I had my 17th infusion today. (Don't say a word RW.) :lookaround:

It went well, no reactions. The MS neuro spoke to me about the PML cases when he checked in on me.

He said he doesn't think the risk is any more now than it was before. He said it was my choice for whatever I would do, no pressure from him to stop. If I wanted to stop it, he'd support that too.

He thinks it might be a good idea to have MRI's every six months now but that would be the only change. They already have a good program there with the doctor checking me each month.

A bit late this mo, but I want to check in and tell you #6 infusion was done on the 12th. I did not premed this time. No reaction at all. Same as usual - no problems.

:p :D ;) :hug:......

Still waiting
 

I had hoped to have my first infusion this Thursday but, so far, the insurance company has not gotten back with the neuros office. My dr is frustrated, but the coordinator in the office is completely blowing me off. No return calls as to the status (even though the dr called me himself, assuring me that she would call...)

Since I am off all meds, I would like to get this started! I know, patience! Thanks for letting me share!

~Teresa

1st infusion
 

Well, my insurance company did come through with the authorization and I received my first infusion on Thursday. It went off without a hitch, the only unexpected issue was from the nurse who administered the meds. My neuro told me to premedicate with Tylenol and Benedryl - the nurse told me to NEVER do that. I am not to premedicate. Not sure what I think about that. I had no reactions - although today I am very tired and feel sick to my stomach... but I am pleased with the first infusion.

Thanks for all your support!

~Teresa

This is a girl question so you may want to skip if you're a boy!
 

For those women on Tysabri, have you experienced any irregularities with menstruation? -- delayed, length of time of menses MUCH longer, spotting, or anything else? Does anyone know anything about this?

Feel free to PM me. Thanks. :)

Don't worry - you are fine. This is common with MS. I have it too. Sometimes more, sometimes much less (1 day 2 mos ago) . I've not had spoting yet but I assume it may come. I am told this is due to MS not TY. I think I agree, as it started just after my 1st relapse (b4 ty). I'm not a Dr, but based on me in the last 8 or so mos since DX, yes all has changed. I don't worry about this one. It is prob the only MS related prob I do not worry about. Hope this helps a little

Teresa
 

a premed with Tylenol and Benedryl cannot hurt! Many Dr tell you too, many do not mention it. Mine never did, but I did tell them I premed Tylenol and Benedryl. They did not care, but I was the only one who premed. I was just scared as I am sure you were. I premed my 1st 5 infusions. I did not on my 6th and all still went fine. I think my body needed to adjust to TY. I would do the same again. I wanted to play it safe and I think I needed to. This is just MHO.

If u decide to premed again, I would not tell them. I think it is your choice. Many may disagree with me, but there is little I now have control over and I will or will not premed as I alone deam necessary.

Reaction question
 

I had my first Tysabri infusion last Thursday and everything went fine - nothing unusual. Then on the weekend, I had extreme weakness in my legs, more than normal numbness in my feet. Instead of using one forearm crutch, I have gone to the wheelchair.

Question - has this happened to anyone else and what was the outcome? I am not discouraged...just a bit frustrated and curious. Thanks for any input!

~Teresa

Hi Teresa,

I felt pretty rundown the first few months, much more tired than usual. I hope this is just temporary for you. :hug:

Hi Teresa,

Sorry to hear you are you are not doing well in the last few days. However, I don't see this a ty reaction. My guess is it would have happened anyway. There are many things that could have caused this. You have been under a lot of stress just getting on ty, you could have an infection, you may just be having a few bad days or worse case you many be looking at the onset of a relapse.......... I'm not a Dr, but if I were you I would advise mine.

I think when many of us start ty we are nervous and scared. There is so much neg hype about this drug, how could we not be scared?? As such, we tend to look at all things as ty reactions. When often they are not. I can tell you in the last 6 mos on ty, I have had every ty reaction one could ever dream of. Everything that happened to me was a ty reaction. I have a Migraine from H*ll right now and 6-5-4 mos ago this would have been a ty reaction. I am not saying this is you or that you are like me - I just want you to stay calm and not look at everything as a ty reaction.

Guess what I NEVER HAD ANY TY REACTIONS except an expected drop in my immune system and much illness due to drop. I am COPD so this drug is hard on me, but the rest would be worse. I would be sick with needles, flu like sx, and my illness too.

BTW - You can look back at my posts. I drove everyone on this board nuts with every sx in the book. I have no idea how or why they stayed with me. But, they did. For that and so very much more - I thank them with all my heart.

Hang in there - we have some real ty experts on this board. They will show when they deam you really need them. That is one thing I know for a fact.

New trial for Tysabri to treat Multiple Myeloma
 

http://www.pharmatimes.com/WorldNews....aspx?id=14280

First dose for Phase I/II trial yesterday for Tysabri treatment for Multiple Myeloma.

Definition of Multiple Myeloma: http://www.multiplemyeloma.org/about_myeloma/

While this is NOT about MS, it does involve Tysabri and may mean another label change in the future, depending on the outcome of the trials.

Regardless of why it is being used, I hope Tysabri helps!

While I don't remember having the tiredness and weakness that others have reported, there HAVE been a lot of reports about people having the symptoms you report.

I work nights and go for my infusion after a full week of work, usually on 4 hours sleep or less the day of infusion, so I am NOT a good patient to compare to. :rolleyes: I'm ALWAYS tired!

Most people reported improvement around infusion # 3 or 4. I am not sure whether the whole stress and uncertainty of the decision to go on Tysabri is in play with some of this but as we all know, deciding to change or start a new therapy always has stress involved in it, whether we recognize it or not.

I hope this resolves for you. Please keep talking and let us know how you are doing!:)

clinic crowding
 

I had my third infusion today. What a nightmare. There are 4 infusion chairs in the MS clinic. All were taken when I got there, and most of the infusees (what to call them??) had just started. And I was on time!! I had to sit on this tiny old couch across from the chairs (no stretching out, no space to put my stuff, no back support) for the first 45 mins of my infusion, after waiting 30 mins. to begin with on the ratty couch. A relative of a patient was sitting next to me (it could only fit 2, and barely) and her stinky perfume was kicking up my allergies. I was so cranky!!! :mad: They claim they didn't overbook but that the clinic has too many infusion people now, only 1 nurse, some people come late, and they really need to expand space. I made a fuss at first, so 30 mins. into my infusion they kicked a guy out of the chair to wait out his last 45 mins on the couch. I felt bad but on the other hand I was stressed out about being there and wanted my cozy chair where I could lean back, close my eyes and pretend I wasn't surrounded by people with walkers and wheelchairs and hide under my blanket. I did start to tear up a little.

Anyhow, I'm feeling crummy after this infusion. Nausea, headache, muscle aches, and drowsy of course. Kind of like mild interferon flu. The first and second ones were a piece of cake. Is it normal to have some side effects on a 3rd infusion if you were fine for the first 2? I guess the Ty. is building up in my body?? maybe producing some side effects now? I did read it takes 6 months for the body to build up a steady state of the drug.

Help, I'm having a panic moment! :( You know, like I'll have flu symptoms from Ty from now on or I'll develop antibodies and have to go off and there are no other drugs for me that my body can take and the MS will get worse and I'll have to quit my job and I'll get more depressed etc. etc........ can you say catastrophizing? :( I'm worried as I have to teach two college classes tomorrow. What if I have to cancel the early one if I don't feel better tomorrow? Mondays are the only day I can go for infusions. I'm feeling guilty if I have to cancel. Ugh. Just one of those days.

So Sorry Nat....:hug::hug:

Natalie,

I'm so sorry you had to deal with that. :( :hug: I feel so lucky, I'm usually the only one getting my infusion. Just once there was another girl in the room with me.

I hope your side effects are just from the atmosphere of the infusion and that they'll pass soon. I had extreme tiredness the first several infusions, without any worsening at the 3rd one.

We're all different though, so maybe you'll just feel better in a day or two. :hug:

Tysabri - Melanoma warning:

On 05 September 2008, FDA issued a list of 20 drugs that may have serious risk or side effects. Tysabri is one of them.

Details can be found at the FDA website.

http://www.fda.gov/cder/aers/potenti...als_2008Q1.htm

We are heartbroken to see Tysabri on that list - it is the most effective drug that my wife has taken in holding relapses at bay.

Natalie,

If you feel like garbage tomorrow, then call in sick. Your students will be fine.

Tell your neurologist about how you feel. It is important for the neuro to have a complete picture of how you are doing.

By the way, if the infusion center does that again, tell them that you are going to another center where you will be treated better. That will get their attention.

-Vic

I wish they would have waited to start this trial on myeloma cancer patients until after the FDA completes it's investigation on whether this drug is CAUSING melonoma cancer . . . .


WASHINGTON — The Food and Drug Administration will begin posting every three months a list of drugs whose safety is under investigation because of complaints brought to the agency's attention by drug companies, physicians and patients....

Drugs under investigation by the Food and Drug Administration, what they are used for and the potential problem:

R-Gene 10: a growth hormone; pediatric overdose due to labeling/packaging confusion
Suprane: an anesthetic; cardiac arrest
Cymbalta: For depression and other conditions; urinary retention
Intelence: an HIV medication; bleeding into joints
Carac and Kuric: creams for skin conditions and fungal infections; name confusion
Heparin: a blood-thinner; serious allergic reactions
Extraneal: used in kidney dialysis; low blood sugars
Humulin R (U-500): insulin for diabetes; dosing confusion
Stromectol and Warfarin: an anti-parasite drug and a blood thinner; drug interaction
Tykerb: for advanced breast cancer; liver damage
Revlimid: for multiple myeloma; severe skin blistering and bleeding
Tysabri: for multiple sclerosis; skin melanomas
Nitrostat: for angina; overdose due to labeling confusion
Sandostatin LAR: for abnormal bone growth; bowel obstruction
OxyContin: a painkiller; drug misuse, abuse and overdose
Definity: used in cardiac imaging; cardiopulmonary reactions
Dilantin injection: for epileptic seizures; serious skin reaction
Seroquel: for bipolar disorder; overdose due to sample-pack labeling confusion
Tyzeka: for chronic hepatitis B; nerve damage
Tumor-necrosis-factor (TNF) blockers: for juvenile arthritis; cancers in children and young adults

Source: The Associated Press

http://seattletimes.nwsource.com/htm...fdalist06.html

Cherie

While the FDA HAS come out with a list, it's due to their attempting to clarify ( and not very well IMHO ) the AERS database entries.

The melanoma warning is a result of two letters written by two doctors in the same practice, to the American Journal of Neurology(?) about two patients who supposedly had prior melanomas kick into high gear after Tysabri infusion. They BOTH had melanomas prior to starting Tysabri, one on a shoulder and one with a family history of a rare eye melanoma.

No proof is available that it was caused in any way by Tysabri. Many people report that moles and freckles have shrunk or disappeared after Tysabri. I have stats on melanoma in the US and it's entirely possible that Tysabri may actually help PREVENT melanomas!

With over 30 K patients now on Tysabri, if there is a connection, there will be more cases. As usual, the warning is BE VIGILANT to any changes in your health.

I have a few bumps that I am getting checked out next week. They have been on my leg for YEARS. It's entirely possible that they are skin cancers. As a whitewater guide I was exposed to the sun daily for MANY years. I used sunscreen religiously, but just because you do what is recommended, doesn't mean you are not at risk. If they do turn out to be anything, I am NOT going to blame Tysabri, I'm going to blame sun exposure and lifestyle and the fact that I let them go for years without making any fuss about them!

I go for #18 on Thursday. That's 18 months and counting without a relapse! I do believe that I have an MRI coming soon too. I cannot wait to see the results from that! After my last MRI, with it's astounding results, I expect more of the same.

Don't let news reports scare you away from effective treatment. Partner with your doc and make sure you are vigilant when it comes to your own healthcare.

The trial is for MULTIPLE MYELOMA, not MELANOMA.

Two different types of cancer...

Oops, I knew that. :o I dropped the wrong "m" word . . . I'll fix my prior posting so there is no additional confusion.

I believe the cancer they are testing it a type of cancer that could affect the blood, bone marrow, and lymph nodes. I don't think it has a particularly great survival rate :confused:, so I suppose anything might be worth a shot, depending on the patient's particular "stage".

Are you SURE these are the only cases of melonoma reported so far? According to that link I attached, the FDA hasn't released how many cases, etc. have caused the investigation(s). :confused:

"The FDA will name the drug and the nature of the "adverse events" but will not describe their seriousness or the number of complaints received, officials said Friday. Being on the list doesn't mean the drug is unsafe, only that FDA is looking into that possibility."

Cherie

two day tysabri funk
 

Just an update: By this morning (Thurs.) I was feeling great -- almost back to normal after having the infusion on Mon. followed by some flu-like symptoms. If I just have to feel crummy 2 days out of the whole month I will take it! One thing I noticed today is that the heat wasn't bothering me as much as normal. It was 95 here and very humid. I was hauling books and bags in the sun all around campus at noon and no fatigue, no shaky balance, and no tremors! Wow. Maybe it's the Ty. kicking in?
PS: Thanks Vic for the support. I canceled classes, took care of myself and rested, and did not feel guilty about it. ;)

Infusion # 18 down.

No problems, no concerns, except for that pinpoint itching!!

This month I went in with long sleeves and farmer jeans and socks, all skin covered so as not to expose any skin to the furniture cleaning stuff. About 3/4s of the way through the infusion the pinpoint itches start. One here, one there, one way over there, one "there" :eek: It seems to me only mucosal areas or areas that perspire, or maybe it's the lymph node areas?

I didn't scratch. I started looking at the infusion bag and noticed that the Ty/saline mixture in the small bag seemed to be separating as it got closer to the end of the bag. Maybe it's concentrating as it settles?

I rode it out and as soon as they started the hour long flush of NaCL it stopped.

Next month I am going to try giving the bag a couple flips during infusion and see if that makes a difference.:p

At least I don't get bored while I am there! :D

I AM going to figure this out!

Hi Vic,

Once I had a UTI but no symptoms other than I could hardly walk. By the time I had some symptoms, they tested me and told me it was a "raging" UTI. I don't envy you having to deal with those, but at least you have a good way to manage them. I hope you'll be feeling better soon!

If this UTI fits my typical pattern, all will be well with my gait within a week.:)

This is just another one of those MS adventures we all have to deal with at one time or another.

At this very moment, while I type this and watch the streaming CNN newscast...I have made a CRITICAL decision.......I am going to get a double scoop of Rocky Road!:D

-Vic

Yes Vic, last month I did the benadryl and tylenol per doctor's orders. I still had the pinpoint itching.

It wouldn't even bother me if it wasn't in places that I CANNOT scratch in public! :p I've had it since I started, never enough to really bother me since it always goes away and there is no rash, swelling, S.O.B, or any other signs of problems.

I am one of those disgusting people who literally almost never gets sick or has any reaction to anything.

I am allergic to no-see-ums and that's it. I used to take benadryl when I was in the woods overnight and ran a chance of being bitten, and I always kept an epi kit in my major med kit, but never had to use it. With those bites, I used to swell and could feel the heat running from the bite to my head, my lips and eyelids would swell and I would look like I was of Asian descent, but it didn't ever get any worse. I never had an anaphylactic reaction to even those bites.

This is not even like that. It's almost like being bitten by a flea in different places, one bite for each place and if I don't scratch, the itch goes away. It just bugs me enough to occupy my mind while I am wriggling around, trying not to scratch. :D

RW,

Could it just be a case of the fidgets that brings on the little itchies? I get those so bad when I'm trying to keep my arm steady for the IV. It's sort of like having to scratch your nose when you're in the MRI machine. ;)

LOL Wiz!

I'll investigate that after I try shaking the infusion bag a few times. :D

I'd be concerned if there was a bump or something when it itches, but there's nothing there. I get it even if I am fully occupied doing something else. I don't think it's the fidgets, but who knows! :rolleyes:

Just an update: I had my 7th infusion on 9-9-08. Again, I did not pre-med. No sides - nothing. I was tired, but I was tired driving in. I just did not sleep the night before. I remain loving Ty but always looking for better.

What happened with HiCy?????

I get that too, RW (and I am not on Tysabri). It can make you crazy, eh? :eek:

Apparently it is a "misfired pain signal", but I have found that Benadryl does usually work very well for me. So far, no other antihistimine I've tried has done the trick though.

The other option, if it's only in a few places, is to put one of those little dollar store ice packs on it. I think it confuses our brain or something, cause applying it for just a minute or two will take the itching away, sometimes for many, many hours.

Cherie

I've had that happen too, Ewizabeth . . . hardly any UTI symptoms what-so-ever ~ just the MS ones.

In the past few years, I've learned to check first for infections when symptoms flare up (even teeth, or other obscure bacterial infections that people/doctors don't consider relevant).

Glad you recognized what's going on, and hope antibiotics can take care of this infection quickly, Vic.

Cherie

Sally,

HiCy is still a ago. That is what I meant by looking for better. I'm acepted for HiCy, but am on a long waiting list. I have no idea when I will even get in to see the Drs yet. I will stop ty 30 days prior to HiCy. I do believe Ty works, but I am looking for a cure or as close as I can get to one. HiCy seems to be as close as I can get.