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Thread: where do we fit?

  1. #11
    Quote Originally Posted by Amelia View Post
    I would be curious to know what is happening to the spinal cord with Devics. I know all the demyelination stuff for Devics and MS. I know Gary's cord is atrophic. One DR stated it had narrowed. He had a myelogram years ago after all of his neck attacks. He went into pain when the dye made it to that area. Gary has been paralyzed from the neck down many many times. Most of those attacks, he healed about 80% from. As the disease progressed and his age, he hasn't been able to bounce back from attacks as well. BUt, let me blow your mind...about 3-12 hours before an attack, he gets dramatically better. For instance, he regained a large portion of sight in his right eye which has been totally blind for years, no light no nothing. Within hours, he was totally blind both eyes. He always drags his right leg. One day it started working completely correct and within 3 hours he couldn't walk at all. I would love to know anyone else that does this. It happens just about every time.
    Amelia,

    Has Gary considered fampridine?

    Wise.

  2. #12
    I agree with Dr. Young. Fampridine is interesting...

    But most importantly, does your husband have a neurologist that you are happy with? Someone at a major medical center who is a specialist in Demyelinating disorders/MS in the neurology department? These days, there is sometimes a doctor in reputable MS clinics with a specific interest in Devic's. It is very disappointing to hear that it has taken so long for him to be diagnosed with Devic's, although I am sure you have learned how complicated a diagnosis of MS can even be.... never mind carefully dissecting out the patients how have this rare (?MS variant disorder) - Devic's.

    I ask this because it will be pretty hard to find someone willing to try medications like Fampridine unless they are a specialist. Also, Rituximab has shown some amazing results with Devic's, and I hope you have been able to discuss the pros/cons of this treatment. It is a heavy duty drug, and has some rare but serious side effects. But I mentioned once before that I saw a young woman with very serious disease (blind, quadriplegic with mulitple spinal cord lesions) who was having multiple attacks a year started on Rituximab and she stopped having attacks and although her vision remained impaired, eventually she was walking again - well!. The fact that your husband still has fluctuating disease, and even more fascintating, has a dramatic improvement in his symptoms before a flare makes me wonder what Rituximab could do...

    I'm so sorry your husband has suffered with this disease for so long. I hope this forum can help give you some support and useful information. Welcome.

  3. #13
    Gary is on 4AP, which is Fampridine in a sorts not time released. corrrect? He has been on it for years. His neuro is a MS specialist in Memphis, TN but not in a MS clinic. The only clinic we know close to us is in Jackson, MS and we are just not as pleased with some of the neuros there. As far as the length of time on dx, we have to take some blame. His neuro wanted to do MRI's for a while for check up on his disease. With only Medicare, you just don't go and do procedures unless it is extremely necessary. From time to time, we bite the bullet and Gary goes for a round of PT. But it takes months sometimes a year, to pay it off. With occasional hospital stays, money is tight. I own my business as a t shirt printer. If he gets sick, I can usually work the biz around the attack. For the caregivers out there, it is hell sometimes.
    Rituxan: Medicare doesn't recogonize it as a treatment for Devics. Funny, there is not a recognized treatment for Devics in the medicine / ins world. As of now, Gary resonds very well to steroids for attacks. We discuss a lot with his neuro. She orginally wanted to put him on Imuran. But I had read many forums where the side effects compared to the treatment did not look as good as Cellcept. She wants him on Rituxan, but there is no finacial way. His neuro goes to many MS conferences and tells us what she finds out. She has taken a special liken to Gary's case. She was handed his files that stated he had MS and there had only been 1 MRI run on the brain. Strangely, at the time it showed 5 lesions, which she stated looked old. The next year was when he had the MRI to start Tysabri. The lesions were gone. His spine is beat up pretty bad. We don't know all the stats of that. His is to up his Cellcept this next week to 750 mg a day. He can even go higher. But we are staying at this a little while to see how he does. He started Cellcept a little over a year ago. He had immediate fast results. His leg spasticty left. But, he was in a type of remission. We think the Devics was still active, but not REALLY active, if that makes sense. He is intermittent cath right now, and I believe in time that will heal. I have seen him be completely paralyzed and then within 6 months be walking again with no problems. And this has happened more times than I can remember to count! We still hold high hopes for him. Without hope, what does any of us have?

  4. #14
    is Fampradine on the market now?

  5. #15
    Yes, 4-AP is the same - although there is a sustained release version (fampridine SR) I believe.

    Wow, I totally sympathize with your story. Can you afford a Medicare supplement policy so that things are not quite as expensive? I know those supplements vary from state to state... but I wonder if the premium might be less then the 20% Medicare co-pays. It is awful to be limited on your treatments/MRIs/PT etc.. because you are on Medicare. It makes me really upset to hear stories like yours..... where your care and treatment is limited by insurance. And you run your own business.... what a juggling act!

    I really wonder about getting Medicare to cover Rituxan..... I think that it is worth getting in touch with some very experienced Neurologists with interest in Devic's to ask them how they get Rituxan covered. This article is from an excellent team that does clinical research on Devic's treatment

    http://www.neurology.org/cgi/content/abstract/64/7/1270

    I would email the doctor whose address is shown, briefly explain your husband's case in a couple sentences, and ask if he has been able to get Rituxan covered for his patients on Medicare. Of course, even the co-pay would be very expensive, so I would think getting supplementary insurance would also be great if possible.... Also, I have heard that sometimes things that you choose for "elective" treatment may not be covered in the outpatient setting, BUT if you get the Rituxan when you are admitted (like with a flare? Or just admitted for a "failure to thrive"... worsening of baseline....) then maybe it might be covered as an inpatient (and with a lower co-pay). I suspect that a doctor who gives this medicine frequently will know how to (dare I say....) work the (broken) system.

    It is good that your husband's current doctor seems to have a particular interest in his case, and seems to be doing a decent job.... but you are a little isolated so getting some additional input (even via email) could be helpful. It is great that the CellCept seems to having a good result. But it would be so wonderful if you could cut down the frequency of those flares....

    Good luck Amelia - and Gary!

  6. #16
    Quote Originally Posted by Amelia View Post
    Gary is on 4AP, which is Fampridine in a sorts not time released. corrrect? He has been on it for years. His neuro is a MS specialist in Memphis, TN but not in a MS clinic. The only clinic we know close to us is in Jackson, MS and we are just not as pleased with some of the neuros there. As far as the length of time on dx, we have to take some blame. His neuro wanted to do MRI's for a while for check up on his disease. With only Medicare, you just don't go and do procedures unless it is extremely necessary. From time to time, we bite the bullet and Gary goes for a round of PT. But it takes months sometimes a year, to pay it off. With occasional hospital stays, money is tight. I own my business as a t shirt printer. If he gets sick, I can usually work the biz around the attack. For the caregivers out there, it is hell sometimes.
    Rituxan: Medicare doesn't recogonize it as a treatment for Devics. Funny, there is not a recognized treatment for Devics in the medicine / ins world. As of now, Gary resonds very well to steroids for attacks. We discuss a lot with his neuro. She orginally wanted to put him on Imuran. But I had read many forums where the side effects compared to the treatment did not look as good as Cellcept. She wants him on Rituxan, but there is no finacial way. His neuro goes to many MS conferences and tells us what she finds out. She has taken a special liken to Gary's case. She was handed his files that stated he had MS and there had only been 1 MRI run on the brain. Strangely, at the time it showed 5 lesions, which she stated looked old. The next year was when he had the MRI to start Tysabri. The lesions were gone. His spine is beat up pretty bad. We don't know all the stats of that. His is to up his Cellcept this next week to 750 mg a day. He can even go higher. But we are staying at this a little while to see how he does. He started Cellcept a little over a year ago. He had immediate fast results. His leg spasticty left. But, he was in a type of remission. We think the Devics was still active, but not REALLY active, if that makes sense. He is intermittent cath right now, and I believe in time that will heal. I have seen him be completely paralyzed and then within 6 months be walking again with no problems. And this has happened more times than I can remember to count! We still hold high hopes for him. Without hope, what does any of us have?
    I am glad that Gary is on Fampridine (4AP). It makes sense and I hope it is what helps brings him back further towards normality in between relapses. Devic's is an auto-immune disease that attacks a particular protein called aquaporin. This protein is the water channel and probably plays a role in the blood brain barrier.

    I am sorry to hear that the medical coverage situation is so ridiculous that you have to ration the number of MRI's that are done for diagnoses. I thin that I can also understand your lukewarm response to my article given that situation. It is hard to think of the possibility of an expensive cure when it is hard to even get coverage for something like rituxan. I am astounded by the cost of rituxan. According to http://arthritis.about.com/od/mabthe...sofrituxan.htm
    How Is Rituxan Administered?

    Rituxan is given to the patient as two 1000 mg IV infusions separated by two weeks. It is given in combination with methotrexate. 30 minutes prior to each infusion, it has been recommended that the steroid methylprednisolone 200 mg IV be given.

    The course of treatment is repeated every 6 to 9 months, according to Genentech and Biogen, the drugmakers of Rituxan.
    What Is The Cost Of Rituxan Treatment?

    The cost of a course of treatment with Rituxan will cost $9,088, said to be equivalent to the TNF blocker drugs on an annual basis.


    Wise.

  7. #17
    before medicare part D was initiated, drugs like this was accessible to the ones who could not pay, by foundations such as NORD. They helped Gary get Copaxone, during his "MS" days. We have a friend on Copaxone that is without because of the Part D doughnut hole. Has anyone figured out who the doughnut hole helps other than the ins company?

  8. #18
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by Amelia View Post
    before medicare part D was initiated, drugs like this was accessible to the ones who could not pay, by foundations such as NORD. They helped Gary get Copaxone, during his "MS" days. We have a friend on Copaxone that is without because of the Part D doughnut hole. Has anyone figured out who the doughnut hole helps other than the ins company?
    Going along with hlh's idea of a good MS doc that can work the system is to look up Biogen's website and see if they have a needy patient program. Most companies that still have brand name monopoly over a drug, IOWs there is no generic on the market yet, will ask your doc to fill out a form and then provide the drug free or for very little. Your doc would need to work on the IV part. You might suggest your friend do the same for the maker of Copaxone. Good luck because this sounds like a rough road on a daily basis.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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