Well my neuro called after my follow up MRI from last week. (On 3T machine this time) Demyelinating lesions were found on my brain this time and he diagnosed me with MS.
Background info on me: previous mri on 1.5T in february showed a cervical lesion and brain was clear. And abnormal LP of elevated IgG index.
Anyway I guess I need to change my user name from PossibleMSclub to MSclubmember.
Neuro wants me to start on rebif immediately. He had already referred me to a ms specialist before my mri but my appt with that doc isn't until June 12th.
The nurse from my regular neuro's office is supposed to be calling me to get started but I've had trouble with communications with them before and I still haven't heard from her yet after 3 days.
So I have some questions about rebif:
Is this something that you get thru the mail from a special pharmacy type thing? or something special ordered thru your regular pharmacy?
Is the pricing of the medication pretty much the same at the different pharmacies? Where are the cheapest places to get it? (assuming the answer to my 1st question is that there are choices)
Anything anyone who is on rebif please chime in and let me know any helpful tips/advice/etc you may have.
Welcome ti the. Club no one wants to join. Typing on my phone so sorry about my errs. June is not that far off and you might consider waiting until you see the MS specialist so you can review all your drug choices.
Sorry youjoinus here but glad you got nswers. Be well. Lulu
I am glad to hear you have a confident neuro who knows what he's looking at. My doctor recommended Rebif as well, and it's serving me well. Your appt w/the specialist in coming months will serve as a 2nd opinion for you which will bring even more confidence that you are treating the right disease.
Rebif does come from a specialty pharmacy. Your neuro's office will send the script to that pharmacy (pharmacy depends on your insurance typically), and then you will be contacted in regards to co-pay, etc. I have a good plan, and pay $15 a month for mine.
Also, once the script is ordered you will be contacted by, or be asked to contact MSlifelines, the support. You will be assigned an MSlifelines nurse who will call you and set up a date for injection training - they are flexible, and work with you on time that is good for you. They will want you to have your med before they come, but contact prior to this is typical, and then a call back once med arrives via mail.
Pricing will depend on your presciption plan. I hope it's affordable to you.
If you call the neuro's office, just ask them if they sent in your script for meds. It does take a few days initially (well, should say that depends on how good the staff it, lol).
Ask anything, there are a few of us Rebif users on the forum - glad to help.
Shell is a good source for info on Rebif - now that I am home and on a regular keyboard perhaps my typing will make sense. The only point I was trying to make earlier is there are a lot of options and factors to weigh when considering a therapy. But you already know that from your time here reading from others' experiences.
Do you think you will go ahead and keep the MS Specialist appointment with this doctor making recommendations? If so, perhaps you can make a call and get in a bit sooner for the MS Doc? It never hurts to ask to be put on their cancellation list.
Again, sorry you have joined the club here but you are in excellent company.
I've been on Rebif for three weeks now, and have been doing great. Side effects are minimal, although I'm still working up to a full dose (takes about a month)
I'm not sure what kind of information I can offer you in terms of pharmacies and pricing, as it depends on your personal situation and where you live (I'm up in Canada) Here, any old pharmacy will just order it in for you. I guess it's too expensive and infrequently prescribed to keep on hand.
Great suggestion Lulu- I will call the specialist office tomorrow and ask to be put on the cancellation list.
And thanks shell and dianna for your comments as well.
After looking thru the various DMDs I really feel like Rebif is a good fit for me. I had wanted to wait to start treatment until after seeing the specialist but my current neuro strongly urged me to go ahead and start treatment based on my mri. He said that if the specialist wanted to stop the rebif and start something else that it would be fine but to go ahead and start it.
I intend on completely switching to the new doc if he seems like a good doctor after i see him for the first time. I haven't been very pleased with my current doc and his office/nurses so far.
I'm not sure if I should wait to start meds with the new doc or not, based on my current docs recommendation.
Then by all means, go with your doctors recommendation. A medical professionals assessment of your specified situation will always be heads and tails above any opinions or suggestions you'll find here, or anywhere else on the word wide web, provided you feel s/he's looking out for your best interest. That's not to say whatever advice or personal accounts and anecdotes you come across here aren't invaluable, only that a physician you see on a face to face basis takes precedence.
The reality is that YOUR MS is not MY MS, or anyone elses. Pardon the cliche, but I like to think of MS like snowflakes; no two are alike.
Of course, at the end of the day it's up to you, and to be honest, the urgency to begin treatment puzzles me a bit. As Lulu (and my MS doctor)
has said on a number of occasions, MS in most cases has a relativity slow rate of progression. I was told to "take my time" choosing a DMD. I don't see how a month or two would make much of a difference if you're more comfortable being treated by a specialist in this regard.
On the other hand, since you're diagnosed, I guess it couldn't hurt getting the show on the road. ( If not for any reason but to see how well you'll tolerate the medication. )
I would prefer to start with the new doc but also feel like what you said in your comment about getting the show on the road.
My husband also brought up a valid point as well. What if the new doc wants to start me on a clinical trial or something. The MS specialist is at a teaching hospital (vanderbilt university) and they are doing alot of research and clinical trials in MS currently. I wouldn't want to be excluded from something because of starting the rebif.
that thought about trials is really a good one for several reasons, including that the costs of the drugs and appts . is covered in the trial, so if insurance coverage is a question, this could be significant. I know there are many trials that want you to be treatment naive, meaning you have not had a MS drug before.
I am doing a tysabri study, and I had to be tysabri naive for the initial MRI, neuropsych exam and the neuro exam. It meant delaying my start of treatment almost a month until everyone's schedules could be coordinated for the appointments.
Good luck in deciding what is best for you and your situation.
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