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Sooooooooooo, my neuro is letting me wean off of my AD, Effexor. I am not so much depressed as anxious really. Depression is a huge part of my MS, but no meds really do the trick anymore so why take them. I have been on 9 or so in the last 12 years. 12 in the last 23. I am going to rely on my diet more and anxiety meds!! lol

Now, here is the decision I need to make. There is a drug called Tysabri which is the only one truly helping the progressive forms of MS which is me. Happy happy joy joy. lol The only real side effect...death. rofl Hubby and I busted out laughing when he said that. Ok so 3 deaths out of 30,000 patients. The medication has shown to seriously slow the disease and even in some cases reverse some issues.  

I try not to talk to much of my issues with my ms, as most of you know I am 95% of the time in my WC. Walking, even with my walker is getting harder by the day. I get the shakes, or as hubby calls it ‘the rythym’ when I try to walk. I need help getting in and out of my bed, help in the shower, help getting dressed. This is NOT how it was supposed to be for me at 45. I also have some pretty embarrassing problems as well.... let’s just say no more sexy undies for me!! lmao Hubby likes his woman in serenity’s. tongue out

I can laugh at myself very easily, but inside I die a bit every day. I try to hide much of my emotions, and I am damn good at it too, if i do say so myself. Laughter through tears is my favorite thing.

Sooo, back to the medication...it is an infusion once a month. No site reactions, no flu like symptoms, no depression, no real side effects, but...death. lol It’s hard not to laugh as when my neuro said we all cracked up. Like oh, no biggie, you might die. I had always said i would never try anything that caused seizures or death due to my children. I would never want them to see me have a seizure or, well die. They have seen enough when the ambulance comes and takes me...7 or so times already in their young lives.

But, what if this can help me?? Even just slow it down. I am getting bad fast. I feel it in my body every day I wake up. I am so afraid of being the woman in the bed that everyone has to feed, change, etc. It has happened during flare ups. I told my family if that ever happens completely to help me end it. I will not live like that.

I ramble...lol
Now the 3 deaths were: 1 was an alcoholic, one had undiagnosed hepatitis, one had undiagnosed auto- immune deficienies. I have none of those things. If I do this I will never touch another glass of wine.  

So, ladies, I am asking for honest opinions. I do not want to live like this getting worse everyday. I would never go into all that happens to me, as I try and look to the good things like my family and new fab 40 friends. ♥

Please, if you read this far, will you give me your feelings on this new medication...I am scared, which is a weird feeling for me, and need some advice from those I treasure.

Blessings, love and light!
xoxo



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Member Comments

    • 0 votes vote up vote up

      Susan Sullivan wrote Mar 27, 2009
    • Wow, that’s a tough one. Meds are hard...I nearly lost the use of my hands and feet over a med that others take with no problems whatsoever.  For me, I found my condition was helped more by nutrition, natural remedies and prayer than meds but then, I don’t have MS.  

      I think you‘re so brave and honest and I wish I knew the answer to give you.  Just know that I’m in your corner and hoping that you get the right things you need.



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    • 0 votes vote up vote up

      (華娃娃) ChinaDoll wrote Mar 27, 2009
    • Tracy, as you know I have run into this a few weeks ago regarding the RX my MD is going to put on me.  Though it does not cause death, I can sure understand how you feel, the fear, the concerns, the evaluation process.  

      My gut feel for you is to take it.  Yes, death is the probable loss but like you have done your research and you know the odds.  If you don’t, then MS progress.  What is the success rate of the drug that helps with your MS?  That’s another important thing to consider.    

      Also, would it be a sudden death?  Will there be warning sign that can possible catch before the death angel calls?  What is the dosage and the course of treatment plan from your MD?  Will it be slowly introduced and increase?  How would he evaluate?  How long will it take effects?

      I am rambling as well and I will pray for the best.  I love you my friend.



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    • 0 votes vote up vote up

      Jenz ~ wrote Mar 27, 2009
    • Hello my very most favorite UGG fan. estatic
      I hope you are feeling calm & ok right now. Sending you hugs and UGGS.

      You know, I didn’t know what happened to someone exactly that has MS until just the other day when I listened to Montel Williams talk about it in detail. I was really floored by it. He did a ‘day in the life’ type of show/documentary with Oprah and Dr. Oz. I really don’t know what I would do with the decision you have in front of you. It does sound promising due to the fact that you don’t have the issues that the people who didn’t have success with that particular medication had.
      What about a 2‘nd opinion from another specialist, if you haven’t already?
      I’m going to look something up. I’ll be right back.



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    • 0 votes vote up vote up

      Jenz ~ wrote Mar 27, 2009
    • Ok I’m back. I was looking for something helpful from what I watched the other day, but it’s not congruent to your question. If you would like to see it though, it’s on Oprah.com under Dr Oz & Montel.

      I believe you will have to go with your deepest intuition on this decision. I wish I could help more. Is there a certain time frame you have to decide?



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    • 0 votes vote up vote up

      Polly W wrote Mar 27, 2009
    • Hi Tracy-I don’t talk too much about something like this, but my best suggestion is, that those deaths seem to have something to do with a liver not functioning well. I would have the doc do liver function studies, and ask if this medication requires it on a regular basis. It seems that the possiblity of death is stronger when the drug is metabolized by the liver, and that could be why those people died-they may have already had a compromised liver to begin with.

      Ok—-I actually just looked it up. Here is the labwork guidelines

      Lab tests, including blood counts, liver function, and magnetic resonance imaging (MRI) scans, may be performed while you use Tysabri . These tests may be used to monitor your condition or check for side effects. Be sure to keep all doctor and lab appointments.  

      Also—if you are otherwise healthy, not on immunosuppressive therapy, and have a healthy liver, you might want to consider this. There is an MS support forum with many people on this medication. Sounds promising to me. The onset of adverse reactions has warning signs associated with it, and therapy should be stopped if you have those side effects—-some people ignore those signs and symptoms which in turn, leads to illness and death. Pay attention to your body and don’t ignore anything.

      I have crohn’s disease, and honestly if it was as bad as it can get, I would try something like this myself. I am lucky to have had a “remission“. No problems for years—after taking tons of meds for years. No meds anymore either



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    • 0 votes vote up vote up

      Mztracy wrote Mar 28, 2009
    • I so appreciate all the input.

      To do this he wants a battery  of tests run first. MRI, blood, etc. He gave me a dvd and booklet. I trust him completely. He actually lets me do what I want. lol One time they wanted to admit me to the hospital. When i told the er doc no, he said your doctor told me you would say that. lol  

      He always laughs and says I know more about MS than most doctors he knows. I’m big into research. Sometimes too much. lol  

      I will be monitored monthly, blood work etc, and he will most likely call. He does that. I have been with him all my 12 years of diagnosis. I did avonex for 8 years, then rebif for 3 mos and told him no more.  

      Jen, thanks for the info. I will check it out. Not a big fan of montel, but he does get good info. And no time frame. My doc said when and if i feel comfortable.  

      Thanks again, getting all this out takes a load off!!

      and jen...love my UGGS!! Now i want chocolate and sage. I have 3 pairs now, my baked clay classic talls, my blk joplins, and my 23 yr old originals!! Woo hoo lol



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    • +1 votes vote up vote up

      Shopgirl1960 wrote Mar 28, 2009
    • Tracy,

      You have a lot of good responses. I think researching this medication and asking as many questions as you need to will help you to make the right decision. And I’m sure you are already on TOP of all of that! Trust YOU... I can tell what a bright and intelligent woman you are!!!!

      Whatever decision you decide to make Tracy... you need to make the decision and then not question, or worry about it anymore.OR- sometimes a SCHEDULED worry time really helps to reduce anxiety.

      I send more caring thoughts and prayers for you than you will ever know!!!

      Much Love,



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    • 0 votes vote up vote up

      Linni wrote Mar 28, 2009
    • Hi Tracy

      Like Della said you have gotten great responses.. i would do what YOU feel is the right thing to do. Sounds like you are doing the research, and you know your body pretty well.. im not sure what to say because i have never been in this situation before, and have no clue. Just know i will keep you lifted in Prayer..im here if you need ANYTHING!

      Love to you
      Linni



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    • 0 votes vote up vote up

      Shopgirl1960 wrote Mar 28, 2009
    • I hope you will read my new blog,“Two More Days Until I Celebrate.”

      Big Hugs!



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    • 0 votes vote up vote up

      Feathermaye wrote Mar 28, 2009
    • MzTracy, I’ve not read all of the responses yet this morning (still struggling through my first cup of coffee) but I don’t doubt for a minute that the advice you‘re getting from your friends is as heartfelt as can be. So, if I repeat anything already said here, I apologize in advance.

      I guess, for me at least, the decision would boil down to the quality of life I would experience if I didn't take the chance on the new medication. If you know for certain that you will get progressively worse without it, but are facing a potential improvement with it, then that's probably where your line of thinking needs to be.

      I agree that you are a brave soul, and I have learned so much from you since meeting you here at Fab. Your body may be disabled, but your spirit is soaring. Thank you for consistently being you!



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    • 0 votes vote up vote up

      Mztracy wrote Mar 28, 2009
    • TY all so much for your replies.  

      He has wanted me to try this for some time now. But I always say no. Now, since I have been getting worse I am re-thinking it. It will not happen overnight. I have to be approved. lol They ck your heart, do an mri, blood work.  

      Feather you hit the nail on the head. I do not want to keep progressing. The only other issue is something the book says:
      Tysabri does not cure MS and has not been studied longer than two years or in patients with chronic progressive MS.  

      hmmmm i have chronic progressive, now i am confused. lol
      think i will go and look closer at the site.
      www.tysabri.com



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    • 0 votes vote up vote up

      Cynthia Schmidt wrote Mar 28, 2009
    • The first thing I was thinking as I was reading was “what were the individual circumstances behind the few deaths that have occured?” And, “do you fall into that category?”

      You answered both questions.

      Someday there may be a new drug available. If this particular one can help you have a better quality of life right now, I believe it’s worth being open to it.

      I recently had an issue with an asthma drug that had an “increase of asthma related death” as a possible side effect. I called the drug company. I didn’t ask the doctor because they are not really in the pharmaceutical biz. I did ask the pharmacist for his opinion. And then I called the drug company directly and clarified this possible side effect.

      I would also continue to keep informed on anything and everything - all little bits of information that come forward about this drug if you decide to use it. But there’s something to be said for quality of life.In some cases it outweighs the risks.

      We never know when a miracle is on the horizon.



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    • 0 votes vote up vote up

      Mztracy wrote Mar 28, 2009
    • I just found this on the nmss site:

      The strategies for treating SPMS include:

      Modifying the disease course
      The interferon beta medications (Avonex, Betaseron, and Rebif) and Tysabri (natalizumab) are approved by the FDA for use in relapsing forms of MS, which include those individuals who have transitioned to secondary-progressive MS but continue to have relapses. Therefore, a person who has been on one of the interferon medications during the initial relapsing-remitting phase of the disease will likely continue on it unless his or her physician feels that it is no longer doing an adequate job of controlling disease activity. At that time, the physician will likely recommend changing to Tysabri (natalizumab) or Novantrone (mitoxantrone).
      Novantrone, a chemotherapeutic agent, is the only medication that has been approved by the FDA specifically for SPMS, as well as worsening relapsing MS  

      I may want to look in to the novantrone as well.  

      I agree Cynthia: We never know when a miracle is on the horizon estatic



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    • 0 votes vote up vote up

      Cynthia Schmidt wrote Mar 28, 2009
    • I just wish I could take it all away, Tracy. Sometimes I get angry right along with you, especially when you had that issue with the chair. I look up to heaven and say “what the heck are you thinking? She’s one of the good ones and if anyone deserves a miracle, it’s her.” That’s why I think that if there’s something that can at least keep you keep fighting until that miracle comes, it’s worth a look.



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    • 0 votes vote up vote up

      Mztracy wrote Mar 28, 2009
    • TY cynthia and i agree with what you said. I will fight until the end. It’s my nature.

      As for the chair issue...lmao now going through it again as our insurance changed and they do not want to pay for 3000.00 one!! I actually busted out laughing on the phone with them.  

      And my new van, the kneeling thing stopped. It is where the van tilts to the side to come out on the ramp. It stopped and the guy as not called me back!!  

      So my motto is laugh-out-loud!! lol



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    • 0 votes vote up vote up

      Cynthia Schmidt wrote Mar 28, 2009
    • I’d like to laugh out loud as I’m punching the guy in the nose!



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    • 0 votes vote up vote up

      Coachmombabe wrote Mar 28, 2009
    • THIS  just breaks my heart. I'm just so sorry you even have to go through this. I know you don't need pity, you don't need people feeling sorry for you. I just wish I could help. You are such a beautiful woman with a beautiful, generous spirit. Okay, that said...

      What are the risks of dying in a car accident? Second hand smoke? I don’t know. All I’m suggesting is we take huge risks with our lives daily, often without even thinking about them.  

      One in 10,000? One thing I DO know, is none of us get out of here alive (100%). But then, no one wants you to leave prematurely!!!! I hope that does not sound harsh, I certainly don't mean it to be.  

      I’m praying you are guided by Divine wisdom!

      xoxo



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    • 0 votes vote up vote up

      Mztracy wrote Mar 28, 2009
    • I just called again, he will be in on wednesday!! Oh that poor guy!! lmao Wait till he gets a load of me!! lmao



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    • 0 votes vote up vote up

      Coachmombabe wrote Mar 28, 2009
    • I found this interesting link on risks.

      [Link Removed]


      Coachmombabe, Your links have been removed, please consider upgrading to premium membership.



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    • 0 votes vote up vote up

      Mztracy wrote Mar 28, 2009
    • gr8 link.... the falling coconuts made me lol! tongue out



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    • 0 votes vote up vote up

      Clyn wrote Mar 28, 2009
    • I would take it if there is a chance that it might help. I get not wanting to be totally dependant, my ataxia is degenerative and honestly my future scares the crap out of me. I dont like living this way and if I had an alternative ,id take the risk.



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    • 0 votes vote up vote up

      Doreen XoXo wrote Mar 28, 2009
    • MzTracy...I say go with what you truly want in your heart.  If there is one millisecond of a chance that you will feel better and not get any worse, then I say go with it.  You have EVERYTHING to gain from it.  The glass is half FULL.  Im praying for you MzTracy.  You are loved.

      xoxo



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    • 0 votes vote up vote up

      Deb Darby wrote Mar 28, 2009
    • Dear, sweet MzTracy,

      You have received some amazing wisdom here from those who have been through (and are going through) some similar circumstances.

      Every decision Michael has made with his tongue cancer has been his very own, and I know, because he’s told me that it’s an extremely lonely feeling. We’ve also had the “ending it” talk. It sounds like your husband is an awesome, supportive guy. I’m glad you have him.

      I agree mostly with those who have reminded you that the docs give you the worst case scenario. If it were Michael, I would tell him to take it, since he’s ready to go whether tomorrow or much farther from now. Still, I would love him and support whatever he decided. I’m praying for you in your decision, Sweetheart and only wish there was more that I could do.



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    • 0 votes vote up vote up

      Jewelrybyirina wrote Mar 28, 2009
    • Tracy,
      I hope you feel better today. If there is a tiny hope, that a new medication would improve your condition you should take it for you, for your family!
      I will pray for you.



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    • 0 votes vote up vote up

      Dennie05 wrote Mar 29, 2009
    • Wow...you ladies are amazing with your advice.  I think the points laid out by beauticontrol were excellent.  Do baseline liver studies and continue to monitor.  Many drugs are metabolized by the liver...therefore become more toxic to your body if your liver is not functioning properly.  I would also contact the pharm rep as it seem like you have (although...remember they are very biased).  I am sure these meds are not cheap.  Will you require a life port implantable device for administration monthly, or will an peripheral IV need to be started every time (or is it an injection...I may have missed this). Has your neurologist had anyone else on this medication?  If you are progressing as quickly as you state....you are running out of options..it sounds like...and this is very scary.  Good nutrition with proper supplements are also so important (in my eyes).  I just pray you find YOUR decision and feel good about it.  I think you have made your decision..but need reassurance in it.  This is a very big and frightening decision...buy once you make it...move forward and don’t look back.  Just making the decision is sometimes the hardest part. Please keep us updated and I will be praying for you and your family.  We all love our Mztracy!!!



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    • 0 votes vote up vote up

      Violet514 wrote Apr 1, 2009
    • MzTracy,  

      I had to reply to this one as it touches close to home as one of my closest friends is going thru the exact same thing as you, and like you she has a wonderful husband and children as a support system.  

      I agree with most of your posters here, that you sound like you’ve done your research and your doctor sounds great!  I know when it comes down to it you’ll make the decision that’s best for you and your family.   I hope whatever you chose it takes you on the path to a full recovery.  

      You have me wondering if my friend knows of this med, I’ll have to ask her tomorrow at at decent hour of course!   Unfortunately I only hear horror stories of her doctor, so I wonder if this has been suggested to her as well?

      Take care, and God bless!



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    • 0 votes vote up vote up

      Sugarsmom wrote Apr 3, 2009
    • MzTracy, Never thought I would “go public” but you ladies are awsome.  I wish I had found this site before.  I also have MS and have struggled with these drug issues.  My family helps but sometimes an opinion from someone else relieves the pressure. I have Remitting Relapsing (not nearly as severe as you but similar issues.) I believe you will make the right decision, and 3 deaths in 30,000?  Well? All MS treatments have side effects.  Some affect the heart, some the kidneys and one hits the liver.  It is an 6 of one and half dozen of the other. If you are still in a quandry ask God.  There is power in Prayer.
      Hugs,  SugarsMoma  Jane  (Too old to die young)



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    • 0 votes vote up vote up

      Carolnphil wrote Apr 15, 2009
    • Would it help to email or talk to someone on the Tysabri?  I have an online friend who is on it.  Email me at [Link Removed] for more info.


      Carolnphil, Your links have been removed, please consider upgrading to premium membership.



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    • 0 votes vote up vote up

      Mystikaldreamss wrote Aug 16, 2009
    • Tracy,
      THe only thing I know about that tysabri (sp) is that my mom goes to the hospital once a month to get it intravenous. I guess its a personal decision, I dont know. My mom talked to my dad but if I know my dad he told her its entirely up to her. Plus I’m sure her neuro told her all the ins and outs of it. She has had this same neuro since she was first diagnosed when she was 25. She is now 63. This last 2 years MS has taken quite a toll on my mom so maybe that is why she chose to do the tysabri. I will have to ask her about the side effects though, and will get back to you about what she had to say about it. I know my mom wasn’t one that was big on any new meds that were out there,our whole family was surprised that she allowed them to put her on it. I do know that since she has been on it , now its been well over a year. She has gone back to work. She is back with her cane, no walker, no wheelchair. Now I also know that woman is more determined than I dont know what, lol...shes my rock though. When I am whining about somthing, and ask her how she deals with all the stuff she deals with, her answer...very simple..she goes..Gina, you just pick yourself up and move ahead. You just do it. NO use complaining about it, gets you nowhere except more depressed. Do what you can, and do your best. Thats it, lol...then I go..ok mom thanks. It sounds very simple but it helps me, and I see it works for her....ok got off track here, lol...sorry...
      hugs,
      ~gina



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    • 0 votes vote up vote up

      Mystikaldreamss wrote Aug 16, 2009
    • Well I should look at dates, I didn’t realize this was monthes old, lol..sorry!
      hugs



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    • 0 votes vote up vote up

      Mztracy wrote Aug 16, 2009
    • np with dates Gina. Is your mom rrms or a progressive form? I would love any input from her!!
      xx



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    • 0 votes vote up vote up

      Mystikaldreamss wrote Aug 16, 2009
    • Hi Tracy,
      I couldn’t sleep so I came back to see whats going on, lol...anyways I will have to ask her cause I am not sure. I know when she was diagnosed she was in the hosp for alittle while then it seemed like she was fine for years...then little by little you would notice things. Her eyes, started dragging her leg and stuff. She was hospitalized a few times and then said it was like in remission. Seemed to be ok for some time. Until a few years ago. She didn’t tell anyone but she couldnt walk. THey told her she wouldnt walk again. By the time she left the hospital she walked. She wouldnt even let them use a wheelchair to wheel her out, lol. But she used a cane for a long time, seemed ok. Drove and all. About a year and a half ago it seems like it came full force on her. She barely could get out of the wheel chair. Slowly progressed to the walker, then a cane again. That was just in the last few monthes. It seems like when she started the tysabri is when she got better. I am thinking now that is why she chose to do it. She was going downhill fast and guess that is why. Dont know why I didn’t think of that before. The only thing now is she no longer drives becuase of the spasms and stuff. She takes bacoflen, think thats how its spelled, lol. Its suppose to help her. Also she now wears a brace on her leg, which she would not do for along time. She needs it now. Someone has to put it on for her, she doesnt like it but has accepted it. Her right arm, hand she has a hard time with anymore too. IT seems to have affected her right side more. I dont know if that helps any but when I talk to her again I will ask. I tell you what I wish I had that womans strength. She has back problems as well, had surgeries. I dont know if that had anything to do with the MS or not. I know she lives with a lot of pain. Most of the time she covers it up well, but I am around her alot more now so I can tell if its a good day or a bad day. I take her out shopping and stuff. Sometimes I think she overdoes it, but I dont dare say anything, lol. She might hit me over the head, lolol..she is always telling me her left arm is still good as she holds it up making her muscle. Then we laugh..lolol....ok now that i have written a book....lolol as usual lol...I will get back to you..
      hugs,
      ~gina



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    • 0 votes vote up vote up

      Lilwhitedaisy wrote Sep 10, 2009
    • some years ago i was diagnosed with Rhematoid arthrtis,( i was in a lot of pain and using a walking stick ..i was in my late 30s) i was going to be put on a drug and i asked ( as i usually do!) what were the side affects, 1 was death, 2 was blindness...i chose to live with the RA!!!..then i changed my diet.....this year i had blood work done, i have had no RA symptoms for quite a few years now. Here is the strange thing...i was told i did not have RA...before the blood work confirmed it..full blown....now NOTHING..not even a smidgen in the blood test...go figure.  changing your diet even if you do decide to take this drug, will also be a good thing i beleive.



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    • 0 votes vote up vote up

      Msj wrote Apr 29, 2010
    • I just felt like sending u a HUGheart



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