My husband is hoping to start Tysabri soon but currently his neuro's office is not set up for it. They aren't even sure who to bill. He takes Rebif now. Will you be taking Tysabri alone or with one of the other treatments? Once he starts the Tysabri I will post his reaction and progress. Good luck with the Tysabri and we're looking forward to sharing information with you.
I will be taking Tysabri along with Avonex, which I have been on for over a year. I did not have a difficult time getting it, because my doctor's office and the drug company (Biogen) coordinated everything with my insurance company.
My doctor is not happy with the Avonex, but before he switches me to Rebif he wants to put me on Tysabri. If that works then he won't take me off of the Avonex.
The nurse that heads the office contacted Biogen, who then confirmed my insurance benefits and contacted the doctor's office and myself to let us know that I was approved for the treatment.
It also went a little more smoothly for me because I am already on Avonex, which is also made by Biogen. Since I get it directly through them, they already had all of my information.
The people at Biogen are extremely helpful.
Your doctor's office has to be the one to get the ball rolling by contacting them and telling them that they want to put your husband on Tysabri, then they will call your husband to get his information, and then contact the insurance company and find out if they will cover this treatment. Then they'll call you and call the doctor's office.
I look forward to sharing my experience with you as well.
Elyse, Thanks so much for the information. The neuro's office told us to call back in January and they "should" have more information. The MS Center here is suppose to be one of the best in the area, but I think they have too many patients to give the attention needed. Last time I called, I was on hold for 35 minutes before I could even leave a message asking for a call back from the nurse practitioner! If they don't have an answer for us in early January, my husband is switching neuro's. Again, best of luck with your treatments and hope to hear from you soon.
Good luck! I can't believe that your doctor's office is making it that difficult to get the Tysabri. I saw my neuro on November 30th. He told me that it was coming out that week, and he wanted to start me on it but he didn't know when they would be getting a shipment. So I gave all of my information to the head nurse and she said she'd call me when she knew more. A few days later Biogen called me saying that they had been contacted and were starting the process of verifying my insurance info. The doctor's office then called me to say that as soon as they are given permission from Biogen, they will call to set up an appointment. It took a few weeks for my insurance company to give approval, but everyone was on top of things from the very beginning and it moved very smoothly. They called to set up an appointment, and then Biogen called to tell me that I was cleared by insurance, and to explain my copayments. (I have a $15 copay for the medicine, and a $12 copay for the office visit each time. Not too bad.) You've got to stay on top of your doctor's office. In fact, you may want to call Biogen yourself and have them be the ones to get the ball rolling on the insurance verification while you are waiting for the doctor's office to get their act together. Unfortunately I can;t give you the 1-800 number for them, but you can find their website very easily.
Hi, I am on Avonex and I have been doing IVIG for awhile now, and the plan was to switch as soon as the ins okeys everything for the Tysabri. I am in the process of changing ins. and so it has to be started. My doctor has started doing them already and he is taking pts off Avonex to begin with and can always add that back on if needed. I am looking forward to a 1 hour IV as compared with the4-5 for IVIG!!!! I wish I could help with side effects, but soon we all will be able to give input!
Hey purple - good luck tomorrow!. . my infusion for tysabri is for 8:30am EST. . hoping to come into work after. . might even treat myself to a cab after the treatment -woo-hoo! livin large! I'm gonna try and check in later, we should compare notes as to side-effects.
I am fortunate indeed, and grateful to have started Tysabri. My only side effects were briefly pounding heart, and feeling too tired to think, move, or talk, as if I was about to become pleasantly unconscious with none of the pain I usually have. As if I had been drugged--of course, I had! The side effects wore off and I felt quite encouraged that there may be help for me. Maybe my nervous system won't vanish.
The infusion took longer than an hour, then subsequent observation for another hour or two. I was told infusion may be given only if provisions to resuscitate are at hand. It was apparent that having patients in the office every month for such lengthy Tysabri treatments will require modifications in how MS doctors do business.
I'm not surprised doctors make a complicated situation even more frustrating. My previous neurologist refused to get Tysabri for me--ever, not just now. I found someone else. A family member worked overtime making arrangements with Biogen-Idec, a pharmaceutical supplier, 2 doctors. A doctor must submit an application.
As Purple.... wrote, Biogen was wonderfully helpful.
My very best regards to all. I'm new, and perhaps haven't adequately introduced myself. I named myself in memory of a beautiful dove who loved me as his mother... His white body flying through the blue sky.
Well you guys aren't going to believe this one! I just can't even believe it myself.
I have always had very difficult veins. They're really deep and thin and squiggly, according to all the phlebotomists who have tried, and inevitably failed at taking my blood over the years. No amtter what I do (drinking lots of water is the best way to get veins to pop to the surface) they can never seem to find a good enough vein to start an IV with. When I was in the hospital in August for steroid treatment, it was so bad that they had to start a central line in my neck.
So anyway, I went to the doctor's office on thursday for my first infusion of Tysabri, and was very excited! I drank water all day and changed into a short sleeve shirt so they could have access to my entire arm(s). There was another woman there who was just starting her treatment and said that she had difficult veins. They got her IV in on the first try. Not me. They could not get one started. They couldn't even find more than one vein to stick me in.
The head nurse told me that if I want to receive Tysabri treatment, then I need to have a "port" put in. It's a portable catheter like they use for chemo patients, that sits right under the skin by the collar bone (or a little lower down on your chest) She said that until I get this done, I obviously can't get the Tysabri. Since I really need it, because my disease is progressing even with interferon treatment, I agreed to do it. Plus, what if on the off chance they did get a line started once and then couldn't get it started the next time? Or what if I have an allergic reaction after they take out the IV and they can't get another one started?
I have to have surgery! I thought it would be a very short procedure. She said that a surgeon has to do it, and that she could set up an appointment for me with the surgeon they always use, or I could find my own. I had my gallbladder removed by a family friend last year, and I LOVE him. He's done all of my family's operations. I wouldn't even dream of going to someone else. So I made an appointment with him, and his nurse told me that it would be an hour to hour and a half long procedure under general anesthesia! That's longer than my gallbladder surgery took! GET OUT OF HERE! I thought it would be a quick in and out thing. The central line only took about 20 minutes! So I have an appointment on tuesday to see the surgeon, and he will examine me, and then I will have the surgery on January 17th. I have to go for pre-op testing and everything!
So good luck to all of you who have already started your Tysabri, or will be starting it soon. I have to wait for mine. I am really depressed about this! And scared of the surgery. :*(
Hello Purple++++Hope your unexpected surgery goes well. Have they told you to stop taking interferon to prepare for surgery? When I had pre-op testing last year, my blood failed because of how much interferon had reduced the number of blood cells present. I had to stop taking interferon for a few weeks, then get pre-op testing over again, at which point my blood just barely passed.
By the way, in order to be prepared for possible allergic reactions to Tysabri, they didn't take the line out for quite a while. They just infused saline after the Tysabri. (That helps get the rest of the Tysabri out of the line as well.) Best wishes to all.
No, they did not tell me anything about the interferon causing problems with my blood tests. God, I hope it doesn't. I really don't want to stop taking it, even for a few weeks. I'll have to discuss that with my surgeon when I see him on tuesday. Maybe he can explain to the hospital that I'm going to have a lower blood count because of the interferon, and not to make a big deal out of it. I really want to get the treatment started as soon as possible. This isn't fair.
When the nurse was talking to me about having an allergic reaction to the Tysabri, she told me that she was concerned that even if they got a line started for the treatment, the possibility of the IV infiltrating and having to be removed in the middle is very real. My veins are just THAT bad! She was worried that if that happened and I had an allergic reaction, they wouldn't be able to get another line started. They'd wind up having to admit me and put another central line in my neck, which I just couldn't handle. It just seems that getting a port put in would be the easiest, safest thing.
Thank you for informing me about the problem with the interferon and the blood tests. I will talk to the surgeon and also call the nurse at my neurologist's office on monday to ask her what she thinks.
I guess if I had to, I could stop the Avonex and put the surgery off until President's Week in February. (I'm a teacher and I really don't want to have to take time off and leave my class with a sub. As it is now, I'm doing it on Martin Luther King day.)
I saw the surgeon tonight and he told me what he will do. It doesn't sound too bad. I trust him.
I am just nervous about the pre-op testing. Although I am thinking that since it is the neurologist who wants me to have this done, somebody at his office would have told me if they thought the interferon would cause a problem. I am having the pre-op testing done friday afternoon at 4pm. My surgeon said he would not operate if my white blood cell count is too low because the chance of infection would be too great.
WhiteDove, how long did you have to wait before the interferon was out of your system enough for you to pass the blood tests? And how long had you been on the interferon prior to surgery?
Purple2067-I wouldn't worry too much of the port; my daughter got one put in when she was dx with Leukemia at age 2 1/2 and they didn't want to pump all the chemo through her arms due to the fear of collapsing her viens. The doctor put it in on the left side of her chest. The anesthesia was a good thing!
Thank you for posting the results of Tysabri...I'm new here and the posting have been helpful. I've been diagnosed with Benign MS, so I haven't had really bad symptoms. My neuro told me to call sometime in January to be put on Tysabri, but I've waiting for treatment symptoms...so far it sounds good...
I'm not really too nervous about the port. My surgeon has hands of gold. I trust him completely.
Filipinone, how old is your daughter now? Is she OK?
We decided to change the date of the procedure so that they could have enough time to do the pre-op testing, and I would have enough time to recover before going back to work. Now I will go for the pre-op testing on Feb 7, and the procedure on Feb 23, which is President's Week and I am off from work.
I tried calling the neurologist's office today to ask about the interferon causing a problem with the pre-op testing, but the head nurse was not in. I'll call back tomorrow and get an answer from her.
Thank you all for your concern and support. I am so glad I started this thread. I just can't wait to start the Tysabri!
filipinone, what were u'r signs that u were even dx? and what made them call it benign......... if you dont mind sharing...... brain lesions? spine lesions? are they waiting for u to have more symptoms to start tysabri?....... from what i read that benign ms is no longer in exsistance...........and resorts to mild or invisible............. hmmmmmmmmmmm just wondering also...... thanks for sharing..........
Purple----to answer to your questions: 1) after stopping interferon, it took 10 days to 2 weeks til all aspects of my blood returned sufficiently close to normal for surgery.
2) I had been g-r-a-d-u-a-l-l-y increasing Betaseron for ~10 months, then on full dose for only ~3 months. Since interferon is supposed to alter the immune system, I was told fewer blood cells (of all types, not just white) mean it's working as intended.
Also, I stopped fish oil, vitamin E and aspirin at the same time as Betaseron. My first blood tests were about a week later. That turned out not to be long enough, hence more blood testing. Then blood cell counts were OK but one other measurement (whose name I forget) was not. In a few more days all was acceptable for surgery.
To call MS "benign" strikes me as like calling a tsunami "benign" when it's out in the ocean and hasn't yet reached shore, where it will devastate all in its path. When I let myself see what has happened to what used to be me, I feel only terror and sorrow. MS is fierce. Are you this afraid, too? .....Should such a question be a new thread?