I haven't switched yet, waiting for my next appointment to talk with the doc. I have mixed feelings about the 8 week schedule. he doesn't seem to be in any hurry to switch me to the extended dosing, I think maybe he just didn't want me having it early anymore, even though I have gone as much as four days early, when I was going to be away for an extended period of time. :cool:
Maybe I don't have to give up the reins just yet...:p

Hi River!

And Hi Nat!

Older person med study
 

I met with my neuro Thurs. He is starting a study for older msers to see how they do without meds. He believes meds are not necessary as we get older and has now been granted $$ to do the study. He knows I believe if it ain't broke don't fix it and therefore, do not choose to give up Tysabri. He is my ms partner therefore, fine with my decision. By the way I turned 67 in Dec.

I have been getting infused less often; first every 6 weeks, after a few months went to every 8 weeks. I have been doing this for approx a year and thank G-d am doing well. There have been NO pml cases for those who have stretched out their infusions :D

Happy New Year!
Linda

I have been attempting to figure out my # of infusions:confused: I thought it was more than I now "think". I'm using this post to help me keep track of me;) I went every 6 weeks for approx 8 months and every 8 weeks for 10 months. This site helped me figure this out as I was able to back to when I started the 6 week program
.
YAY NeuroTalk :D

107 infusions as of 3/1/16 and started my 10th year 10/2015.

Goodness I can be **** :o

Hi everyone, I know I haven't been on neuro for awhile.

Been working with a new neuro, the first meds had bad reactions. Now he wants to try Tysabri.

My blood work came out neg. for the virus. Thank God. I am still not sure what to do. Reading all the posts are helping me make a choice of what to do.

I am looking towards trying it. When he showed me the difference of my MRI from just 6 months and now there was a big difference. The brain was showing more larger wholes, which he explained this is what happens in the brain also when leading to Alziemer. This is very frightening. Having one disease to fight and the fear of old age problems. I pray I make the right choice.


Jappy

Hi Jappy. Good luck with Tysabri !!:hug:

Hi all,

Just thought I would check in and say hello. I am still around! This July I will be on Tysabri now for 8 years. I haven't had a relapse (knock on wood!) I get my infusion every 7 weeks. I'm thinking of switching to every 6 weeks because I start to get very fatigued that last week.

I hope everyone is well. I haven't been around much in the forum because I've been busy with life and my job. I'm just plugging along..... :)

Natalie

Well howdy folks!:Wave-Hello: Long time no see!
Hope everyone's doing well! I know I am!

Let's catch up, shall we? Lots of stuff happening in my life right now!

The company I worked 27 years for went bankrupt abruptly back in Feb. and left both employees and clients hanging. I stayed on through the transition and just received a "thanks for helping out and see you later" letter today. I am laid off as of the 21st. I wish it had ended a back in May like they told me it would so I could have had the whole summer off and then I realized I can go chase summer now if I want to! I'm excited to see what's coming next at this stage in my life! All I have to do now is convince my neuro and Biogen that I can do my own infusions so I can hit the road and see the world. Anyone had any luck doing that yet?

I lost insurance back in Feb. and ate the cost of one infusion and then skipped one before I was able to get insurance through the ACA (Thank You Mr. President!) and got back on track. Still on the every 28 days schedule, my neuro decided against changing to a longer interval and I had no ill effects from the missed dose. I have an HMO for the first time in my life and that was an eyeopener! Holy Cow! Bless you all who have had to deal with the idjits for years. I finally found a lovely GP and she has accepted that I have my own mind and works extremely well with me after minimal training. :D

I lost track of # of infusions off the top of my head but whatever the number is when you started in May 2007 and missed two infusions is where I am at...LOL!

As usual, no signs, no symptoms, no relapses, nothing except the spasticity and fatigue that I won when Tysabri was off market wayyy back when.

Life is good.:smileypray:

HI SAL!:hug:

Nice to have heard from you Riverwild!
I am well/doing well and glad to hear you are. I'm getting infused every 56 days.

Sorry about a company you worked for 27 years going belly up :(

I have been in a long distance relationship for a little over a year :D Traveling quite a bit, so's he ;) guess that's what a long distance relationship is ! Life is good.. better if he'd move to CO :)

Enjoy the rest of the summer!
Linda

Hi all!

I'm checking back in briefly since I don't come here so much anymore. I went from the 7 week to the 6 week Tysabri plan in the summer with the heat and I felt MUCH better. That last week before the next infusion was a bear to survive in over 100 degree temps. But now that winter is coming I may jump back to 7 weeks.

Still going strong with the Tysabri. What a miracle drug. I've had MS for 9 years now - that seems so strange. NT was the first forum I joined and it saved my life.

RW - can't believe you lost a job. Yikes? The question mark is because you seem to be taking it so well. I'm glad you were able to stay on Tysabri. I hope life is treating you well almost 3 months after your last post.

Linda - congrats on the new relationship!

HI SALLY!! :hug:

He's moving to CO:D It's for a few months, testing the waters (snow :)). YAY
Happy Thanksgiving Everyone !
Linda

Last Thurs I had #112! Still infused every 56 days.
Thank G-d and Tysabri I am stable :D
Linda

Jan 31st was #113..YAY Tysabri for me :D

My significant other has been here for 3 /12 weeks. He, me and Thomas kitty cat are adjusting;) My health has had an issue or two as I have experienced stress! Oh well.. hopefully it will be worth it and it appears the stress has passed !

Linda

JCV test
 

Me again;)
My Dr orders a JVC test every 2 months for me. For a couple years I have been in the indeterminate range of .22 to .26. I rec'd my latest #'s Fri, .19 which is negative?? I emailed my Dr's office asking what this meant. A short time ago I received the reply saying that overtime the body can rid itself of the virus since, my #s were so low that's just what my body did :D This also explains why I've heard of someone's #s going down !

Since I go to the RMmsC I'm inclined to be a believer !

I am excited for this news and wanted to share!

Linda

Jumps through the door and peers around...:D
Howdeeee!
Stopping in to report that I'm alive!
It will be 10 years on May 25, 2017 since I started Tysabri.
I am still JC negative. I've had no relapses, no signs/symptoms and no problems since I started way back when.
I've missed two infusions since I started, one for appendicitis and one because of insurance.
I'm off all meds except the Tysabri and MMJ
I am now a full time college student, my full time job ended because my employer went bankrupt. I am back on the river in season and in college all the time, trying to complete my degree in a year (yes, I'm crazy)
I'm hoping to come out of all of this with skills that will allow me to take to the road and travel, while still doing some sort of work to add to the money pot.
The very best thing about being in college (besides the learning, that is) is ...wait for it...
STUDENT HEALTH INSURANCE! LOL!
Gold plan, PPO, full coverage, low deductible and copay and much lower premium costs than the plan I had through the government.
I may have to be a student forever...
Hope everyone's doing well! :grouphug:

Glad to hear that you are negative!!
I never showed any antibodies, every test comes back 0.0. I still don't know how I didn't have any exposure to the virus, having lived all over the world as a kid.

JCV; went back to positive/indeterminate .25. I'm grateful it's low.

Pretty sure I had #114

Been with my significant other for over 3 months :) It helps that he was my first BF in 1963 till 1966. We have history/memories and the present! Life is good:)

Glad to hear Linda that you are back into the indeterminate range! Congrats on the lengthy Tysabri journey. Sounds like life is great.

Yeah for college Riverwild!

I just had an infusion a few weeks ago. I've lost count now. But I started in July 2008 - so I'm going on almost 9 years. Knock on wood - here is for many many more!

I haven't been checking in regularly - I can't believe I joined this forum 10 years ago! I wanted to update the forum in case people still visit. I always loved everyone in here.

I was at the nine year mark to the month for Tysabri when I was diagnosed with cancer. I had surgery and started chemotherapy. But my neurologist said that I needed to go off of the Tysabri. My sense is that I will not be able to go back on the drug because of all the chemotherapy medications which obviously suppress your immune system. I am still JC virus negative. I have no idea what I will go back on when the chemotherapy is over. It was emotionally crushing because Tysabri has been my lifeline for so long with zero relapses.

Anyhow I guess it's good news there are more new drugs out there these days. Anyhow it was a good 9 year run on Tysabri. I'm going to miss that drug.

Natalie,
:hug: I wish you my very best..
Linda

Natalie, I had no idea this was happening to you and I pray that you stay symptom free during your treatment and are able to get back on Tysabri if you can. I know how well you have been while being treated with it.:hug:

I had a lumpectomy, fortunately it was just atypical cellular growth but it was suggested that I go on Tamoxifen, due to family medical history of BC. I had unbearable side effects from it so it was discontinued. I am just supposed to watch and test and mammo until the girls are flat or gone.

Sadly, I too have been taken off Tysabri for now. I tested positive for the first time in ten years for the JC virus antibodies. The doc thinks it is a false positive but due to circumstances beyond my control, I have no insurance at this point and cannot afford to retest.

My fiance took his own life while I was away visiting relatives in June and I am just now coming out of the fog of his loss. I found him when I came home, and believe he took his life less than 8 hours before I got back, after following the clues he left. We had a memorial service for him this past Sunday, and one in his hometown out of state in September. I am learning to live on my own again after almost twenty years with him by my side, and it's not going that well.

I had the blood test for JCV a week after his death, my insurance was done shortly afterwards and I just didn't care at that point. I canceled all my infusions (scheduled six months ahead) and other appointments, barely finished the college classes that I was in, withdrew from two, passed two and just gave up on one and took the F.

So here I am, not a very positive, upbeat report this time, eh? I have no job, no insurance and just don't care right now. I imagine I will wake up at some point and get myself together, but it's not going to be today.

Love to you, and filled with hope that you will get through your troubles,and come out clean and free of illness.:grouphug:

:hug: River :hug: I am so very sorry to hear about your fiance. I am so sorry you had to go through all that you did. I can relate to it in a way. Having the rug ripped out from underneath you like that makes recovery slow and hard. Wish I could give you the fast forward version of getting through it all but there's not one. I hope you are doing well and have someone there to talk to. If not just come on the forums here and you'll always find someone. Please take care of yourself.

Love,

Kitty

:hug:

:hug: Natalie :hug:

I am so very sorry to hear of your cancer dx. I hope the chemo does it's job and you can find something for MS that's as good as the Ty was for you.

Please take care of yourself. :hug:

Love,

Kitty

Riverwild,
I am so sorry:hug:
I wish you my very best!
Linda

When it rains it storms doesn't it? I'm so sorry to hear about this awful news. No wonder you barely made it out of classes. The positive JC virus must have been a shock, followed by another shock of tragic proportion. I had a parent commit suicide. All I can say is you will get through this eventually and come out on the other side. I'm not saying it's easy or quick but you will make it. In the meantime it hurts so much and you are left numb to the world. I'm sending you all the positive energy and thoughts in the world.

Tamoxifen can be awful I've heard. No boob cancer for me but it did involve surgery that was highly intense. And I think to myself, really universe? You had to give me MS and then exactly 10 years later give me freakin' cancer??

I worry about your MS. Is there nothing you can take with help from the drug companies with free meds? My doc thinks the chemotherapy will keep the MS quiet because it suppresses your immune system. The question is what to do next? Sigh.

Anyhow all I can say is :hug: We will get through this.

Natalie and RW,

I just keep thinking about you:hug: I wanted you to know you are in my thoughts and prayers..

Linda

Thanks Linda. My last chemo is coming up soon. I survived it! But the oncologist is insistent that I don't go on any immunosuppressant drugs because she fears the cancer will come back. The only ones that don't fall into that category are interferons and copaxone. And I can't tolerate either. :( I don't know what to do. It appears the choice is cancer or MS. Quality of life v. Quantity of life (yes I had a bad cancer that often comes back). Anyhow, just have to keep plugging on.

Tysabri side affects
 

I go for my third infusion on Monday but I’m kinda nervous about how agitated the infusions make me. It is so bad that I can’t even stand myself. Everything bothers me. My husband who is wonderful and so supportive of me puts up with me even though I’m mean to him for about 10 to 14 days after my infusion. After my first infusion I had a horrible headache that lasted about one week, so on my second one they Gabe me an injection of Toradol (think that’s what it was). It helped with the headache but I still had the strange feeling of pressure in my head as I did after first infusion. The pressure is not painful, it’s like my head is stuffed down to my neck. Sounds weird I know but it’s the best explanation I can give. Another thing I noticed is that my teeth kind of bother me too. They seem to be more sensitive to chewing and coldness. Smells bother me more as well.
So I’m wondering if anyone has experienced any of these symptoms after starting Tysabri?
I was dx nine years ago. Have been on Copaxone, Aubagio and Gilenya.
Like all of you I have day to day symptoms. I am mobile. MS has affected my cognition horribly. Have had all the neuro psych battery of tests which proved to SS that I wasn’t able to work.
Anyway, that’s me in a nutshell. 🙏🏻

All these years later & i'm still on Tysabri. Started 2008 or 2009.
Last month was 1st missed dose because neuro closed office without notifying his patients. My Ty was due for 6 month renew. Hope he rots in ----.
Got another Dr to get me back on it asap. Got infused 2 days ago.
Came here to say that & getting mild heart palpatations as i type.
Hope going 2 months between infusions didn't hurt besides increased numbness.

Back in another 10yrs lol.

Hi EddieF,

Though I'm not on Tysabri, I'm pretty sure you're not supposed to miss a dose of it. I'm glad you found a new neuro but shame on the neuro who disappeared on you.

If you can contact that neuro's office, you might be told that "All our patients were notified" about his move. I've had a doctor's office do that to me--they moved and I turned up for an appointment, only to find that they were no longer there and had moved. No one had told me. When I located the new address and asked why I hadn't been told, that was the answer. In other words, I was expected to just get over it.

I suspect that doctors sometimes want to dump some patients and this is one way of doing that. But I can't prove that.

As for the heart palpitations, I get those when my potassium level is getting low. I can always tell when I'm in trouble with the potassium level because of the palpitations that come on. That just might be your problem too though there can be other causes. If you haven't had that blood test done recently, it might be a good idea to have potassium checked.

Hi agate. Thank you for input, glad to say the heart palps stopped that day.
Yes, missing dose is bad news i've read. I'm good now, dr put his dr hat on & saved his patient.
Neuro that closed office, it'll catch up to him. Glad he was an hr away, i didn't like putting all those miles on my car anyway.
Cheers & here's to hopefully another decade on Ty.