Just another Update:

The UTI is almost gone.

I am dealing with another issue associated with a reduction in the power of the immune system....a minor fungal infection.

The last time I had this issue it was in the middle of my Tysabri process, and before that it was thirty years ago when I played sports.

The Klotramin is helping as it always had with this issue.

Fungal infections are a well-known side-effect of having a reduced immune system.

Time will tell when things can proceed as planned with Tysabri.

-Vic

I had so many infections last year, Vic, until I realized the underlying problem was an ongoing "inflammed" (translation: infected) root under my cap. As soon as I had that tooth removed, all the other infections stopped.

My advice is take stock on every part of your body that MIGHT have something going on that you may be ignoring.

Hope it all works out well, and you can continue with your success.

Cherie

Question:

Love of my life (LL) has recently developed a new symptom after a year on Tysabri - that being intermittent severe body-wide joint pain. Yesterday she was in agony - today she's just fine.

Have any of you had similar (MS) symptom or (maybe Tysabri) side effect? Thanks in advance for any feedback you can provide.

I don't recall hearing of anybody else with that symptom from Tysabri. Since it's gone, could it possibly be a touch of the flu or something else like that?

I hope it was a one-time occurrence for your LL.

IF it keeps up . . .

I suddenly developed a very rare (and serious) "allergy" to Tetracycline, and that is exactly what it did to me.

If it goes away, it was probably coincidence.

Cherie

Hi Wiz, this is alias lindaincolorado :) Twice I have gone 5 weeks and it was rough. The fourth week I start to run down, so the 5th was not good. My daughter told me to NEVER do this again ;)
Good luck,
Linda

I have what I used to call joint pain. I found out that it was spasticity in my case. It is the muscles spazzing and pulling on the joints that they are joined to. It's not always the joints and that is what confused me. I get it regularly in my wrist joints, knee joints, foot joints, toe joints and sometimes in my hip joints! It all depends on what muscle group is spazzing. I swear sometimes I feel like I have been hit by a car! :cool:

I take baclofen and tizanidine for spasticity now and it controls it (when I remember to take it!) and it relieves it when I DO forget.

Maybe your LL could look into spasticity control and see if it helps.

Let us know how it goes and tell her we're pulling for her! ( only not on her joints! :p)

Hi Linda! :)

It will be five weeks, two days on Monday. Last night DH thought I was having PMS, though I'm past that stage in life. :o I need my Tysabri fix, Monday will be infusion #18 for me... (right RW? ;))

Boy, if they kept moving me back like that I would be doing some growling to both my doc and the infusion center! You should point out that Tysabri is designed to be infused every 28 days...repeatedly... if it's your infusion place that is doing this and not you or your doctor due to something going on with YOU! It's a different story if it is your choice. They are making a LOT of money off of you/your insurance. It's NOT ok to be scheduled at the convenience of the infusion center!

I have never been moved back even a day since the first infusion when they didn't get the vial in time. I've been moved up a day or two for both my convenience or for theirs when the infusion center and the doc and I were in agreement, but never back. I also schedule my appointments at the same time/same day every month for 6-7 months at a time.

Is it #18??? :p Congrats to you, partner!:yahoo::You-Rock:

RW, good one !

Thanks to all for the feedback. LL has been prescribed valium for spasticity - mostly muscle cramping. The joint pain is intermittent. She has good days without any joint pain at all - then she might have a week of severe joint pain without relief.

The valium doesn't seem to have any effect on relieving the joint pain although it does help with occasional muscle spasms. I suspect that the joint pain is a MS systemic symptom and not a side effect of Tysabri since this symptom manifests itself regardless of her medication regime with valium and seems to have no direct correlation with Tysabri infusions.

RW, have you ever used valium for spasticity? Are baclofen and tizanidine comparatively more effective? This joint pain issue is really impacting our quality of life. As you described it, LL also has days where she feels like she has been hit by a car and can't get out of bed.

Appreciate your feedback.

JJ

I haven't used Valium or any other benzodiazepines for any thing. I try to stay away from meds as a whole, but the spasticity was really getting to me and interfering with daily life so I took the advice of my doctor ( and one of our valued posters-Thank You MBSews!) and decided to just try the tizanidine before I went to sleep. I was having spasms that kept me awake at night. The tizanidine relieved them and continues to work as well now as it did the day I started it.

I held off on the baclofen for as long as I could, but when the pain started interfering with my daily life, I started on that. I have gone from 10mg 3xday to 20 mg 3xday. There are days when I am ok and I don't take the full day's dose. There are times when I do it all. So far it is relieving the spasms for me and my doctor is fine with me taking it as needed.

It doesn't work for everyone. I am sure others will chime in with what has worked for them. The whole point is to accept that sometimes meds DO help and to work with your doc to find one that works for you. Medication can make a difference as to whether you walk through your day like this:mad: or like this :)...:p

Edit to add that joint pain is a side effect of Tysabri ( contained in your drug leaflet included with vial of Tysabri in box-Ask for the box and the vial!)

Hope this helps! :)

Update on my Tysabri/Steroids
 

Sorry to have not posted in awhile. I had posted about the downhill slide that I thought might be connected to Tysabri - but it wasn't. It was a major excerabation. My neuro admitted me into the hospital, ran three MRIs and saw a lot of progression and enhanced lesions. He put me on IV solumedrol for 5 days.

After much investigation, he did tell me that he didn't want to change the Tysabri schedule. I was released from the hospital on September 19 and had my second Tysabri infusion 9/26.

I am getting my strength back following the steroids and I had no issues with the Tysabri infusion. I did not pre-medicate this time as the Tysabri nurse chastised me last time (even though my neuro wanted me to).

I am looking forward to great results from Tysabri. Thanks for all who gave me feedback!

I get my infusion tomorrow, I'll update then. BTW, I'm going to let them know that I want it every four weeks from now on, even if a different doctor needs to check in on me.

My appt is at 11:15 am, and I can hardly wait! I even packed us a lunch to get us through until suppertime. :)

Glad to hear you're on the comeback trail! Please let us know how it goes for you! :)

JJLL,

Since this is intermittent (and perhaps a side-effect of Tysabri or some other med), I'd suggest that LL keeps track of the meds used to see if this the joint pain follows a pattern.

I'm not sure why my doc and pharmacy think joint pain from an allergy to meds is serious business, but I am not even permitted to take Tetracycline any more for that reason.

If you find there is a pattern, i.e. 2nd week after infusion, or day after taking some other med (each time), then I would definitely bring this up with LL's doc AND neuro.

Cherie

I had infusion #18 today. It went well, I dozed a bit as usual, then took a good one hour nap on the way home as DH drove. :)

I'm getting another MRI next visit. My doctor wants them done ever six months. I think he said it's recommended to be done that frequently.

I'm going to take it easy the rest of tonight. I work the next four days in a row now.

The doctor said I should keep doing as good as I am because it makes him look good. :) He read my blood tests I had done recently that I had faxed over to their office. He noticed that my cholesterol was kind of high at 217, but then saw that the good cholesterol was 90 and the bad was low. So it's a really, really good ratio.

I mentioned to the doctor that I felt tired the past week and that it has been over five weeks since the last infusion. I think it was just a scheduling thing at their office and I don't foresee it happening again.

So, all in all a very boring (but good) report. :)

BTW, yesterday I mowed the lawn and raked, then burned the yard waste, about 2.5 hours outside in the 68 degree weather!!!!

TIME FOR ME TO END TYSABRI

Why?
Biogen has been great to me, buth the infusion center costs have gone through the roof.

After a 20 minute meeting with my neuro-team, we have agreed that it is time to find a way to resolve this problem.

Even though I have insurance through Anthem Blue Cross of California, they have not paid for my infusion center costs to the point where it is still a viable option.

MS treatements and insurance premiums have cost me over $110,000 over the past few years and I have said finally that enough is enough.

Just by chance, after my meeting with my neuro-team wherein we made a decision to switch to Rebif, the Rebif representative happened to walk into the office and provided me and my team with the paperwork to provide Rebif to me for one year at a cost of $51 per month. That will save us thousands of dollars per year.

So, although my Tysabri journey has come to an abrupt end, my Rebif journey is about to start.

Tysabri Summary - 18 Infusions:
(a) Fatigue - greatly reduced (good)
(b) Ambulatory abilities - declining (bad)
(c) Vertigo frequency - low (good)
(d) Ankle movement - low (bad)

-Vic

Aw Vic,

I'm so sorry you have to stop the Tysabri, but I understand completely. There's no way I could have it if it cost that much either. Our medical costs are nearly $10k per year as it is, but it would be hard for us to pay much more.

That said, Rebif is an excellent med. I liked those shots much more than either Avonex or Copaxone. I have a problem with depression so Rebif didn't work out for me, but the injections themselves were easy to tolerate.

I hope you'll get good results with it, and I'm glad you and your DW are going to save a bundle of money too.

Wiz,

Rebif should work fine for me. If for some reason it is not tolerable then I am open to anything else.

The funny thing is that taking shots every two days does not bother me...it just reminds me of the good old days when I was using Avonex. ~LOL~

I already miss the great nap that Tysabri provided, however!:)

-Vic

Sorry Vic..:( Another door has opened, though..:)

Consider adding LDN to your gunbelt??:cool:

Vic,
I am so sorry to hear this. You have been a wealth of information for a LOT of people, and your charts and graphs made your journey easy to understand and follow.

Good Luck on your journey with Rebif! I don't have any tips or pointers, having never had the pleasure of the Rebif. All I can say is do what I did with Copaxone. Every time I did a shot, I did something nice for me!

(y'all thought i was gonna say i did a shot of something, huh? :p )

Sorry, Vic. :( There's no way to get help with the costs, eh? :(

I thought people had to try the CRABs first before going to Tysabri? :confused: I realized they were putting "aggressive activity" patients straight on Tysabri now, but I thought everyone else was supposed to use Tysabri only if they couldn't tolerate the CRABs? :confused:

Cherie

Hi Vic,

Wow, I'm so sorry to hear this. Drat! Why does medication have to cost so damn much??!! It's just not fair. :mad: On the other hand, $51 a month ain't bad! I'm sure the extra money in your pocket will be nice.

You were an inspiration on the Tysabri thread -- I hope you still check back with us here. I feel like we are losing part of the crew.

Good luck with the Rebif. :) :)

Natalie :hug:

Cherie,

That used to be the case, but the trend has changed and alot of people are starting with Tysabri.:)

-Vic



Natalie,

I feel really good about saving money. This will help a bunch. And, I will always check in to see how everyone is doing.:)

-Vic

Sometimes you just have to laugh...

The plan to use Rebif required me, like all of you, to read everything about the medication (much as you all have about Tysabri;)).

There was a small line in the "warning" section of the Rebif paperwork that indicated that a potential adverse reaction could occur becuase I had a seizure 17 years ago (and have been taking a minimal dose of Dilantin every day just in case). Now, that was a long time ago...but it is in my medical records.

So, I decided to check my Life Insurance Policy to see if taking contradicting medications would void the policy. And of course, it would void the policy.:rolleyes:

Some things just make you sit back and laugh,..., and this is definately one of those things.

Time to read more on the other available medications.

The GREAT news is that I am now going to also save the $51/month for Rebif and my Life Insurance policy will remain intact for Tania!

LOL:)

-Vic

Oh criminy Vic. What next??? How about Copaxone, would that be an option?

It could be a good choice, Wiz.

Thanks.

-Vic

Vic,

I still check in on this thread occasionally, and was really sad and frustrated for you that you are going through this. I can sort of relate although my problems were not with insurance -- just the meds.

I'll be starting Tysabri on Monday afternoon. I have a friend driving me and who will work on my 5 week averages while I'm infusing.

I am suffering from a horrendous depression at the moment and working as a teacher is really showing me my cognitive deficits frequently. I've been feeling lousy since May so I am hoping that Ty and an increase in my AD and Xanax will help me to feel better soon.

Thanks for this thread. I like being able to come and learn new stuff.

Weebs

Hi Weebs!

Welcome to Tysabri!

Sorry to hear the depression is so bad. I'm glad to hear you are working with your docs on this issue.

As for the cognitive stuff, a lot of us can relate to that issue!

Please let us know how it goes Monday, and good luck! :hug:

You gotta love the ridiculousness of the insurance system and all the "exceptions." Absolute craziness! Sorry for the roller coaster ride. But you are right. I guess all you can do is laugh and just "be" with the situation.

:)All is well.:)



After consultation with my life insurance company's main office in St. Paul, MN the entire issue has been resolved.

My local office said exactly the opposite of what is true and binding in my policy: "If I fail to address MS medically then my policy would be voided".

My local Life Insuance rep is an idiot.:confused:

Therefore I am going to join the Rebif Train after all!

Great news indeed!:) Especially since for the first time in years (and after being off of Tysabri for several weeks) the numbness in my fingers has returned (i.e. Tysabri was working!:)).

Rebif should help and I am looking forward to it!

-Vic

Hooray!!!!!! :)

:Excited:Yaaay!

Well, finally something sounds reasonable and good, although it is kwappy that you had to stop Ty and are feeling the results of being off of it. :(

BUT, in honor of your upbeat attitude toward this whole mess, I am just really, really happy that this part worked out, and that you too can be a biffer.:yahoo:

Great news, Vic.:) I hope Rebif keeps you stable..:hug:

Happy to hear the good news, Vic!

Bravo to you for asking the hard questions and holding the insurance business to the standard they SHOULD live up to!

Infusion number one is done with no problems. The worst part was waiting an hour for the doctor to come and personally meet me and do the Tysabri talk. I feel a bit headachey now with my stomach off a bit but that could be because I barely ate today.

This doc told me flat out to start taking 2000 IU of D3 daily along with a multivitamin with iron. He also said his patients are generally noticing a change somewhere in the range of 2-4 infusions.

The place where I get my infusions done is a palace; it's beautiful. A chandelier in the waiting room. You get your own private little suite with these special chairs. They have a TV/DVD combo with the volume coming right out of the back of the chair area so you don't disturb anyone else. They have a coffee, juice, and hot chocolate "bar". There are two nurses stations with people there all the time checking on everyone. Wooden shades, gorgeous wall paper, etc.

This guy is a pediatric doctor by trade and wanted to build this infusion site for all sorts of infusions that people need. One person was getting iron, the guy next to me was IVSM, and there were others you could get glimpses of, some with small children.

He got me in the hand on the first stick and was kind and friendly. This is so much better than trying to do this at my old neuro's office. This place is truly like the Taj Mahal of infusion centers.

I hope this works for me!
Weebs

Glad to hear things went well today! The infusion center sounds lovely!

I go to an infusion center in a hospital and it's mostly used for oncology. They've made it cheery, but it's a bare bones operation and VERY small. They DO give me coffee and crackers and peanut butter when I ask, if I have an infusion scheduled at lunchtime, they give me lunch too! :D

It's best to eat, and drink lots of fluids before infusion. It will help settle your stomach, and makes getting the stick easier.

Let us know how it goes and congrats on your first infusion!:)

(p.s. I do the Vit. D 2k per day too, along with a multivite/ iron, calcium w/D, fish oil, and a baby aspirin daily)

WOW Weebs...what a marvelous place to be infused and glad it went well :D
I have had 25 infusions at 3 different places; I may get water, coffee and a cookie or maybe at one even a sandwich BUT the settings are nothing like yours.

I always make sure I am well hydrated and have something in my stomache.

Hope you get great results!
Linda

I have to say I'm a tad envious of Weebs. It sounds more like a spa than an infusion center! :D Glad the first infusion went well, Weebs. You made it through!

I had infusion #4 today. They really need to get on the ball at my MS clinic. I was sitting in the waiting room for 40 minutes even though a chair had opened up within 10 minutes of my check in. Then I got "Where have you been?!" and a glare from the nurse in the infusion room like it was my fault. I explained to him that I got there 10 minutes early and that maybe he ought to check with the front desk and chew them out since they messed up.

I was more nervous going this time I think because the last visit was so stressful (stuck on the little itty bitty couch because they had no chair for me among other things) and I also had a yucky 2 day flu syndrome and collapsed when I got home. Today, though was a piece of cake once I got established. I'm not feeling flu-like or even tired which is great news!!! Yeah! :yahoo: