Hi Brenda,

I'm sorry you are feeling so down tonight. I'm sending you positive thoughts. :hug: :hug: :hug: This is such a stinker of a disease. Does the neuro think the MS is progressing because you have 2 new lesions? What if you were not on Tysabri -- is it possible you might have developed 10 lesions or 15 lesions? Perhaps the Ty. is working to some degree. I hope you do okay with the antibody test. If you're feeling crummy just remind yourself that pills are about to come out soon--in the next year or two. There are lots of drugs in the pipeline. I see hope in your future. I have a file full of websites I go to when I feel down and need a pick me up -- they all involve positive news about future research and drugs. If you need some, PM me and I'll send them along! And there is some good news. You are having minimal clinical symptoms STILL.

Take care of yourself,
Natalie

Hey RW -- When you've got the time, can you send those articles to me too? Many thanks! :) :)

I'm doing a little better this morning, but still slightly weepy. Maybe I need those ADs again! It was just so unexpected, and pressures at work were awful yesterday, with no end in sight!

I had just come from a meeting that didn't go quite as I planned, then I get out to a call from the nurse. I was expecting good news from the MRI, and when it didn't turn out that way - well!

I'm not going to worry too much until I talk with the neuro on Thursday. It could possibly be that those lesions came during the 2 months of transition between Rebif and Ty. It could be that like Natalie said that I would have been a lot worse on something else!

The neuro said to still have my Ty next week because he won't have the antibody test back before then. He knows my bloodwork is good, I have that done every three months.

And I knew the insulin resistance would probably be in my future because of the 25 lbs. I've gained since being diagnosed. I walk almost every day for a good 40 minutes, and I try to watch what I eat. But reading about insulin resistance, all the things I crave are what I should be avoiding.

I'll get through more meetings today, and maybe I can get work to back off of a project I'm in charge of because the timing is just bad with the economy. If I can get them to hold off until summer, instead of pushing ahead too quickly, that will also help my mood!

Thanks for caring guys!

I was a bit surprised by their statement in last Friday's conference call, that they would not expect to see disease progression in patients that use Tysabri:

"There have been a few patients who have received plasma exchange in the U.S. in the case before full confirmation. But in a sense that is consistent with our advice which is to suspend TYSABRI dosing unless PML can be ruled out. Any kind of relapse activity or disease progression on TYSABRI is extremely uncommon because the drug is so effective.

So we're advising physicians to be very vigilant. If you suspect PML, stop dosing and some patients have even gone so far as to get plasma exchange, even before full confirmation. Dr. Alfred Sandrock"

http://seekingalpha.com/article/1190...nscript?page=7

Did your neuro happen to mention whether they were "enhancing" (i.e. "active") lesions, or not? If not, like you said, they may very well be from before you got on Tysabri.

Good luck on Thurs.

Cherie

My first question will be were there any enhancing lesions on the MRI. The nurse just gave me a little briefing over the phone, so I didn't get any great details.

I'll go in tomorrow and talk to the neuro, and then get the antibody test done after. Then I'll go from there!

Sorry about the test results. :hug: I hope they aren't enhancing lesions. I'll be thinking of you.

If one believes Biogen's stats stating that the reduction of risk in disease progression is reduced by 68%, then what about the remaining 32% for patients??!! I hardly doubt that 32% qualifies as "extremely uncommon"!

It's comments like this that really irk me about Tysabri or any other medication that big pharma markets.

Harry

It's not the risk in disease progression that is reduced by 68%, Harry, it is the number of relapses that is reduced by 68%.

They really don't expect to see disease "activity" in the way of lesions popping up or getting bigger while people are on Tysabri. Some % of people are ALSO seeing a reduction in disability accumulation too, but having very little lesion activity is what they are measuring to determine "disease progression".

Cherie

Just got back from neuro. Good news in that they were not enhancing lesions, so I haven't had anything go on in the last 6-8 weeks. He said the new lesions possibly could have come before I started Ty, that we only know that I have 2 more since my last MRI.

I went and gave blood for the neutralizing antibodies, but won't know the results for several weeks. I'll have my next Ty as scheduled next week. If the NABs test comes back negative, I'll just keep on keepin' on with Ty. If it is positive, then I can either quit Ty and try something else, or keep on Ty for an additional 3 months, have another NAB test and see how it looks.

I'll make that decision later after the results come in.

I'll be seeing another doctor for the insulin problem. But I'm feeling much better about things today!

Hi Cherie,

Got my numbers crossed.....the Affirm trial showed a 42% Reduction in the Risk of Disability Progression and Sustained 67% Reduction in Relapse Rate. That would mean that 58% of patients could have disability progression and 33% have relapses.

For some docs to say that it is extremely uncommon for MS patients to have disease progression or replapes while on Tysabri is really stretching it, don't you think! Just reading comments on other MS Forums from some patients on the drug seems to negate that kind of statement.

Take care.

Harry

So a question for those of you on Ty. Anyone have follow-up MRIs that showed more lesions?

My DH would just like to have a baseline to go from. The neuro wouldn't give him a definite answer for the question is two lesions too many? He prefaced it by saying that he realizes any lesion is too many.

But he wanted to know do people on Ty have on average, no lesions, 2 or less lesions, or more than that typically after being on it for a year.

I was only on it for 10 months, so I realize the 2 lesions could have come in the transition phase, and I'm waiting for my NABs test.

But it would help my DH to know if others have had more than 2, or if I'm just special!!

I had infusion #8 this morning (after having to wait 2 additional weeks since I had a cold with cough and fever). I was worried that going 6 weeks was too long but it did not seem to matter.

My usual time is 2 pm but today I had to arrive at 8 am. Since I'm a night owl that was painful! :eek: I fell asleep for almost all of it. I then went and ran some errands, came home, lay down for a nap at 12:30 and fell asleep until 6:30!!! I'm awake now and feel great. No residual side effects like after some of the other infusions.

This really would be the most absolute perfect drug if there was no PML risk. But even so, I'm willing to take the risk. I have quality of life, I can do my job and function, I don't have to bother with shots, I don't feel sick from the meds, MS doesn't dominate my life because of the Ty., and my 6th month MRI showed nothing had changed. :)

4boysmom --- I haven't been on it for a year so can't answer your question. Good luck with everything.

4boysmom,

I've had a couple of MRI's and both have been clear. I don't tend to get a lot of brain lesions though. I hope that helps!

Natalie,

I agree with your viewpoints regarding Tysabri. :)

I get my next infusion on Wednesday morning, #23 I think.

Hi Wiz,

Out of curiousity, have you ever had a MRI of your spine? Thanks.

Harry

Hi Harry, :)

No MRI of the spine, but there's no need. My walking and strength have improved. I still have lingering old symptoms but not as bad. I think the Tysabri is doing a good job for me.

I hope you're doing ok. :) You should check in with us outside of the Tysabri posts. Let us know how things are going for you.

I had an MRI during the month before I started, one at 6 months and one at 18 months.

The first showed "numerous lesions, many enhancing". I did a course of oral steroids in the month previous to starting Tysabri because of that MRI. (orals because I was away for three weeks before my infusion and had to be able to take the steroids while away, I think it was a total of 3600 mg in three days)

MRI at 6 months showed no new lesions, no enhancing lesions and a sizable reduction in the size of several lesions and some lesions resolved as in gone.

MRI at 18 months showed stability, no new lesions, no enhancing lesions and further reduction in size of large lesions.

I should be due for another one pretty soon here since I am up for # 24. So far, so good.

Glad to hear it all went well Natalie, even if it WAS at an ungodly hour of the day! (I work nights so I know just how you felt!)
I also agree with what you said about Tysabri. It has allowed me a quality of life that I didn't have before and wouldn't have now, and at this point the only downside is the PML risk, but I don't worry about it. I'm too busy living life! :)

Yes my Tysabri Twin! It is # 23! :yahoo:
( Wiz and I started within a week or two of each other! She's just a lil behind!) :p

Hi again Harry,

I just re-read your post. I've had MRI's of the cervical spine in the past (three times, after relapses) because my legs and mobility and some other things warranted a check. There was a small lesion on the cervical spine and some narrowing too as the neuro pointed out to me a few years back. All of my bladder symptoms have pretty much disappeared since starting Tysabri as well. My main issue now is fatigue but I'm learning to manage that reasonably well.

Wouldn't it just be hilarious if we lived close by and we could infuse together? :D We'd be laughing so much they'd never get the needle in place.

But seriously... I did some major gardening last summer and that just thrills me to no end. :) I'm really anticipating getting out in the dirt starting about mid-March. I'm putting in a row of asparagus for starters. :Starvin:

Condition 3-months off of Tysabri
 

Here are the updated graphs of my physical condition after being off of Tysabri for a few months. Note that I have not started Rebif yet because a "hidden" cost has arisen, and it is as high as the Tysabri cost issue. Alas, nothing is free unless you are already destitute according to the pharmacy.

It is time to just press onward and see what can be done with the assistance programs the I listed in another thread.

At least I have a pulse and I am still able to collect data!:)

LOL

-Vic

Hi Wiz,

The reason I asked was because after having the disease for some 35 years, Marg had little if any brain lesion activity. Yet her condition really slipped in the last 3 years of her life. An autopsy revealed a huge amount of spinal cord lesion activity yet they never scanned her spine...ever!

BTW, I am doing very well these days...have met a wonderful new lady friend and enjoying life again. Take care.

Harry

I hope you can get the Rebif at a reasonable cost Vic. I'm glad your mood is good and you're still hanging in there. :)


Sometimes I wonder Harrry, about those doctors who don't do spinal MRI's when oftentimes there are so many symptoms that would make it be the logical thing to do. :confused:

I'm happy to hear about your new lady friend and that life is good for you again. :)

Vic, Drat! :mad: Are you telling me you are still struggling with the cost issue again? That is crazy stuff -- infuriating too, I imagine. I'm glad to see that you are still thinking positively. Thanks for sharing the graphs. Good luck getting the Rebif issue straightened out. We miss you around here. :)

Wiz - My prediction is that it will work out fine, but it may take just a little more time.:)

Natalie - I think that we can resolve this issue. No worries needed. (I did stay at a Holiday Inn Express last night, so I can get this done.:D)

-Vic

I had infusion 23 yesterday. It went pretty well but I've been in a down mood the past week or so. I think it's the lack of sunlight and exercise.

Anyway, there's this form I fill out at every appt and I listed that I've had anxiety due to work issues. So the neuro asks if I'd like to talk about it. He's such a good listener and truly cares about his patients. Anyway, he mentioned how women can talk problems out or cry to release anxiety (saying it's usually easier for them than for men to do this). So I get teary eyed and he notices right away and hands me the box of tissues. It only got worse from there, the water works were on.

He kept talking to me and it helped. But my main concern was stopping my tears. I hate it when I cry in front of anyone. :rolleyes:

Also, the nurse was having a rough day so the other nurse came in to help with my infusion. I always look the other way when they work on the infusion site because I don't want to make them nervous. I didn't notice that they started the Tysabri. She'd started me on saline then went to mix the meds. I was thinking I was still on saline. She assured me that it was the Tysabri. That's what they were doing when they were working on my arm together.

I think I'd been distracted about my work problems that have been eating at me for awhile. It scares me when things like that happen though, like it's worsening cog fog.

[B][SIZE="6"][/S
I will be getting my 5th Ty infusion this week. I went for my 3 month neuro appointment after starting the drug. I am my Drs only Ty patient. Both he and I were both pleased with how I am doing.

Wishing you all well.

By the way i found out from Touch that it is a requirement that certain ?s be asked before each infusion. They said before any infusion site is included in the Touch program FDA requires they send out someone to go over the protocol. If you recal the last site i went to that was only temporary asked me no ?s barely spoke to me till I got itchy and she noticed me scratching. I am back in nj and will be infused this month at my original site.

good luck to all
laurie f

Hey Wiz,

A lady on another forum started a thread this morning ... she mentioned that she's been on T for a while (12 mo, I think), and she has fallen into a depression. She called Biogen and asked if this is a side-effect for some people, and was told that about 19% reported that. She asked if anyone else has noticed the same thing, and so far one other lady has said she had to go off after a year for that very reason (otherwise T seemed to be doing her well).

Feb is always a "downer" month for me too, so you may be right that it is just a bit of SAD combined with stresses from work. I just wanted to mention it though, cause I had never heard of that with Tysabri before. :confused:

Cherie

Hi Cherie,

I've had winter depression for about the last 5-6 years so I don't think it has anything to do with the Tysabri. It's actually not as bad this year because I haven't had to increase my Cymbalta yet. If I just get myself up and moving that seems to help. I just needed someone to give me a little nudge to do it though. I seem to fall into a self-pity mode this time of year and if I look at it objectively I can deal with it ok. The neuro helped me to do that this time. :)

Funny you should mention this. I believe the Tysabri has exacerbated my depression. I've struggled with depression for almost 2 decades so I'm very attuned to any shift or change in my mood. I was doing fine and stable but I've noticed creeping depression since I've been on the drug. I don't want to go off Ty. and I cannot increase the dose of the AD's I am on (I am so drug sensitive it's a miracle I've found drugs I can tolerate). So I've started taking fish oil which has helped a lot (this surprised me!). Now I just need to get my lazy butt to the gym! Exercise helps just as well as AD's, at least in my case. After one infusion, it was particularly bad and scary--a sort of super wave of heavy black depression that seemed to come out of nowhere but the really bad stuff let up after a few days. In general, though, I'd say it has had an effect on my mood that I'm not really happy about (no pun intended!) :p

Natalie,
I have been doing Leslie Sansone's Walk at Home DVDs every morning and found they help my mood immensely! You don't have to get dressed up and go to the gym, just workout in a small room.

You really work up a sweat, and I've lost 10 lbs. since starting them. I'm better balanced, more energetic, and it is just a walking program with side steps, kicks, knee lifts, and adding arm movements. It is just paced quickly.

Anyone who needs to exercise might take a look at these!

Thanks for the recommendation! It sounds great. I could stand to lose the 10 lbs that I put on from the steroids -- how come that steroid weight is so hard to get off?

I have SAD in Feb every year, so even if it was due to a drug I was on, I'd probably not even figure it out till mid-Mar. :D

Hopefully the sunshine and flowers of upcoming Spring will improve our state of mind. :)

Cherie

Treasure trove of Tysabri (Natalizumab) Info to be presented at AAN 2009
 

Click the link

http://www.aan.com/go/science/abstracts

Login as a guest and type in Natalizumab in the search box at the top. In general, the data in the abstracts looks very positive and 1 of the abstracts on page 4 discusses a test (assume blood) that may correlate with immune function - maybe they will have a blood test to identify those at highest risk for PML.

Hey everyone! Hope y'all are doing well!
I missed # 24 Thursday after holding a perfect record up to now.

With all the stuff I have going on, the doc and I decided that I'll get # 24 at some point in the next few weeks after we are sure all the bugs are clear from the ruptured appendix.

I'm on heavy duty antibiotics and other meds and since there is no precedent for some of what I have done in the past week or so, we don't want to add any more problems to the mix!

Glad to see you up and about postinig, RW.

I was reading the information submitted for the upcoming AAN meeting scheduled for April/09, and noticed a topic called:

"Natalizumab Therapy, Surgery and Post-Operative Infectious Complications"
[P02.134], Tuesday, April 28, 2009 11:30 AM
Mark Gudesblatt, Myassar Zarif, Barbara Bumstead, Joshua Loewenstein, Anne Dunne, Lori Fafard, Laura Graffitti, Carol Seidel, Lourdes Cruz, Chris Burke, Serina Fahie, Joan Bohuslaw, Patchogue, NY

The conclusion of the study, which included 20 people who had one (or more!) surgeries over the 2 yrs, was:

"No MS patient receiving Natalizumab who underwent surgical treatment had any postoperative infectious complications. No patient required or experienced interruption in treatment. Surgery can be safely performed in MS patients receiving Natalizumab".

Hopefully that means you can back on track fairly quickly.

Cherie

RW, glad to see you are back. My problem pales in comparison to yours but I have a question about Tysabri and infections. By the way, I think I read in the literature on Ty. that a few people have had issues with their appendix! :eek: Hope you get to feeling better soon.

Has anyone here had a tough time getting rid of a bacterial infection while on Tysabri? I started out with a cold and cough. The cough and fever never went away but the cold did. I started an antibiotic while still having the cold. I thought I was feeling better but wasn't sure. I stopped the antibiotic and within 2 days I felt horribly sick--fever came back much worse, chest pain, coughing even worse. I was sleeping for hours upon hours. The doc. said my chest was clear though. He asked me if I wanted to wait and see (in case it was viral) or try an antibiotic again. I went on the Z-pak antibiotic. Within 24 hours my fever was down to normal and my coughing was much better. Anyhow, I am coming up on the 5th day (last day) of the Z-pak antibiotic. I feel WAY better but not totally well--still an occasional cough, occasional itty bitty fever that comes and goes but nothing high like before and a bit of a sore throat. I fear if I stop the antibiotics this infection will coming roaring back. I'm so tired of being sick -- going on 5 weeks.

Is the Ty. making it difficult for me to kick this infection? Has anyone had to do multiple rounds of antibiotics just to get over something while on Ty. or any immunosuppressant drug for that matter? Perhaps I am just panicking because I have been sick for awhile and I'm afraid this bug will never go away.

CEDAC recommended listing Tysabri last week
 

Cherie,

Canada's CEDAC recommended listing Tysabri last week. I believe Quebec has already listed it as a reimbursable treatment option. May soon be reimburable in BC.

http://www.cadth.ca/media/cdr/comple...ry-25-2009.pdf

Chris

Thanks Cherie, I haven't had a chance to view the AAN abstracts since I think they came out around the 20th, which is when all my stuff started. I hope to be back up to snuff soon but I'm just taking it slow right now and healing.

Oh yuck Natalie! I am of the mind that you just didn't kick it. I'm always suspicious of short courses of medication, to me it's like the one day yeast treatment, too short a treatment. If I have to take it I want 7 days or better to be sure the bug is dead!

Welcome back RW! :hug: Get well soon and keep us posted on your next infusion date.

Thanks Wiz! :hug:
I am hoping for two weeks or less, but it's up to the doc at this point. I truly hated not being able to have it because I want to be one of the success stories who stays on track. I'm just an overachiever!

We COULD end up back on the same schedule again!;)

Riverwild

Welcome back hope you are feeling better.

I am very happy to say that i did have my 5th infusion. All went well after the iv was finally started. That took 4 sticks. No problem with blood draw but then it came to starting the iv one person tried twice and said no more next one was successful on # 2. Anyone else have thsi problem. Last time took 2 tries all others just one. Because i was itchy last time he gave me Benadryl before the infusion but said next time take Clariton before i come. It does not make you sleepy.Last infusion was in Fl so he did not know.

Good luck to everyone have a great day.
laurie f