Tysabri - Month 2

[Cosmobirdy]

Hi Guys,

Sorry it's taken me so long to update things.  It has been kind of a rough month on my end.. :)  Fair warning - this is kinda long, lol.

My last infusion was Nov. 4th.  Two days later I got a wicked virus, and it took 5 days before I felt better.  I got sent home from work 2 days in a row cause I was so sick.  Two days after I got over that, the pain in my hip started again.  This time, after a few days, it also went down my thigh and into my knee.  When I got my infusion, I had told my neuro about how bad the pain was last month, so he prescribed me some Vicodin.  (I am always so grateful that he always believes me, and doesn't want me to have pain if we can help it - he knows I am not a wimp or a drug seeker, and that makes a huge difference.  Plus, he's compassionate... )  He said he hasn't had any of his other patients on Tysabri who have had problems with the joint pain, but from the handful of people I have been in contact with, it is not unusual at all.  And the ones who get it say it is severe... so it's not just me, lol.  For some it has gone away over several months, some continue to have problems with it.  It's hard to describe - almost feels like the bones are grinding against each other.  Another person described it as feeling like there was ground glass in the joint.....

The first 3 or 4 days, the Vicodin did very little.  I am a pretty tough old bird, but it was really bad.... :)  I got sent home from work (Again!) the 2nd day of the pain, because at that point I couldn't stand up straight, was limping pretty bad, and had some shortness of breath (I guess the pain was worse than I even realized) - and that was WITH the Vicodin.  The hideous pain eased up to become just terrible by day 5, lol.  Then the Vicodin started helping buffer it, but it lasted another week, and I continued to limp and walk very slowly during that time.  So it started a week after the infusion and lasted a week and a half total, exactly like the first month.

So I actually gave in and I  have ordered a cane.....it was very hard to accept that I might need one.. :)  I just got it in case I get the bad pain again this month.  I finally realized that it was dumb to be too proud to use something that may help make it less miserable for me.  I walk up and down a long hallway all day at work, and I honestly don't think I could do that for a third month with that kind of pain.  But I got a really cool one, so that makes it a little better in my head, lol.  Found a site that had some really neat and beautiful ones (as these things go), so holler if anyone is interested and wants to check out the site... :)

Then on Thanksgiving day, I got sick again.  I am reasonably certain the Tysabri is just making me unable to fight off stuff that normally wouldn't have phased me - before this, I was the kind of person who rarely got sick.  When I got sick at the beginning of the month, it was mostly the worst diarrhea I have ever had in my life.  On Thanksgiving, it was violent vomiting - where some of the blood vessels around your eyes burst - from the sudden pressure, I guess.  Had to work on Black Friday, but got sent home yet again.  I didn't even last an hour there... was still vomiting, and by then was running a low grade temp.  This virus lasted a total of 3 days.  This past week I have actually felt pretty decent... :)

So I got sent home from work a total of 4 days this month alone - that has never happened before, in my entire work history.  Up till now, I have rarely missed any time, even during all the months when I have felt like death.  It is frustrating...but I am still optimistic that Tysabri will help me in the long run.  I am still commited.....I am gonna stay buckled into this ride till it comes to a full and complete stop.. :)

On top of all this, we got notified this week that the city my husband works for is changing insurance carriers as of Jan. 1st.  I had a stroke - how was this going to impact me???  So far I have found out that copays, decuctibles, and the out of pocket limit for the year should remain the same.  And I have verified that they will not consider the MS to be a pre-existing condition.  So that's a relief, and one hurdle down.  

But there are still alot of unnerving questions that I am trying to get answers to.  Will the new policy even cover Tysabri, and will it be at the same copay we currently have?  Will they consider me eligible?  Our current policy only required that I fail one type of treatment - I know some policies require you to fail two types before they will authorize Tysabri.  Will the Tysabri have to be pre-authorized all over again?  The new policy kicks in Jan. 1st, and I will be due for my next infusion on Jan. 2nd.  If it has to go thru that process all over again, that could delay my next treatment up to 2 months.  When I had the 4 week wash out period between the Rebif and Tysabri, I really backslid.  The thought of possibly going without treatment again gives me the willies....

So I hit the ground running and made what felt like 500 phone calls.  I have several people right now checking into different aspects of the insurance changeover.  Fortunately, once I explained my situation, and what Tysabri is, and the potential impact of NOT being able to use it, they really understood and want to help me.  They understand that my situation is unique compared to most of the other people in this group of insurees.  So I am trying to be a big girl and remain calm till I have some firm answers, lol.  The first day I was a complete mess - cried on the phone every time I was talking to someone about it.  Very mature... :)  It's just extra stress I didn't need.  I finally made the decision to do this, commited myself to riding it out and seeing it thru - to potentially have the rug pulled out from me just pushed me over the edge.  

So, we'll see what this month brings... :)  I go for my 3rd infusion this afternoon.  Hopefully, things will be a bit easier this month....but I have faith, and I know everything happens for a reason, and in the manner it is meant to.  That helps get thru the rough times....

Sorry this was so long..... but I promised to tell you guys the truth as this went along, good, bad or indifferent, lol.  All in all, I am still doing pretty good, so I can't complain.... :)  Hope you all have a great weekend!

Rita  

[Lulu54]

Hi Rita,
It is so kind of you to share all of your experiences with Tysabri here so those of us who may someday face that decision will understand what is involved.  The rest of you who also take this IV treatment - please take some time to post your experiences.  We know everyone is different in how they react to everything !LOL

Be well my friend and enjoy watching the snow from indoors!
Lu

[Cosmobirdy]

Hey Guys,

The site for the cool canes is "fashionablecanes *******".  If you check it out, let me know what you think.. :)  The one I ordered is # 75100, and is all wood.  The handle is stained deep blue, and the shaft is very light wood, with tiny, deep blue flowers and leaves stained on it.  I had no clue about canes, but the site is very informative.  Then I placed my order by phone, and they were VERY helpful and friendly.

The infusion yesterday went fine.  I forgot to take the Claritin-D before hand, but I still didn't get any nausea or headache, like I did with the very first infusion.  I was just tired the rest of the day, but I had been tired the couple of days before the infusion anyway.  It seems like you kind of crash the week before the next one, as it wears off I guess.

Talked to the neuro about getting sick, but he didn't seem too yakked up about it, lol.  Said since it is winter and there's so much going around, so long as I'm not getting any sicker than that, he's not real concerned.  It just kind of comes with the territory now.. :)  He WAS concerned about the hip pain, even tho I told him it doesn't seem too unusual from the people I have talked to.  He said that since Tysabri is still basically new, he doesn't want to take any chances - I guess it might cause something more serious??  So he is probably going to order some XRays to be safe.  Sigh....

I think it really caught his attention that it happened again this month, that the Vicodin didn't even help at first, and that it has actually caused me to buy a cane.  And truthfully, the pain has continued after that week and a half earlier this month - just usually not as bad.  Some days it bothers me more than others.  Hopefully, it is just a crappy side effect of the Tysabri and nothing more.. :)  

Bless his heart, he did give me a script for some Percoset, for when the pain is at it's worst.  I obviously can't take it at work, cause it will probably make me loopy (more than usual, lol!), so I will still have to stick it out there with whatever help I can get from the Vicodin when it's bad.  But at least this way, once I come home, there's something I can take to give me a break from the pain to some degree, at least for a little while... :)

Kathy, I have used heat on the hip, and that helps some... :)  And I am taking vitamin C and washing my hands alot, too, lol.  Staying away from sick people is a litte tougher, since that's kinda what I do for a living, lol.  But when someone comes in who is hacking up a lung and seems to have obvious cooties of some kind, if it's not an ultrasound, the other folks where I work will take the patient so I won't be exposed.  I am so blessed, cause my co-workers are so good to me, and so understanding and patient...

Thank you all for your caring thoughts and constant support - it means more than you will probably ever know... :)  I miss you guys, too....I wish I could spend more time here, and participate more.  But with a little luck, the Tysabri will soon start to really kick in, give me some more zip, and stop kicking my butt, lol.  Then you guys will be sick of me... :)

Hope you all have a great weekend - it's snowing here!
Rita

[Cosmobirdy]

Please don't misunderstand, you guys - I am by NO means any tougher or stronger than anyone else here.  We all fight different battles every day, both big and small.  I am just stubborn, (and probably kinda stupid sometimes, too!) and I hate to give in or lose, lol.  And truthfully, I have learned over the years that for me, the most difficult struggles.....the ones that have brought me to my knees and pushed me to the edge.....are also the things that have brought me the most blessings in the long run.  I know it sounds corny, but for me it has proven to be true - and it is what I try to always remind myself of.

I am continually in awe of everyone here.... so many of you are dealing with so much more than me.  There are so many here who deal with so much physically..... who have been walking this road for such a long time.....who have to keep adjusting, over and over, to the new "normal" as things change.  There are those who are still in limbo, dealing with bodies doing strange things, and still no definite reason why.  People who are on all ends of the spectrum, who every day cope with some aspect of the MonSter.  And yet, everyone always is here to help and support and encourage everyone else.  

You are all my quiet heros, and you have been since I first found this wonderful family, before I was ever diagnosed.  My goal is just to try to deal with things with as much grace and dignity as you all have shown...... and still try to laugh and see the joys that are in each day, no matter what.  Some days are harder than others, but when we come here, it's like breathing a sigh of relief - because everyone else always understands.  EVERYONE here, dealing with what we all do, is tough and strong - this family has no wimps.. :)  

Rita

[mae1]

Hi,
I'm on my 10th infusion and doing very well.... I also have had a little joint pain but never anything about the tysabri, very interesting..
thanks for your update.
april

[Fluffysmom]

Good to hear from you; I told you when I first met you that you were brave and tough, but NO, you had to say that you were just doing what had to be done.

My friend, the above posts (and the ones before it) prove that you are indeed brave and strong and tough! LOL!  Getting sent home from work 'cause you go in when you can barely walk, or are projectile vomitting! (maybe I exaggerated that, but you get the picture)!

I'm sorry its been so rough, but glad that your doctor was willing to give you the Vicodin to see if that could help with the pain.  Have you tried ice or heat (can't remember if you said last time)?  

Oh, that was NASTY sick that you got; I was whimpering 'cause I caught a cold where I hacked up yucky stuff and lost my voice for a few days.  Actually, I didn't whimper much, because I was in Disneyland with friends with three young boys, and was taking Provigil, so I actually had a good time, just couldn't talk and had to carry a lot of napkins and kleenex.

Now you have to do battle with the change of insurance; good thing you're making a pre-emptive strike and not being caught unaware after January 1.

I hope your bad symptoms go away or lessen quickly.  Can you take extra vitamin C and maybe some zinc after your infusions to try to ward of viruses?  Maybe your doctor will have some good ideas.  Wash your hands alot, stay away from sick people, all that good stuff.

I understand that you can't spend much time posting with all you're dealing with, but I want you to know that I miss seeing you around. I think about you often and hope that things are improving for you.

Hugs,

Kathy
  

[doni54]

Hi Rita,

I'm a wimp!!!  Don't know if I could be as tough as you, you are to be admired, like Shell says.

I will pray that everything with the ins will work out to your advantage and not cause you any problems.

I hope that your side effects will go away and let you not have that awful joint pain, it sounds horrible.

Thanks for letting us know how you're doing, we miss talking to you and hope that you can come back more often.

Have a great weekend, and take care of yourself!

Hugs,
doni

[sllowe]

WOW! YOu are one tough cookie.  Dragging yourself into work only to have to drag back home - my gosh that must of been tough.

I admire your perserverance.  I admire your will to stick to your committment.  Your fight and courage is an inspiration to me. Thank you for sharing your past month, thank you for showing us how to fight a good fight.

You have a nice weekend too. And thank you so very much friend,
Love,
shell

[cjacks]

Hi Rita

   I'm  so sorry the Tysabri is such a pain right now .  Good luck this afternoon with this infusion.  

You do sound very tough and hearty to me .  I don't know how you all go to work with this stuff ..  ( I feel like such a wimp)  You ladies/men inspire me .  

Where did you find the fun cane ?  I've been checking out sights and confused on what I need.. Three of my docs have suggested that I get one .. but I was so opposed that I never got any info on who should advise me  (she says shyly).  I guess I need to..    There's such a huge variety , how did you choose ?

Take care and all the best with the meds this month.
Love Light  Prayers

Jo