Thank You for thinking of me! Funny ..I thought about you that afternoon also. Wow......It's almost like taking someone with you!? You will be in my thoughts on the 19th also.
I am feeling Good. A month off Rebif has been WONDERFUL!
With physical therapy and the TY I am really feeling positive.
You will never know, what an influence your posts were to me!
I'll keep in touch.......Barb

More hope for those on TY
 

Before going on Ty I was told I would never regain use of top of my left leg like before and would always have same prob there. Guess what - leg is almost back. I would say 95%! This is not something TY is supposed to do. But, it has happened to others and now even me w/all my prob. I think this sayes a lot for TY.

Yes, I am in an exacerbation - but I never came out of the 1st. Ty is not supposed to pull one out. TY is not supposed to do anything much for 1st 6 mos. But, it has on me. I can even touch my leg and have it fell almost like the other. All I have is very minor dif. This exacerbation is bad, but it is not as bad as it 1st came on. I can walk... and I could not w/1st. I do not think TY put me in this relapse. I was going into it before my 3rd infusion.

In ref to staying on TY and past sides.

I stayed on Ben for 1st 24 or less hrs this mo and had no sides. I even think I have found a reason for sides - the swelling... I had. I'm allergic to cheese. I usually don't have anything but swelling an itching of feet and hands and that is only when I eat tons. I think TY may have increased my allergic reaction. Hence, I ate no cheese last mo - took ben for only short time just in case and had NO SIDES.

My advise to those consideing TY

Just stay 100% away from anything you have ever had the most minor reaction to. Most do this anyway. I just love cheese. Based only on me so far -- if you do -- I think you will be fine. I never even considered this till it just occured to me one day.

I'm had antibody test - will get results this week. I'll have liver later this mo or maybe when I go to GP b/c I'm sick. I have feeling all will be fine. I am usually right with my feelings - so we will see.

I remain very pro TY!

Sorry for typos... I'm sick (fever and such) and not cking.

A Graphical Update on Progress: 14 Infusions of Tysabri.

1) Walking endurance has decreased from the high, but is still better than before Tysabri.

2) Balance has increased, though "wall-walking" has become a crutch, and it may not be necessary (but I don't want to risk the chance of a fall).

3) Fatigue is less of a problem than before Tysabri.

4) Ankle movement has decreased, but is better than before Tysabri.


Notes:
* No UTI's this month
* "Wall Walking" is more common for stability (ugh)
* Tired more often than a few months ago

DISCUSSION: None yet. Eleven more infusions will provide enough data for sound statistical analysis. So, at this point, these graphs cannot be used to show a statistical trend.

CONCLUSIONS: Overall, my level of functionality is a little better than where I was before I stopped Avonex. So this little bit of improvement is a BIG plus. Hence, it appears that Tysabri is fighting to stabilize my MS. Of course I wish it was better, but improvement is not the intent of Tysabri. Stability is the intent.

-Vic

I've had my 4th infusion and haven't noticed any real improvement in my symptoms, which is fine by me (I guess :)).

BUT I truly believe with all of the carp I've been going through lately, Ty is the reason I haven't had another full-blown relapse :D!

Well, it looks like I am joining the Tysabri club. I saw my new neuro today at the MS clinic. I couldn't tolerate interferon or copaxone. So she is putting me on T. The paperwork got started today. I'm not too nervous I guess. Maybe a little? :eek: They have 150 people at their clinic on it. Any starting advice? I assume they will probably tell me everything I need to know.

One other thing -- they said they test your blood for the JC virus that causes PML. And I will have this JC virus blood test done every 3 months. I guess this is a new safety measure going? Has anyone else had this done? The doc. said that 1 in 5 people test positive for JC virus but you can still go on Tysabri if you test positive -- they watch even more carefully.

Hi Natalie,

My doctor never mentioned that, at least not yet. I need to have a liver panel every three months though. Good luck with Tysabri! :)

My update, one year on Tysabri.
 

Yesterday I had my 13th infusion and I've been on Tysabri for a year. Overall, I'm very happy with it, especially comparing it to the other A,C & R that I was on before. I have to admit, I didn't enjoy the shots though I tolerated them.

I had my quarterly liver panel and all levels were normal. :) I feel good today. It's almost like I have a sense of well-being for a few days after the infusion, like I'm very comfortable with myself, if that makes any sense.

My walking is much better compared to a year ago. My bladder issues are gone completely. About 6-8 months ago I'd had some retention issues and I was prepared to self-cath, I even have the stuff to do it. But I haven't had to use it once. :)

I still seem to have overall lower blood pressure and my PCP-cardio doctor had me stop my Norvasc BP pill to see if I go to normal. I'll be so happy if I can get completely off the BP meds! I have something hereditary called primary hypertension so there was no rhyme or reason for it, it just happened. I haven't had a relapse for the past year, or if I did it was extremely mild. My annual MRI looked excellent as well. The neuro said it looks like it has even improved somewhat.

I still have a lot of fatigue, but after seeing the PCP this week and telling him about my low BP readings, he thinks that might be a big part of it because I also get lightheaded and feel faint sometimes.

Today at the office it was hot and humid, about 80 degrees in here with about 95% humidity. I wasn't doing anything but working at my desk, but I was ok with fans only!! Someone else suggested turning on the AC! Usually I turn it on the first hot day and it stays on all summer.

I still get weak from the heat if I exert myself at all, but I guess I can deal with that. :) I noticed today that I mix up my words more the day after the infusion, and I wasn't the only one that noticed. :cool: I suppose it's partly because the infusion makes me extra sleepy?

Yesterday I scared the new infusion nurse I think. :o I must have been one of her first infusion patients at the clinic if not the first. My veins were being shy because I hadn't had lunch yet so she couldn't get the needle to go in correctly. When this happens, I get faint. I must have looked terribly pale. She checked my BP and it was 60/40. She looked so scared, I felt bad for her, but that happens to me if there's an infusion incident. I used to pass out when I donated blood. :o I did my best to console her, the poor girl! Next month if it's a lunchtime infusion I'm going to eat on the way there so maybe it will go easier for her. I know she's really sharp because I could just tell, and she's worked at the ICU in a big Chicago hospital as well. I just hope she doesn't dread seeing me walk in the door from now on. :o

Oh well, I think that's it for me until next time. :)

Yay Wiz!! Congrats on a full year! Isn't it great to be able to say "no relapses"?:hug:

Onward and upward my friend!!

I've never had a blood test for JCV.

You and your doc should know that about 80% of the world population carries the JC virus in their kidneys and bloodstream. It's when it breaches the blood-brain barrier that it becomes a problem and to test for THAT, you need to have an LP and have a good technician who does NOT contaminate the spinal fluid with any blood from the stick.

There are clinical signs that will show up if someone has PML. They can mimic the signs and symptoms of a relapse. Having an MRI and a radiologist who is familiar with the different shape and presentation of the lesions associated with PML is important too. Unless a radiologist has seen PML MRIs they may not be familiar with the presentation of PML. Most of them see it when they do MRIs on AIDS patients with PML.

My neuro told me that if there are ANY sudden changes in my vision, thinking, and usual AFFECT that I should call immediately. That is the sum total of PML protocol at the beginning. What comes after is a whole different ball game. It would be MRI, LP and whatever else comes, including ceasing Tysabri and more than likely a plasma exchange to rid the body of Tysabri. It is my understanding that the PEx would only take place if the person was within a certain amount of time since their infusion.

Today was the two year anniversary of Tysabri's return to market. There are 30,000 people +- on Tysabri worldwide with NO incidences of PML reported since it's return.

Good Luck and please let us know how it goes for you!!

Joelle, if anyone would have had a relapse due to stress, you would have had TEN by now! I don't know how you have held it together these past few months. I hope things have eased a bit for you!!!:hug:

Thanks RW :). My mom raised me to be 'one tough broad' LOL. I'm getting my sense of humor back and that is helping a lot :D.

A short update:

Left leg is much weaker, and "wall-walking" is a common practice now.

Why?
It could be because I am starting another UTI, which make the most sense.

Solution:
Pounds and pounds of Cipro may do the trick! It usually does.:)

I am going to see my neuro-team next Thursday to keep them informed.

I bet by then the UTI will be over, my left leg will be better, and "wall-walking" will have decrease significantly. It usualy does.


-Vic

So sorry about your legs Vic. I haven't had a uti (lucky me :) ). I've heard how nasty they can be. Keep us updated when you see your docs!

No UTIs here either, Vic.

I've never had a UTI, but it sounds VERY unpleasant! I hope your take on things is correct ( as it usually is!) and that things resolve after the Cipro!

Let us know how it goes! We're pulling for you! :)

Sorry about the UTI Vic. I've had them a few times in the past and they sure aren't any fun. The last time I had one was when I was tapering off of high dose steroids with prednisone pills. When I get an infection, walking is very difficult for me as well. I thank God I don't get them more often.

Vic,

I have appreciated reading your posts, so even though I don't know you, I hope you're doing better soon.

I have a question for you long-term Ty users. I never missed one of my interferon shots, and set that as a goal for my Ty use.

My next infusion is July 2, which would put my one after that on July 30. I won't be around that day. It is my extended family's big yearly vacation, and I will be camping starting on the 30th through Aug. 5th.

It is not an option to leave for the trip later. That is not my question.

If you were me, would you postpone the July 2nd shot until July 7th (next time clinic is open) and then just be a couple days long for the next shot (Aug. 6th) or just have the July 2nd shot, and then do the next one 5 weeks later, rather than 4?

Any input would be helpful!!

I don't think that missing the infusion date by a short period will be a problem, but I suspect that your following infusions will be scheduled from that point onward (i.e. every 28 days from the infusion date).

-Vic

So, just putting it off for a week and having 5 weeks between rather than 4 will be okay?

I guess I should probably just ask my neuro what he'd prefer. And chances are good I might not be able to reschedule the Jul 2nd one until the 7th anyway. So I'd just have a five week between infusion 4 and 5. Hopefully that won't make me dead the whole week of vacation!

Bad Veins?
 

I was supposed to have another infusion today, but after several painful pokes, lots of water, and hours of missed work, the nurse told me to go home and she could reschedule me later.

I have left msgs with my neuro and cm.

:confused:

Don't assume it's your veins. I go with the same veins each month, and some nurses just can't put in the IV as well as some others. It's a learned skill! Sorry about all the pokes and no infusion!! :hug::hug::hug:

That is one of the reasons that I really like my infusion nurse. She always gets me with one stab. She happens to be an ER nurse at the adjacent hospital, and so maybe that is why she does so well. As Wiz noted, it is a learned skill. Your nurse needs to learn again.

I am sorry that your infusion nurse sent you home without the infusion.

Isn't there more than one nurse available? Is the infusion center connected to the hospital?

I've actually asked for another nurse and THEN a phlebotomist when two in a row couldn't get the stick...and the phlebotomist came in and slammed it home on the first try! ( I go to the oncology clinic at the hospital for my infusions, so there's ALWAYS someone else available.)

Sorry to hear it didn't go well for you. I hope they get you back in ASAP.

I'd be talking to the infusion center director too, to make sure that it is understood that this is a 28 day dosing schedule and that when it is missed, it sets YOU back.

Please let us know how it goes!:hug:

Can you get the July 30 infusion a day or two early?

I had the same problem this July and last July. Last year, the neuro refused to let me have it early, even by a day or two, and wouldn't let me have it when he wasn't avilable in case anything went wrong.

This year I asked the same question and he said " Of COURSE you can get it a few days early!":confused:

It's worth a shot, and it would keep you on the same schedule.

Hope it works out in your favor! Let us know how it goes!:)

I guess I could ask about the couple of days early. My center only does the infusions on M-W-F. I think I'll at least call today and check with my neuro on that, or do the split. Have the next one a five days late, and then the one after that 2 days late and be back on my Wed. schedule.

Okay, I just decided to do my next one 5 days late, and then the next one will come 30 days after that. Hopefully splitting up the time will be the best route!

Infusion #4 6-17-08
 

Just an update - All went fine with infusion. I also passed the liver and antibodies test prior to infusion.

Hello, I'm in a dilemma thought maybe you guys could give me your honest opinion. I know I am the only one that can make this final decision and was going to leave my family out of it because if the worst happens I don't want them to feel guilty. I finally broke down and told my sister with the upfront statement that I just wanted her to listen. Listen she did then hugged me and said it sucked that I had MS and more than equally sucked that I am now faced with this decision. Good answer sis!

So, my dilemma is I have been on an interferon (Rebif) which caused me to go into a deep, deep depression with suicidal tendency so neuro switched me to Copaxone and refuses to prescribe interferons for me ever again. I have been on Copaxone 2+ years but I have started having these IPIRs but not the typical one. Mine consist of major pain in back, neck and head that last about 15-30 minutes and then sometimes I have some leftover pain for +-24 hours.

They started to happen with more and more frequency and neither Shared Solutions nor my neuro know of anyone else with similar experience. They have no idea if they could cause permanent damage.

My neuro is leaning towards taking me off Copaxone and starting Tysabri. Now, my dilemma-I am a melanoma survivor. I have been cancer free for 13 years but I remember the fear of dying like it was yesterday.

The recommendation from my neuro is that I have a full body check with a dermatologist, which is scheduled for tomorrow, and then if that is clear go through the rest of the process to start Tysabri.

The month of May was a busy, busy month for me. I haphazardly did my Copaxone injections but this week have started back full time and no IPIRs. I plan to continue with the Copaxone until the decision for Tysabri has been made.

My MS is very steady and I am on disability but I am able to go about doing most everything but with daily pain, cognitive issues that are not noticeable but I know they are there, fatigue, and emotional lability. Thank God for drugs that help me through the day.

So, in all honesty, what would you do if you were in my situation? I know no one can decide this for me but just needed to talk it out and get some opinions from the experts.

Thanks for wading through this small novel.

I'm so sorry you have to make this decision, Sassy :(. I would maybe wait and see how you do on C for the time being. I know no one is gonna want to hear what I have to say next but I'm gonna say it anyway :). I always havethis niggling little fear in the back of my mind about Ty. :(. Purely because I feel like a guinea pig since there are no long term studies about it's effects. I'm still a newbie to this disease and a lot of things scare me though :). Sassy, this is such a personal decision that I think you might to think about it for a while and keep reading up on Ty. I wish you much luck :)!

Joelle, your opinion is great appreciated and I certainly hope others do just that, give me their opinion and not argue about anyone else's opinion.

I know Tysabri is a touchy subject with some people, I happen to be one of those. LOL

I anxiously await some of these current trials to be finished and look forward to having more options. I have gone to the website for trials to see about being in a trial but because of my age, 58, I seem to be too old. Seems they haven't heard that 50s are the new 40s, or something like that.

Sassy, I agree with Joelle. It's your decision at the end of the day. You have a lot to consider and you have to sit down and seriously think about the pros and cons of what you want to do.

Have you thought about doing C every other day instead of every day?? That might be an option.

Yeah, I know what you mean about the age issue with these clinical trials...:(

Hi Sassy,

I'm so sorry you have this dilemma! :( But you asked my opinion and here it is. If I were you, I would not take the Tysabri.

Melanoma cells won't necessarily show up in the skin only. I'm not a cancer expert, but I know of someone who was a long time Tysabri user (started with the beginning trials) and a melanoma survivor from many years previous. That person developed a brain tumor that had mestastisized from melanoma cells. It was a very bad tumor and I don't even know if that person is still alive. :(

I don't like to bring up this example since there's no way of knowing if it's really a direct result of the Tysabri... but I would want to hear it if I were in your situation.

But as everyone else has said, it's your decision...

Hi Sassy!

I am also sorry that you facing this problem. As you may know I have been through betaseron, copaxone, and tysabri all in one year. The reactions that I was having to copaxone were also considered out of the norm -- whatever that means. I had lower back pain with a few of mine in addition to all of the other problems plus cold chills and shaking. If you can handle the copaxone and if you and your neuro think it is working, I would consider staying on it for now. Perhaps you could consider the every other day option that was suggested. I remember reading one study that suggested that it was just as effective.

There are alot of unknowns with tysabri, and you could always reconsider it in the future. I have made the decision to take nothing for now, but my next alternative will probably be either be imuran or cellcept. Perhaps you could discuss these with your neuro. The MS center that I went to in St. Louis said that these are alternatives being used for those that cannot tolerate the other treatments.

Brenda,

I would not use Tysabri as a melanoma survivor.

You quality of life is a balance between dealing with the existing bouts of pain versus the potential for melanoma.

I think that the worries you would experience relative to melanoma would impact the quality of your life more than dealing with the existing levels of pain.

If I was in the same position, I would avoid Tysabri and pursue pain medication along with a mild course of a tolerable MS medication.

I would not tke the risk...

-Vic

Sassy, you already know how I feel about Tysabri being right for ME.

I didn't have ANY previous problems before MS. If I had, I would have done everything I could to find out how Tysabri would affect whatever it was that I already had. If there wasn't enough information to satisfy me, I would have waited and looked at every other option.

I don't have anything else but hugs and support for you in whatever decision you make.:hug:

Sassy, a person I used to work with ( retired and 62) now has melanoma in three places and none of them are on the surface of the skin. I don't mean to scare you. I saw that you were 58 and I am in my 50s too.

I believe its in their neck, abdomen and liver. Treatment is at Sloan Kettering and the course of chemo is not working so now they are adding a clinical trial for something else to try to make the chemo more effective.

This person has had PET scans to monitor the melanoma over the years.

The intial melanoma was on the scalp. This person loved to sail. That first melanoma was probably more than 10 years ago.

So I agree, a dermatologist scanning your skin is not enough. I hope this helps you.

:hug:Sassy,

I agree with the previous comments and know you are in a tough place. I think you should do more research and keep weighing the pros and cons of your choices. Have you tried solu-medrol? My Neuro offered me steroid infusions while on Copaxone to help with flare ups.

Avonex had the same horrible effect on me, so all of the betaserons were ruled out.

You can always call Biogen Idec (tysabri.com) and Teva (copaxone.com) to speak to their nurses, even if you are not currently using Tysabri. They will be glad to answer any questions.

I also scan clinicaltrials.gov periodically to see what other medications are being evaluated.

Does anyone know when the next Tovaxin trial starts?:Scratch-Head:

------------------------------------------------------------------

I finally had my 3rd Ty infusion. The nurse got my vein on the first stick.

Joellelee, Cheryl, Wiz, Vic, Barb, RW, starfish and hotfoot,

Thank you all for your replies, opinions and well-wishes. I must say I am pleasantly surprised.

In my mind what I thought I would hear is all the great things about Tysabri and maybe sway me to that side.

I am so thrilled you were all so honest. I am going today for the full body check, OH JOY! But its probably due anyways and I have a few "spots" I want checked. They don't look like Melanoma but just want to know what they are.

When I had my second MRI they were actually "ruling out melananoma of the brain" and when I learned I had MS it was somewhat of a relief. The only two persons I ever knew with melanoma died from it traveling to the brain so MS seemed like a walk in the park back then, now I wish I could walk that park but oh well I'm alive to camp in the park and ride my scooter around it. :):):)

And the suggestions for the every other day Copaxone sound like winners. I had cut way back on the injections, probably about every third-fourth day but have been back on them daily for about a week now. If I start having the IPIRs again I think I will try the every other day routine.

I was telling my SHG friends last night that I am very thankful for them but I did tell them that the daily check in here has been my lifeline! And once again some great friends here threw out a lifesaver :grouphug: to me and I will be forever grateful.

And if anyone has the opposite opinion of these I'm very willing to listen.

#15 down
 

I had infusion # 15 today.

Got home from work at 6:30 a.m, threw myself into bed and went right to sleep. Hated to get up to make my appointment, 5 hours of sleep doesn't work for me when I need to sleep!

Hit oncology right on time, the nurses were all prepped and waiting for me, everything went smoothly, infusion started at 1:30, much quicker than usual. The place was empty today, so I got to chat with the nurses.

There's two new Ty patients coming on board this month, so I won't be the only one again!!!:) Both are MS patients, they haven't had any Crohns patients yet.

Noted during a quiet moment that I was starting to itch in places that couldn't be scratched at that time...quietly got up and did a trip to the ladies room and ...I found a FLEA!! :p

I was getting all worried that I was having some sort of reaction :cool:
I was within a minute of calling the nurse back in and telling her to slow the drip and get the Benadryl ready!

The rest of the infusion went smoothly and when I got home I did the 1800petmeds order for Frontline. :winky:

I'm tired and ready for bed NOW, but I am forcing myself to stay up for a few hours so I can sleep all night...hopefully!

Onwards and Upwards!!