Newly dx - recommended Tysabri - questions...

[onlyme]

Experienced Tysabri guy

I'm on my 87th Tysabri infusion. I'm JC negative and get tested about every six months. It's free, paid for by Tysabri. I'm unable to walk and user a scooter. I wasn't as dependent on the scooter when I started, but slowly eased into using one. I'm told that I might have been debilitated soon if I wasn't on Tysabri, but who knows.
I will probably still use it even if I become JC positive. The reason is because was told that the only reason they check for the JC virus is because that was the only thing that the original users that died had in common. They didn't know if it was just having the JC virus and being on Tysabri that caused the deaths, so they were playing it safe. I guess I'll know if that's true if I ever become positive.
Talk later.

[kw202]

I think I'm approaching knowing what my costs will be for the Tysabri. It looks like my infusion center is in-network, and with my particular private employer insurance, it'll be covered 100% plus a $20 copay from me, which I suppose Biogen will pick up. (I am still waiting on approval for their aid program.)

Which, on the whole is great in terms of the impact to my wallet, but I guess I'm going to be ending out the year buying $500 worth of first aid kits and Ace bandages with my brand new HSA.

By the way, someone in my doctors office told me that Biogen's means test is $150,000 annual salary for your household, but that they don't ask for any proof. It's moot for me (I wish I made $150,000), but anyway, apparently they'll take you at your word when you tell them what your annual household salary is - just putting that out there, if that's helpful for anyone.

[shel67]

Kw202, your story sounds like mine, kinda. I don't know how long I've had MS. I could have had it 5 years or 25... It's only been since late Jan/15 I'm experiencing MS symptoms that aren't going away.

I say that but I did have a flare in 3/14 that I know caused me some lingering effects on my balance and sensory processing (I think that's what it is) that was so minimal I did not know what was wrong, I thought it was dizziness and I was able to believe that it was't really MS just peri menopause (that's the trail the docs put me on, that and anxiety, *roll eyes*). I'm having my 6 Ty infusion next Thursday.

I began experiencing flares in 11/10 (and maybe even a year earlier) and they were very mild, non disabling. A little numbness here, a little tingling there, a little nerve twitching here, a little muscles twitching there.

Looking back I can now tell that I was having regular activity over the last 5 years but it was so isolated, mild and random, I just did not know what it was and it always revolved around the monthly cycle so I thought it was hormones. I did have it in the back of my mind that it all fit MS very well, doctors shrugged that idea off. I wish I would have pursued it and if I had I maybe would be able to tell a different story now.

But since late January last year that's when hell broke lose and this disease just took a left turn. I was hit with back to back flares from late Jan - may 2015. It left permanent symptom so far that some things have improved, some went away and some still remain.

The good news is they are still considered to be mild and any disability is so, so very mild, but the balance/sensory issues I have at certain times during the month can be borderline disabling where at those times I feel I might not be able to do my job. I do hair, which my sensory/balance issues makes things interesting indeed when there are days when I feel I'm standing on a tightrope.

But so far I've gotten through it and no one is none the wiser that I have anything wrong with me. If you were around me, you would not think I have any impairment at all. It has not affected the quality of my work either (thank God). And I have to say, I amaze myself that have been able to pull it off thus far for the last year. I keep thinking, I do not how long I can keep pulling this off.

If I have had this longer, I can only think back to a time about 22 years ago where I had some odd things occur that went away and they were just odd with no explanation. The one thing I am very curious about is 21 years ago I hemorrhaged out of the blue about an hour after the birth of my son, which to this day is unexplained why that happened. The hemorrhage just stopped just as suddenly as it began, also with out explanation. I hemorrhage again in a similar way during my monthly cycle in Jan/2011 during a series of flares I was having. Unexplained. "Maybe you're starting menopause or are under stress", says the OBGYN. I was only 43 at the time. So was that MS? I don't know and I have not asked the Nuro but I will next visit. If it is, it can happen again and I do not want to bleed to death, so I am worried about this.

I was able to receive a MS diagnosis in 6/15 and began Ty in 9/15. I'm going for #6 next week. My experience so far is, I experience no side effects what so ever and I have not gotten sick from the compromised immune system either and like I said, I work with the public. I have not missed a day of work since all this mess began last year either from the infusion side effects or the disease itself.

Now with that said I have no idea what is causing the 2 week fluctuation in my MS symptoms. I can go from thinking I just might be able to make it through life if I stay this way, to I am ready to apply for a SSD check. This is all in just 2 weeks time every month since staring Ty.

On good days I have reason to believe the TY has improved or lessened the intensity of my symptoms, on bad days I think do not know what to think. Is it a side effect of TY or my menstrual cycle causing the flux?

It's hard for me to decided because right before, meaning days before I had my first infusion I did experience a notable improvement and 3 days after infusion I felt I had another flare. That's how this month has been. Going from feeling the best I've felt so far to feeling I'm having another attack. This month... I'm having a heavier menstrual cycle then usual. Is that another coincidence?

I didn't have another flare but that's how dramatic this fluctuation was/is/has been. After 2 weeks, I feel better. It's strange and driving me crazy.

Since September, my first infusion, it's just been a roller coaster for me that is going to put me in the crazy house before this is all over.

Prior to and right after last infusion which was Jan 7, I felt the best I have felt. I even posted an update on how great I felt. A day later I was back to feeling like this was the end for me, that was the worse I felt.

2 weeks later which is right now I feel a lot better. Me being able to work my job the lest few days was very good. Is it just a coincidence my monthly cycle begins on the days I feel improved, including that day in September before Ty? It doesn't help the fact that my infusion dates are during the week of my cycle. That's just how they fall. I'm very regular, every 21-28 days. Just like Ty infusions. So it's hard for me to determine which is the pattern.

So, what Ty has done for me, I am very confident to report it due to TY, is I move better, more like a normal person and some coordination issues have improved or gone away. Like I said my stuff is mild, it's hard to pin point exactly but I just feel like I move more like myself and symptoms feel less intense.

I have no head aches, fatigue, flu like symptoms, nothing like that so far from TY. My blood work and test all been fine. JCV negative, etc.

MRI's said no new disease activity and some lesions showed some small improvement. (thank you God). So I guess that's good news for me that's it's working. Also good news, I have no spine lesions at all. (thank you God). A lot of my stuff is sensory but that it is effecting my balance and processing visual information and motion, that's not fun. Here's hoping, praying the brain will find a way to fix this mess.

So to sum it up, I am either experiencing no side effects and my symptoms have improved or the 2 week change is the TY side effect. I do not know. But that's my experience so far. The nuro, the infusion nurse, the people at Biogen said it's not usual a patient will feel better the last two weeks instead of the first two weeks. So either I'm backwards or it's something else, hormonal maybe. I will be pursing this next visit.

As far as money goes, I am receiving the drug for free from Biogen and my infusion cost is 37$. I choose this drug for myself as my first treatment because I figured this disease was morphing and I want to get ahead of it now. Nuro agreed. I just wish this would have happened a year earlier instead of when it did but, oh well, no point dwelling on it.

So that's my story, I hope it helps. If anyone could shed some light on the fluctuation I experience I'd be very appreciative. I'm leaning toward thinking it's not the Ty but hormonal changes. Is there such a thing as hormonal MS?

[kw202]

Shel, that sounds so frustrating. I can't say that I have experienced anything like MS fluctuations due to hormonal swings, but I'm still so new at experiencing any of these symptoms, I haven't quite stabilized enough to know what's "normal" for me and what's not, and what might be based on some kind of fluctuation. I'm just barely to the point where my initial symptoms that sent me to the doctor searching for answers are gone, so I probably am not the best judge.

It sounds really frustrating though, and I feel for you.

[Myoak]

Shel, has your doctor expressed an opinion about your situation or suggested alternate timing for your infusions? I hope things improve for you.

Kw, and all, please check out the link in the Tysabri Rebound thread, if interested in estimated PML risk charts.

Ru4cats! Gosh, you are nice! Is it a Montana thing? I believe I mentioned in the past that we spent two summers in NW Montana in Libby... the best two summers of our lives. We loved the state and the people.

I just wanted to compliment you on being a great person, you are the real deal. All our best.

[shel67]

Shel, has your doctor expressed an opinion about your situation or suggested alternate timing for your infusions? I hope things improve for you.

I went for #6 today and the care point nurse is going to call the doctor and see if we can experiment with extending the next infusion to 5 weeks or 6.

She said this was odd. She said she had not heard my type of story from the other patients.

[shel67]

Oh and the opinion the doc expressed was some women complain they feel worse due to the cycle, go to GYNO and check into B/C pills that may stop the highs and lows of hormones.

So I may do that. See if we can manipulate hormones if this is indeed hormone related. If anyone knows anything about NFP- natural family planning, I feel worse during the fertile period and better during the infertile times and much better during the presumed infertile time, which is during the cycle. I know, this is TMI but what you gonna do?

[kw202]

Here I go! Tomorrow is my first infusion. Looking forward to getting it out of the way.

[kw202]

Here I go! Tomorrow is my first infusion. Looking forward to getting it out of the way.

Whoops! I meant Monday. Please don't let the weekend go quite that fast.

[shel67]

lets us know how it is. Wishing you the best.

[kw202]

Whoops! I meant Monday. Please don't let the weekend go quite that fast.

Had my first infusion yesterday. All went fine.

During the infusion I felt a bit of a head rushing sensation, but by the time I left that had diminished to a bit of pressure behind my eyes, and soon after, that was gone too. I did feel a bit tired right after the infusion, but the saline drip seemed to have fixed it - I did go to bed a bit earlier than I would have normally as I was quite tired by then, but it was all manageable.

Today I feel completely as usual. Hoping this will be all the side effects I have on Tysabri.

[shel67]

keep us posted if you feel any changes during the month. It's been a week since my last infusion and I'm in the midst of feeling that weird head swaying. It's weird because underneath that I feel better. Improved.

[lindaincolorado]

I wish you Tysabri newbies well
Good luck on your new journey

[palmtree]

PLEASE DO. PLEASE DO. PLEASE DO.

When I was diagnosed I read about Tysabri and decided it was the drug I wanted. But, at the time, patients had to prove the ABCs weren't working.

I faithfully did my Avonex shot once a week but two months later I developed ON. Two weeks after that was a major major flare. My neuro spent an entire day on the phone with Biogen to prove that my case was serious. They put me on emergency Tysabri? It took 6 months to start feeling more normal again but the damage was done.

When I was first diagnosed I was still very functional, walking, living a full life. If I could have stopped the progression at that point I think I could have carried on as normal.
But once the flare came, the damage was done. I had to get a cane, I was numb in my feet, memory problems and a fatigue you can't imagine. Not to mention the wonderful bladder and bowel problems.

Don't let the damage start. Yes, there is the concern for PML but if MS progresses, you might as well have PML. There is still more good news. Ocrelizumab might be come out soon like 2017. It is as powerful as Tysabri with less risk.

You are so lucky! SEIZE THE OPPORTUNITY TO SAVE YOURSELF FROM MS
Go on Tysabri and switch to Ocrelizumab. You've got it made. The expense is not something to worry about. There are plenty of assistance programs.

PLEASE GO ON TYSABRI. PLEASE DO. PLEASE DO. PLEASE DO.

[JerryD]

Some of us have better luck with the drugs . Generally, I don't. Every time I get involved with a new prescription, it doesn't help me. I think using Tysabri is 'russian roulette'. I won't go that route. I spoke with my neurologist, yesterday, and he said that Ocrelizumab is not truly a new drug. It is an updated, reformulation of an older drug, Rituxan or Rituximab. My neurologist doesn't have any faith in it. That's my two cents ! Good luck