Daisy, I would get infused then push a mile in my wheelchair or swim 15 laps. It's nothing.

I set appt to see neuro wednesday because I forgot what nightly Copaxone inj were like and Ty's painless. I'd love to do Ty one month, Copaxone the next, rinse repeat and i'll ask but good luck. I KNOW a little of both would help me but it's not allowed. That or i'll stick with Copaxone for 3 months and go for Novantrone next week. I didn't know you had to take C while on Novantrone. That combo worked wonders on a lady at MS group. She's still in remission 4 yrs later after the 2yrs of N but she takes C every night.

I had my first infusion this morning. It took four sticks to get a vein, and I ended up having the infusion through a small (butterfly) needle! Other than that, It went okay.....I am just tired and have a headache tonight.

This is great info, thank you!!
 

I just stumbled upon this site and I'm so glad I did! This is great info, thanks so much to all for sharing!

I have had 2 infusions (and the JC test (neg) didn't know that put me in a long term study:rolleyes:) and so far so good. I got wiped out (fatigue) for 2 days after the first one, 1 day after the second. I definitely have more pep and the first month felt like my walking was better (more leg strength) but now that's not the case, as I seem to overdo it everyday due to not being as fatigued (work ft and have a 4 yo, husb travels sometimes).

The infusion itself is easy and I find it MUCH more comfortable and easier than steroid infusions. (no bad taste and no drastic effects on my body, plus I swear it just "feels" like a smoother solution somehow). While I'm a fan of C over the others, I definitely like not having to inject every day :) (needle-phobe). Biogen sent me a fleece blanket and I was like "whatever" (charge less for the meds and lower your marketing budget!) but I do get soooo cold during the infusion and for the rest of that day, so I brought it to the second one and it did help me stay warmer. Keep in mind, tho, I'm in MN and we are having a very cold winter....that doesn't help!

I do have a question, and that is, I wonder if anyone else experiences, or knows someone who does, eczema or skin rashes from the med? I'm not talking about an allergic reaction (called my neuro and confirmed that). About day 3-5 after and for the next week to two weeks, I have terrible difficulty with skin rashes, like eczema, widespread on several parts of my body. I've had sensitive skin, but not experienced this before Ty. It gets worse with certain foods. It's the weirdest thing, like the immune suppression brought out a food sensitivity or something? I know the side-effects include yeast infections - I took that for the more familiar kind you think of when you hear that, not a more generalized GI-skin thing, but I'm wondering. Is it just me? :o

Hi Bstnlives and welcome to our Tysabri thread! Glad you found us and sorry you have to be here!

Boy, I never heard of that reaction before. It certainly doesn't sound like fun!

I wonder if it isn't something that you had lurking that is getting treated while Tysabri is treating your MS...What I mean is I used to have small patches of what my doc said was eczema or psoriasis that never bothered me before Tysabri. After my first few infusions, I noticed that the tiny patches seemed to be more pronounced, more raised, but not severely and not itchy. It was sort of a "hmmm" thing more than anything for me. After a few infusions, I noticed that they were gone and they never came back.

The other thing I am wondering is if you might be gluten intolerant/sensitive. I don't know much about that but there are lots of folks out on the general MS board that have loads of info that may lead you in the right direction.

Hope you find some answers! Come back and let us know how it goes!

Thanks, Riverwild! Your thoughts are mine exactly :) I did happen recently to have a celiac test, which was negative, but I don't think that's the end of it. I do think there is something to the insensitivity/intolerance thing. So, I'm investigating that. (One interesting note, if the food is freshly made, like homemade pizza, it doesn't seem to be as bad as processed/packaged/restaurant food, even if it says its gluten free.)

The RN at my neuro agreed with me when I said basically what you said, which is that perhaps I had something hanging around which I'm seeing due to the immune suppression.

It gives me hope to hear that your issues went away after a few infusions. That, and my own dietary efforts, and I should feel better in awhile.

You rock, btw :) Thank you SO much for posting and continuing to post your experiences. I'm happy to hear that you are having so much success with Ty!

Hey Ty I'm back
 

Thought i'd leave Ty for Copaxone then Novantrone but I learned the last 2 were only successful on the people at MS group when taken together. The heck with that. How I forgot what nightly injections 365/yr was like is beyond me. Told neuro today let's go back on Ty & hopefully some new ones come out end of year. I pass on Gilenya. My liver takes enough abuse with all the meds/supps I take. I actually miss the chemo room. Tuesday I get to say hi again!

Hi Eddie! Just curious (new here), why did you leave Ty? I'm passing on Gilenya too, for the same reason.

My neuro said this was a good time to start Ty b/c within about 2 yrs (the magic PML watch time) there will be lots of good developments :)

Good luck on Tues!

Hi and welcome. Because i'm still losing sensory pretty much everywhere I have left to lose. Motor function is hanging in there with all the exercises I do so i'm back. I'm a very easy stick as well from all the workouts & eating right. I eat alot, but exercise sure speeds up metabolism :)
ed

I'm on the saline flush for #26 right now. So far, not a lot of side effects for this infusion. Yahoo! I have a meeting with the neuro at the end of March to discuss staying on Ty or going on Gilenya. I am thinking then I will get the stratify JC virus antibody test (even though my neuro does not think it is worth it because of false negative possibilities--he is waiting for Biogen to sort a few things out with the test and getting it on the official market). If I am negative I will stay on Tysabri -- please let that be the case because I love this drug! Otherwise I've reached the point where I don't think I can handle the PML risk anymore. My life/job are going great right now and I really don't want to end up in a nursing home bedridden for the rest of my life, or even dead for that matter. So I may join the MS pill popping club. Anyhow, hope all are doing well.

hi. I'm overdue for infusion 7 or 8 now. going through a break-up and single-parenting a 1 year old so things are really complicated. i'll try to do it week after next, so that's just a 1 or 2 week delay.

but i got the positive test result for JC virus. I know people who died of PML, because i've been an AIDS activist for 20 years and remember what it was like.

i'm really scared and sad. I don't want to be on this drug. I had 2 mild flares (sensory symptoms that totally resolveD) then a big scary one that started 2 months post-partum. I was diagnosed 3years ago but think i maybe had mild stuff going on going back 15 years before that.

So I appreciate what Tysabri has done, as far as putting the flare in check after 2 rounds of steroids and 1 round of IVIG didn't.

But the literature says that post-partum flares don't predict future progression or risk of future flares. So do I need to stay on Ty?

But now I've got likely-permanent neuropathy in feet and legs, and other more transient/less noticeable symptoms as a scary reminder that flares are real.

And I'm also scared of the immune reconstitution syndrome that could happen if I go off Ty.

I couldn't tolerate copaxone, the supposedly mild one - went down to every other day and still was too sick from it.

I'm thinking I'll stay on Ty to get through the hot summer, and then consider going off, and maybe on something else to see me through the risk of the immune reconstitution, and then decide whether to stay on or off treatment.

please share your thoughts with me. I'm sad.

Hello Roadaction13 and welcome to our Tysabri thread! Sorry you have to be here but still glad you came!:)

Boy you have a lot on your plate and in your post. I'm going to piece through it and try to answer what I can.

First off- a positive JCV test does not mean you will get PML. We don't know yet what the test results will mean. The reason I say this is we don't know what triggers PML. We don't know how people get the JC virus and we don't know whether it is all variations of JCV or a specific subset of JCV DNA that has mutated that starts PML. We just don't know. Those of us who test negative could test positive in 6 months and not know how we picked up the JC virus. There's a lot of unanswered questions.

Knowing what you know and seeing what you have seen with AIDS patients has got to be hard to deal with, especially when you are on a drug that could trigger the same scenario when it comes to PML, but not all people who test positive for the JC virus get PML, otherwise 50-55% of us would have PML, wouldn't we? Again, it means we don't know all the variables.

As far as IRIS goes, it seems that it's people who undergo plasmapheresis who develop IRIS. I'm not saying that discontinuing Tysabri won't cause IRIS but the data says it's after reconstitution of the immune system after plasmapheresis is when it is seen most often. Many, many people have discontinued Tysabri and gone on other meds with no problems. I've searched and can't find anyone who developed IRIS after quitting Tysabri, but there may be some out there we just haven't heard of. I do know most people go onto something else after clearing Tysabri from their system on the advice of their doctor.

As far as going off Tysabri, that is a decision you and your doctor have to make together. There are folks here who have gone off Tysabri and started other meds, and I hope one of them will pop in and give you some information as to how they are doing now.

I don't know if any of that helps you, but if you want to talk, someone's always home!:hug:

Thanks so much for the words of support and information.

I know that the PML is very rare, and that the antibody test just means that at some point I was exposed. But it's still super scary to me.

I didn't know that the IR was all or mostly all people who had plasmapherisis. I think I was conflating it with the possibility of a flare happening in the first 6 months of going off drug. So it's good for me to remember not to mix them up...

ok now i have to call to reschedule the infusion...

JD

2nd infusion down. exhausted the last couple days since, and itching all over later that day. otherwise good.

i asked them for complete cbc and they said yes but actually didnt do it. they dont listen to me :mad:

In the US, government legislation determines a "rare disease" is one that occurs in 1/1500 patients. PML's numbers, which started off at 1 /1000 for Tysabri users, is now about 1/500 for users that have been on the drug for more than 2 years.

Testing positive for the JC virus doesn't mean you will get it. Testing negative for the virus doesn't mean you won't get it.

Just makes deciding what medication to use all the more difficult.

Harry

My doctor was talking about the option of doing a spinal tap in the end of the summer (which is when I told her I was thinking of going off tysabri, as I don't want to risk another hard summer like it was last year at peak of the bad post-partum flare...) So that would be to look for different kind of evidence about if JC virus is there or not? Anyone have more details/experience with this?

Rescheduled infusion for next tuesday.

Have you spoken with your doctor about this, Clark? Are you taking anything, like benadryl or claritin or any antihistamine? Some folks premedicate before infusion with benadryl or one of the antihistamines.

Another thing you can try is having the infusion nurse rotate the bag gently during infusion to ensure that it remains mixed. That is what worked for me when I had what I called "pinpoint itching" during infusion. It was almost like having a flea biting me or something. As long as I didn't scratch it didn't get bad but scratching activates the histamines and makes it worse. Benadryl didn't work for me so I did an item by item look to see what might have been causing it, and found that the drug was separating during infusion (20 minutes or so into infusion) and we rotate the bag now and that stopped it.

Talk to your doctor! They may be able to help.

I had one LP when I was diagnosed. It took 5 tries to get the sample. I never want to do that again...so I don't have any experience with LPs other than that. I'd be asking my doc a lot of questions if he said he wanted another LP! :eek:

Hope the next infusion goes well. Let us know how it goes.:)

yeah LPs are awful. I've had two so far, the second was right after I was diagnosed... not eager to do it but if it could rule out or tell me I'm not at elevated PML risk, I think I'll go for it.

JD

While cleaning out files I found an excellent synopsis of JCV and PML risk.
I do not know where I got it. I am sorry I cannot give credit to anyone for it, but whoever it was, if they see this-THANK YOU!

PML (best guess and best evidence) is a multi step process....
First, you must get the 'standard' virus which hangs out in the kidneys and lymph tissue. During this short time, you will be JCV DNA positive. From this point on, you will also be JCV ANTIBODY (IgG) positive (after 3 to 4 weeks).

After primary infection, it goes dormant but may flare up periodically. When flares up you could be DNA positive.
Also, when it flares up, it may mutate.
When mutated, the infection usually is quickly controlled.
However, some mutated versions can go to the brain.

If in a brain with a 'normal' immune system, PML will not develop as the virus is quickly neutralized by resident immune cells.

With Tysabri (or Rituxan or some other drugs), there is less ability to control the mutated virus in the brain and PML may develop.

So, a person who was exposed to JCV will be JCV positive for the rest of their life but be JCV DNA positive only short rare intervals.....and when DNA positive, it does not mean the mutated form which may cause PML.

The STRATIFY study is for the JCV Antibody.
If JCV Ab positive, your risk of PML after 18-24 months is about 1:400.
If JCV Ab negative, then your chance is very small (probably 1:10,000 range).

The reason risk is not zero is because no laboratory test is perfect and because if you are negative, you have a small chance of getting the standard (non-mutated) virus infection in any given year and will then be JCV Ab positive,

If you get the standard virus, all other steps must happen to get PML.

thanks. i have an appt next month to see my neuro doc. sucks that it takes so long as i made the appt in january...


also i noticed my headache in the right front area of my head came back yesterday and my balance was all out of whack. i almost fell several times... :(

I know you asked about this a while ago, but I just arrived at the boards and thought this might help: You may be able to get financial assistance for the infusion costs via the hospital or infusion center. My insurance didn't cover my Tysabri OR infusion (even after multiple horrible appeals) but the hospital approved full coverage for me after submitting a simple request form. Maybe that will work for you as well!

I hope all went well in your first infusion!!!!

Thanks....I did just that, sent a simple letter via fax, and my neurologist agreed to wave my co-pay portion of the infusion. I guess sometimes we just have to ask.

My first infusion took 4 sticks, and I ended up having the entire infusion through a small butterfly needle. I did get a head pain on the left front area of my head, I had a quick heart palpatation, and felt nausea....BUT all in all it was better than I thought. About 3-4 after the infusion, I had a very runny nose and congestion. Not sure if it had anything to do with the Tysabri or just a cold. Also, I am noticing small brusies on my arm and leg. Anyone know if this could be from the TY??

A beautiful sunny day here spent in a windowless horseshoe shaped infusion center that somehow always reminds me of herding cattle. Infusion was all day and draining. Nurse pokey and I got into when she yelled at me for taking my iv out. Mind you the drip was done my arm hurt from the iv and the lovely rash I get from the glue was itching. So I took it out. Just like every other time I have had an infusion and it was painful. If it is in a spot that doesn't hurt I will leave it in.

But its done and over til next month. Doc appt allready sched for next week to treat the monthly sinus infection and uti from todays infusion and life goes on.

Congrats on your quick thinking AND the co-pay win!
FYI: The infusions definitely get easier. I thought it was just me, but the more time I spend in chat rooms and on boards the more I see we seem to share this experience. I used to get tired and achy afterwards, but this diminished rapidly. I'm on month 8 now, and I'm hardly phased at all (though I do pamper myself for the 36 hours following!)
I have never seen anyone mention small bruises following infusion (except at IV site) but perhaps someone else can answer to that.

All my best!

DARN!!!!!!!!!!!!!!!!!!!!!!! I was really hoping you would be negative. But, you're right, Grammie, the plus side of the infusions makes it all worth while. You're such a inspiration to all of us. :grouphug:

love and hugs,
Shayna

Clarkstar, I premedicate with benadryl 30 minutes prior to an infusion. It helps me a lot!!!!!!!!!!!!!!!!! Itching is a problem for me all of the time. I would never make it through an infusion without my benadryl :( My side effects include fatigue, headache, pain in my arms and legs.....sometimes I feel slightly feverish. The side effects for me last anywhere from a couple of day to a week. But, usually they are only there for a few days :)

My infusion center doesn't like to do blood work either :( I have to beg to have my blood drawn. If they don't do it every 3-4 infusions I go to my dr and have them do a blood test for me.

good luck!!!!!!!!!!!!!!!!!
Shayna

I'm finally home again after spending time in California with my grandchildren. I love the time I spend with them and hate the computer withdrawl I always have in California....LOL I may have over done it a bit this time. I arrived home 5 days ago with another sinus and double ear infection, completely exhausted, having difficulty walking and talking.....these are "normal" for me when I over do it :(

I canceled my infusion....don't remember which # it is.....for last Friday and have rescheduled for this coming Friday. An infusion and the side effects were just too much for me to handle :( I'm feeling much better today. The antibiotics have finally kicked in and I can walk and talk again because now that the infections are under control my m.s. isn't worse and I'm well rested. One day I'll learn to pace myself better.....yeah, right...LOL It's just that I only see my grandchildren every 6-8 weeks now. So, when I'm with them I try to spend as much quality time as I can and make it last as long as I can. I know I shouldn't have stayed so long but I needed my "extra special huggies" more than I needed anything else :)

I hate leaving California but, there is no way we could move there right now. The older grandchildren...ages 17, 19 and 22...don't really need me all of the time but the 2 little ones...ages 4 1/2 and just turned 6....need a grandma!!!!!!!! I wish their other grandmother was involved in their lives.

I can't believe I don't remember how many infusions I've had!!!!!!!!! It will come back to me later :)

It's raining here in the desert. I think I'll have some more tea :)

huge hugs to all,
Shayna

#53 Friday
 

Fri I had my 53rd infusion-this time I didn't even have the bit of headache I had had the couple before.
Still very thankful for Tysabri :D
Linda

infusion 8 was friday
 

I got the infusion with the usual bit of fatigue that day and next day but no other troubles...

I also got a bill from the hospital for $10,608 a few days before that, so something seems to have gotten confused between my insurance company so I've left a bunch of messages and will have to follow up on that!

I'm at an HIV medical conference and am going to talk to some neurologists here who have been dealing with PML through the years, to see if they can help informally speculate on things to consider for those of use doing tysabri while antibody-positive for JC virus...

best to you all,

JD

Flare??
 

It is three weeks today since I had my first infusion. But, now for the past 4-5 days, I have had very red irritated, watering eyes, burning/tingling/aching down my right arm, burning mouth, extreme fatigue, vibrating sensation in my left buttocks and down my thigh, as well as a severe migraine for 4 days straight, and this feeling of an internal tremor (I have never had this before) it is from my brainstem area to my stomach....like I am shaking inside.

Do you think this is a Flare? or a reaction to the Tysabri? about one week after the infusion, I had a irritated, runny, congested nose...and off and on abdominal cramps (that lasted about a 5-6 days)

Well, me, for now (I just did infusion #8) and I know / have read about others. I have a friend who is at about 2 1/2 years who is antibody positive and is still on drug.

The test shows that, at some point, a person was exposed to JC. It's still unclear, as far as I understand it, how much it increases risk.

JD

scared and worried
 

My husband is divorcing me. I have been on his federal health insurance as my secondary. It has paid what medicare doesn't pay for my Tysabri and covered all my other meds for a small co-pay.

Now, I guess, I will need to go to medicare part D-which I know nothing about all the different choices as I didn't need to have that knowledge.

The divorce is so horrible in itself and now I have other worries I didn't have 6 days ago. The fear and uncertainty of my Tysabri and other meds is overwhelming .

Thanks for "listening"... and any help is appreciated.
Linda

I would say that the best person to talk to for this is your MD. I didn't have any of that stuff when I first started, just a nagging sore throat for the first few infusions. Have these symptoms eased since you posted?

Wow Linda, I am so sorry to hear this.
It sounds as if it was "out of the blue"!
Is there any way you can be kept on his insurance? Would the COBRA option work for you? I haven't had to deal with losing insurance, since I carry my own insurance and am not on anyone's policy, but there has to be something out there for you. Please talk to your MD and the Tysabri program and see what they can do for you. There's also a lot of other programs out there that may be able to help. I'd also get a damned good lawyer.
I wish I had more for you. All I have is hugs and an ear if you want to talk...:hug::hug:Linda:hug::hug:

Thank you RW...
His filing in AZ has made this difficult for me because I live in CO; am only a winter visitor here. He has declared residency here; you only have to reside here 90 days.

I have medicare so need to find the best supplemental to cover what medicare doesn't for Ty and other medical needs. As for part D it scares me but I need to figure it out.

My son found an attorney on line-I think he was led by a higher power because in talking to the office gal I found comfort and knowledge ( my son felt the same). I have an appt today. I am moving forward, don't want to but doing what I must.

I so appreciate the hugs!!
Linda

RW,
My migraine is gone....thank God! But the other symptoms continue. I am having my second infusion on Wednesday, but am afraid if I am truthful about new symptoms they won't give me the TY.
I saw my neuro last week, and told them about everything, and they told me it was common to have an increase in symptoms a week or so before your next infusion is due. So, I am not sure how to answer those questions??

Linda, there is a patient at the infusion center that I go to who does not pay for her infusions. Biogen pays for them because she does not have the money or the insurance to cover the cost. I would check with Biogen and see if they would be willing to help you. You've had so many infusions that I don't think they would want to lose you!!!!!!!!!!!!!!!!!!! You're the "poster girl" for Tysabri :) You've decided to stay with Ty even though you tested positive in the assay.

I'm so sorry to hear of the divorce. It sounds like it came out of nowhere and was a shock to you.

lots of hugs and prayers going your way,
Shayna

Daisy, this may reach you too late...I'm sorry I've been battling a double ear infection for so long I can't remember what it's like to not have my ears hurt.

If you tell them at the infusion center that your neuro knows about the symptoms and has consented to having you continue on Ty they will give you the meds. I know because my infusion center panics every time I tell them I have another infection and I'm taking antibiotics but, I have told them that my neuro wants me to have the infusion so they give it to me. I had infusion #42 last Friday...on antibiotics :)

hugs,
Shayna

I just had my second infusion today, and both times, I get this dizzy, off balance feeling, hard to hold your head up feeling; and a feeling of shaking on the inside, like some kind of internal tremor.

Has anyone had anything at all like this??

I called my neuro, and was told that it sounded like anxiety as a side effect of the Tysabri. I have never had anxiety before. They called in Klonopin. I hope it helps.....but at this point I don't know if I should continue with the Tysabri??

I have learned that with a medigap supplemental insurance I can get the same coverage that I have now-just will need to choose which one and pay the premium. I now understand part D of Medicare better and the same will apply as with the supplemental insurance.

I am planning on going to the Rocky Mountain ms Center in Denver, CO for a neurologist when I can get home to CO.

Linda