8 week infusion

[lindaincolorado]

Hi all,
today I had my well over 100 infusion.. I do not know how many now that I went to every 6 weeks approx 6 months ago and now I am getting infused every 8 weeks. I am 66 years old; my Dr says that once over 65ish ms disease may not act up and we older folk could give up DMDs. I believe that "if it ain't broke don't fix it" , so I do not want to give up Ty, but I will say I did not feel any different going 8 weeks than I did going 4.

My Tysabri journey started 10/2006 I wish it could've been 2 years earlier, as my progression halted and if it halted 2 years earlier I would still be going for LONG walks and dancing like I want. I am not complaining-I am so very thankful to G-d and Ty for how well I am and my QOL.

Just wanted to share..

[jreagan70]

My Tysabri journey started 10/2006 I wish it could've been 2 years earlier, as my progression halted and if it halted 2 years earlier I would still be going for LONG walks and dancing like I want.

Wishing is nice, but you wouldn't have been able to be continuously on Tysabri starting 2 years earlier. It was off the market and unavailable for more than a year of those 2 years: from February 2005 to June 2006, while your progression was going on.

So there aren't any "what-ifs" for you to regret. You didn't miss an opportunity, and nothing for you to wish you could do over.

Imagine my surprise when I had my one and only infusion of Tysabri, and it got pulled from the market just one week later!

All things considered, it sounds like you've done well with what was/is available to you.

[tortis]

Hi Linda. I am still waiting to hear when I will start Tysabri but if you have done that well for so long how could your neurologist possible know if going off Ty will not send you right into a flare. Seems to me your statement makes more sense "if it ain't broke don't fix it" but I am not a dr.
I have heard that 65 year thing before but not from a lot of msers or Doctors. Is it it true? It would be great to hear from some msers 65+ whose M.S. has stopped progressing and if so, I hope the researchers are studying that real hard because that might be the big clue to a cure or better treatment.
Good luck,
PEACE
Tortis

[KatieAgain]

Linda

I am glad you have done so well on TY...you really have. I too am not a big believer in the "Over 65 Theory". But at some point I will give up DMDs. I said TY was going to be my last, but my Neuro is making me come off in favor of Lemtrada. When? I don't know. I am staying on TY until then.

BTW...I know you were looking for Myoak. He is posting over at Active MSers.

[LL60]

Linda, I have enjoying following your journey these past years. We both have had amazing reactions to Tysabri. I am so glad going the extended dosing has worked well for you. So far, there has not been one case of PML reported on extended dosing. I tried to go every 6 weeks, and for me, it just didn't work. Some of my MS symptoms came back and it took a few infusions at the 28 day cycle to get me back to where I was. Everyone has to work out what is best for them.

MS is so different for everyone. Hard to know just how it follows with each person as they age. The most damage is done in the inflammation process, which is usually in the beginning, but can take hold at any time. It's why early treatment is so very important. This is not something someone can "wait and see" with.

And this is a disease that is so hard get information on when it comes to the drugs out there for us. It is such a huge business that companies guard the information like a mother bear guards her cubs. I wrote a letter to the CEO of Biogen trying to get some information. He forwarded it on to their research department and I was expecting to finally get some answers. Instead, I got a letter repeating what is in the hand out they give you before your infusion; not one single question was answered. Not one about the new testing for the JC virus and just what your CD62 levels meant, not one about the drug CMX001, not one about more information on dose extensions, not one about why PML patient numbers have stopped being released. I was so mad. Finding out information has become a life of hours searching computer sites and reading mass amounts of papers and information until I could just scream. And where do I find a lot of good informative information?? On financial websites. Because, after all, it is a business and shareholders need to know what is going on. Not patients.

I have found great information on these message boards for Tysabri in the past. Not so much anymore. People stop posting for various reasons. Me included. I'm tired. I'm tired of the fight to stay on a medication that works. I'm tired of fighting my insurance company for every little thing. I'm tired of trying to wade though medical journals with a dictionary and Tabers and Merck Manual sitting next to me. I'm tired. And so I choose to pick the few hours a day I have any energy to enjoy life. To live my life. I take nothing for granted and I do enjoy each day.

Usually after I post it stops the conversation. That's okay. I don't take it personally. Think I just needed to vent a bit here today. Like I said, it was a real slap in the face not to get my questions answered. To be treated in such a way. To quote some from the letter, " It is clear from your letter that you have done a great deal of research. I'd like to provide answers to as many of your questions as I am able to." (Can you imagine how excited I was, when I thought I was going to actually get answers!) The letter went on to say, "The risk of PML can be based on three known risk factors: the presence of JCV in people taking Tysabri; prior use of certain medicines.........; and length of time taking Tysabri, especially for more than two years."

ARE YOU KIDDING ME. Who on Tysabri doesn't have this imprinted on their brains!! This is not new or the answer to any one of my questions.

My frustration level is through the roof. And I give up. I just totally give up. I give up trying. Trying to find the answers. They are guarded like Fort Knox. I am on something that works, works well and without side effects. I just had #75. Glad I could get them. Will try for a few more.

Have no idea the point to this. Just venting.

Linda, really I started out just saying HI and that I always enjoy your posts.
Blame it on MS brain!

[kelm10]

LL60

I understand your frustration with the researchers at Biogen. The thing of it is, they are limited by law and I am sure by Biogen as to what they can release. The FDA has limited they can only say what is on their paperwork.

I learned this when talking to a Copaxone nurse, asking her why she did not suggest some of the things that I have read on here. She explained to me that she is limited by what the FDA allows her to release. The light bulb went off in my head then.

Thankful for forums, like MSWorld, and as you have found in the financial forums. Where we can find little nitty gritty information.

[lindaincolorado]

Hey LL60, nice to hear from you..sorry you are so frustrated. Hate those brick walls

Thanks Katie

Good luck to you tortis !

[22cyclist]

It just got the green light to go to every 6 weeks and am so excited! Now I don't have to go off of Ty at least for a while.

Thanks everybody for the research!

Lisa

[lindaincolorado]

Lisa,
I wish you WELL or at least doing well

[Tomjadg]

Hi Linda

I also was doing 8 weeks, but had to stop in December because of my high titer number, and advice from my Neuro. They were worried about PML, but left it up to me.

I'm sorry now that I stopped, as I have quickly gotten much worse. I'm just tired of this after 4 years of dealing with this 24/7.

Good luck to you.

[lindaincolorado]

Hi Tomjadg,
I am sorry you've gotten worse
If I had to go off Ty I would get as much knowledge on Lemtrada as possible and then see if it was for me. If that didn't fly I would probably go with Rituxin - it doesn't give symptom relief, I've been told, but has as good efficacy as Tysabri. I hope and pray I stay on Tysabri until a CURE

[Tomjadg]

Thanks Linda

I've been taking Aubagio pills every day, and steroid shots 5 days a month, but it doesn't seem to help, they are supposed to slow the lesions.

I honestly don't think there will be a cure in our lifetime. I would be happy if they find a correction for the damage caused. I think that is more realistic.

Stick with what works for you. It has been good so far.