to go trhu this when so newly diagnosed.

                        I would also make the argument that since new lesions, you have had active disease. It is only thru luck of location that it has not been disabling. And since both your goal and your doctor's goal is to prevent disability, which minimizes long term cost to you and your national healthcare, Tysabri will give you the best chance.

                        It seems odd that they look for 2 disabling relapses, versus evidence of active disease. It is all about lesion location, which no one can bredict. So end goal should be to prevent new lesions and worsening of existing!

                        Good luck. Let us know how it goes.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          Insurance companies and all their power

                          Hello

                          i just started on this site literally this week....how strange I am dealing with exactly what you are. i have been diagnosed for 3 1/2 years. First off no matter what a doctor prescribes for you and how reliefed you are that finial you may have a bit of light at the end of your dark tunnel , the insurance company hold all the power.... ALL THE POWER! i have had to fight for every drug I have been prescribe , i have had to follow their insurance company calender to get to the next strongest drug each time. I spend an ungodly amount of money on my insurance policy , co-pays, out of pocket , begging of the year deductible and it does not matter, they hold all the power.

                          Example I deal with terrible tremors/ restless leg every day keeps me from any kind of consistent sleep... I have tried 3different drugs and finial my neurologist ( who I do not see any more , another topic) sent me to a sleep clinic for MS , the sleep clinic says well let's try to stop the tremors/restless legs and you should be able to sleep.... Really do ya think that's all it is ?? (Waste of time was of money) but they did prescribe me the Parkinson's patch which the swear by it for people whom have MS...

                          Here is my light at the end of my dark tunnel... I am so relived and so happy to finial get some kind of relief , they even call the drug in for me and say it should be ready for to pick up by the time I get home ... I drive 40 min home right to the pharmacy and am told no insurance company will not pay for this . I of course am devastated I call the insurance company and the require for me to be have tried 4 out of the 6 they have on there list before they will consider it... I felt really bad for the customer insurance girl who had to deal with me , one minute I was yelling , than crying with her ... They have all the power.

                          Back to the Tysabri , I have been on Avonex and copaxone both have been what the doctors called failed do to I have never been in remission and am currently in a relapse since March, been through treatment it's not working. My new nuroligist agreed it's time to switch again and I picked tysabri out of the 3 she gave me to choice. Last doctors appointment I had I was under the impression everything was moving forward ,I have tested negative for the virus , my doctor tells me ok I will place,your prescription for the tysabri, I asked how long will it take now? She says about 3 weeks..... I just put my hands over my face and cryed...... It's been 3 weeks now , I am waiting for the insurance gods to grant me the chance to have any kind of hope and life....

                          Yes I am very upset and extremely emotional , every time the phone rings I am holding my breathe hoping it's the hospital ready to make my 1 st infusion appointment. I call every day, the insurance company needs the pre denial form , meaning they are going to deni it right from the start, so my doctor has to write a story and send them all the stuff they already know about me... It's all crap and they have all the power to play with our life's. My advice do not quit trying , do not quit calling there is always some one that can make the approval.

                          ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

                          Comment


                            #14
                            Originally posted by Mcbroom View Post
                            Hello

                            i just started on this site literally this week....how strange I am dealing with exactly what you are. i have been diagnosed for 3 1/2 years. First off no matter what a doctor prescribes for you and how reliefed you are that finial you may have a bit of light at the end of your dark tunnel , the insurance company hold all the power.... ALL THE POWER! i have had to fight for every drug I have been prescribe , i have had to follow their insurance company calender to get to the next strongest drug each time. I spend an ungodly amount of money on my insurance policy , co-pays, out of pocket , begging of the year deductible and it does not matter, they hold all the power.

                            Example I deal with terrible tremors/ restless leg every day keeps me from any kind of consistent sleep... I have tried 3different drugs and finial my neurologist ( who I do not see any more , another topic) sent me to a sleep clinic for MS , the sleep clinic says well let's try to stop the tremors/restless legs and you should be able to sleep.... Really do ya think that's all it is ?? (Waste of time was of money) but they did prescribe me the Parkinson's patch which the swear by it for people whom have MS...

                            Here is my light at the end of my dark tunnel... I am so relived and so happy to finial get some kind of relief , they even call the drug in for me and say it should be ready for to pick up by the time I get home ... I drive 40 min home right to the pharmacy and am told no insurance company will not pay for this . I of course am devastated I call the insurance company and the require for me to be have tried 4 out of the 6 they have on there list before they will consider it... I felt really bad for the customer insurance girl who had to deal with me , one minute I was yelling , than crying with her ... They have all the power.

                            Back to the Tysabri , I have been on Avonex and copaxone both have been what the doctors called failed do to I have never been in remission and am currently in a relapse since March, been through treatment it's not working. My new nuroligist agreed it's time to switch again and I picked tysabri out of the 3 she gave me to choice. Last doctors appointment I had I was under the impression everything was moving forward ,I have tested negative for the virus , my doctor tells me ok I will place,your prescription for the tysabri, I asked how long will it take now? She says about 3 weeks..... I just put my hands over my face and cryed...... It's been 3 weeks now , I am waiting for the insurance gods to grant me the chance to have any kind of hope and life....

                            Yes I am very upset and extremely emotional , every time the phone rings I am holding my breathe hoping it's the hospital ready to make my 1 st infusion appointment. I call every day, the insurance company needs the pre denial form , meaning they are going to deni it right from the start, so my doctor has to write a story and send them all the stuff they already know about me... It's all crap and they have all the power to play with our life's. My advice do not quit trying , do not quit calling there is always some one that can make the approval.

                            ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
                            thanks you for replying. I am in the UK so inssurance is not an issue. Its the nhs funding that i am fighting! I dont know which is worse!!!!

                            Comment


                              #15
                              Hi hayleymarie,

                              Welcome to MSWorld. Sorry to hear of your diagnosis and being told you don't meet the criteria for Tysabri. I live in the US, but hope this information will be helpful. To start with, I'd ask him for clarification of what is considered a relapse.

                              Originally posted by hayleymarie View Post
                              He then told me that i cant have it because during one of my relapses, i still came into work so it doesnt class as disabling and he said the critera says i need to have two of them. i argued that i didnt know these were relapses as i didnt know i had MS then. I also had visited A&E when i couldnt see and was told by A&E and a neurolgist that i had a virus and nothing else was wrong with me. So i ask, HOW was i meant to be off work? i work in an office, sat at a desk. I couldnt drive and my bosses would drive me to and from work. So after he told me this info, he said he would send me info on some drugs, Lemtrada being one. I told him i didnt want to take that just yet, being the biggest drug with the most side effects i told him i want Tysabri, it suits my lifestyle, i have seen people with good results and this is my choice but i am told no, i dont meet the critera.
                              A relapse doesn't have to be "disabling" to be considered a relapse. It can be mild, such as tingling or numbness. I wouldn't consider losing your vision as mild, even if you still went to work. This is universal, regardless of the country you live in.

                              "An exacerbation of MS (also known as a relapse, attack or flare-up) causes new symptoms or the worsening of old symptoms. It can be very mild, or severe enough to interfere with a person’s ability to function at home and at work. No two exacerbations are alike, and symptoms vary from person to person and from one exacerbation to another. For example, the exacerbation might be an episode of optic neuritis (caused by inflammation of the optic nerve that impairs vision), or problems with balance or severe fatigue. Some relapses produce only one symptom (related to inflammation in a single area of the central nervous system) while other relapses causes two or symptoms at the same time (related to inflammation in more than one area of the central nervous system).

                              To be a true exacerbation, the attack must last at least 24 hours and be separated from the previous attack by at least 30 days. Most exacerbations last from a few days to several weeks or even months." http://www.nationalmssociety.org/Tre...aging-Relapses. USA

                              From the MS Society of the UK:

                              "Natalizumab (Tysabri) is recommended for the treatment of 'highly active' relapsing MS.

                              You can take natalizumab if:

                              -you have relapsing MS and you've had a relapse in the past year and MRI scans show new signs (lesions) that your MS is active despite taking another DMT

                              -you have relapsing MS and - whether or not you've taken another DMT - you've had at least two relapses in the last year and MRI scans show new signs (lesions) that your MS is active" https://www.mssociety.org.uk/what-is...-drugs/tysabri

                              Alemtuzumab (Lemtrada) can be used more widely as a person's first DMT. But this is only if they've had a recent relapse and/or MRI scans show new signs that their MS is active (they have new lesions). In these cases it can be used whether people have tried another DMT or not. https://www.mssociety.org.uk/what-is...drugs/lemtrada. This would be the simplest to prescribe, but hopefully the MS specialist will be willing to pursue Tysabri.

                              There is also something known as the MacDonald criteria. A diagnostic of MS can be made with evidence of just one lesion together with reasonable historical evidence of a previous relapse. https://www.mstrust.org.uk/a-z/mcdonald-criteria. I didn't know my first relapse was a relapse, either. It was diagnosed as something else. This isn't uncommon at all. Maybe you could print this out ask him what is meant by reasonable? Ask if your first attack was optic neuritis (it can be caused by a virus - the cytomegalovirus - not MS)? https://www.betterhealth.vic.gov.au/...optic-neuritis.

                              More info about optic neuritis. https://www.mssociety.org.uk/what-is...optic-neuritis

                              Originally posted by hayleymarie View Post
                              i am fully aware that its a money thing, Tysabri costs more in the long run and im sure with Lemtrada being new, there is a hefty bonus for neuros putting people on it?
                              That's not only highly unethical, it's dangerous. Every patient has different needs and should be treated as such. Unfortunately, that doesn't stop it from happening. There's corruption and greed everywhere. In the US, legislation was passed a few years ago (called the Sunshine Act) that requires all pharmaceutical companies to report any monies given to doctors, even if it is only something like coffee and doughnuts. They have to report the cost.

                              I used to see a MS Specialist who was caught up in a money laundering scheme for another MS drug, Rebif. (Although he never prescribed it to me - a previous neuroIogist did and I had a really bad reaction to it.) The US department of Justice filed a lawsuit against the the pharmaceutical company after a whistleblower came forward, but the case was settled out of court for $44 million dollars.

                              He abruptly left his practice several months before this settlement, to work for guess who ... the pharmaceutical company who makes Rebif (Serono). Remember the letter he sent to us that he had accepted another position, stating something about continuing his work with MS, but in research. Turns my stomach that I thoughy so highly of him and really liked him, but that this was going on behind the scenes while I was one of his patients! Because this was settled out of court, no criminal charges were ever filed against this doctor. Continues to work for one of the pharmaceutical companies, but now a different one.

                              Hopefully, nothing like this is going on with your MS Specialist. But, something certainly doesn't sound right. Could be he would've changed his tune anyways once you met with him, but would suggest taking hard copies of the info provided in links I shared and taking them with you to your appointment. Maybe once he knows you've done your research he'll more willingly prescribe you Tysabri. (A word of advice is to write everything down you wish to talk about and take it with you to your appointment).

                              Best of luck and let us know how your appointment goes.
                              Kimba

                              “When you change the way you look at things, the things you look at change.” ― Max Planck

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