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Old 09-15-2012, 02:45 AM   #1
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appt with ms clinic

so finally got my appointment with MS clinic and now that has made all this seem real. It is easy to "pretend" everything is the same . so now I start my next leg of this journey.....I know that it is an information session in order to go over the different drug options in order for me to choose which is best for me but can anyone tell me anything else about this information centre? Am starting to go into panic mode how long passes between choising the drug of choice and starting treatment? and how much would I be going to this clinic? thanks for your answers

 
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Old 09-15-2012, 05:20 AM   #2
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Re: appt with ms clinic

Hi, I do not know if things are diffferent in Canada, maybe some one else can confirm this- but in any MS clinic I have ever seen or any patient in the US I have ever spoken to- going over the drug options never takes place.

Seems to me that doctors will throw you some brochures on the available drugs and tell you to read them and call them when you have made a decision. In the US, the office then usually gets the approval for the drug (based on US insurance) and the next thing you know, you are recieving a call at home from the drug company telling you that they are placing the order for home delivery. In the US, syringes come by mail from a specialty pharmacy. Once the meds show up (3-7 days) a nurse comes out to teach you injection techniques. I do realize that the drug choices and insurance probably make this slightly different in Canada; but IM not sure how different it is.

A MS Specialist is there to both dx or rule out MS. They know every single symptom which points towards MS, know when it may be caused by something other than MS and its their job to be sure that you actually have MS. In assuming from your post that you have already been dx with MS? If so, than the next stop is obvious, to get YOU to decide what drug you want to be on.

Yes, the doctor may suggest one or two of them to you, but ultimately its up to you to decide which one you want to do. Keep in mind, that Betaseron, Avonex and Rebif are all interferons, with pretty much the same side effects- they are administered differently. Copaxone is Glatimir Acetate, lots less side effects as far as flu like symptoms, but the largest complaints of injection site reactions and has to be done daily. Things like Novantrone and Tysabri are not ususally offered until you have tried the other drugs first. These are infusions done at the Hospital, everything else is self administered at home.

You will probably have a nurse from whatever company you choose stay in touch with you during the fist quarter and then return to see your doctor after 3-6 months- OR sooner, if you have any complaints. Remember, NONE of the MS drugs really start to work until you have been on them for 6 months. Its quite possible that month 2 or month 4 you could have a relapse and need to see your doctor anyway. You always want to report any unusual side effects from the drugs to your doctor immediately as not everyone can tolerate all of the drugs.

How often you return to the clinic is up to you...usually MRIs are repeated once a year - if you dont have any problems in betweeen. I go and get mine doen every 6 months because I have a significant amount of lesions (over 100)- and they watch me carefully. I see my Neuro about every 3 months; however I only see the MS Specialist once a year (less if I can help it). In my neck of the woods, my regular Neuro is my primary doctor, and my MS specaialist is not a nice person, I simply keep in touch in case I have to utilize the MS clinic at his hospital- I want to remain on the patient list.

Try to breathe through all this, its overwhelming, but nothing is going to happen to you that you dont allow to happen. Start reading about the different drugs NOW. Get informed. For instance, Betaseron is every other day, subcutaneous injection. Avonex is once a week, sub muscular injection- Rebif is 3 times a week, sub cutaneous. Rebif and Avonex are identical drugs, given differently...Rebif is the stronger because it is given more often.

Copaxone is daily..subcutaneous.

The first three have flu like side effects, which not everyone gets, and they only happen on shot nights, and go away within a few hours. Most people sleep thru them. Copaxone has a high incidence of injection site reactions and you need to have enough subcutaneous fat on your body to support 7 day a week shots. I couldnt do it. I weigh 110 lbs and am 5'4'' tall. Im very tiny. The decision to start a med is very personal and not everyone wil have the same reactions to them.

Remember, someone here is on whatever you are leaning towards, so shout out and ask about experiences....ok?

Hugs and luck to you!
Nikki
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Old 09-15-2012, 06:22 AM   #3
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Re: appt with ms clinic

I too have no experience in Canada except for business and travel!

I go to an MS Clinic every 6 months because that is where my neuro works. In the clinic where I go there are always MS and ALS patients and those who are in limbo. There is also a plethora of information on various meds and trial participations.

If you go the med route, I would speak to the nurse at the clinic as well as the contact line at the various DMD pharmaceutical. You can also discuss this with your local MS Society.

Your journey is beginning and in a year you will be a full fledged veteran. It is good that you are out of limbo land and you are ready to get back to life!
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Old 10-03-2012, 12:37 PM   #4
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Re: appt with ms clinic

k had my appt on monday and made the choice of rebif.....pharmacy called today and said it would be here tomorrow ...so now I guess the next step is to hear from the drug company to show me how to administer this....so it begins......wish me luck cause the whole situation scares me silly...

 
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Old 10-03-2012, 12:45 PM   #5
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Re: appt with ms clinic

I do indeed wish you luck. I am sure you will do fine. Stay positive and count your daily blessings!
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Old 10-03-2012, 04:29 PM   #6
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Re: appt with ms clinic

Play4ever,
I was on Rebif for 6+ years and did really well on it. Youll hear horror stories of side effects and things that can happen- but if you follow proper injection techniques, which the nurse will show you- youll be fine. The side effects can happen, and usually do- but they dont start till month 2 because the drug is titrated, meaning you start with a lower dose and build up to full dosage...and it takes a month to get that far- at that point, you may have some lousy nights....but it passes! Youll only feel lousy for about 6-8 hours after the shot (many people sleep thru the worst of it) and you wont have any side effects on non-shot days.....and youll get past the side effects by month 3...so, figuring 12 shots a month- youll possibly have 24 bad nights over the course of 3-4 months- and thats it....it will all be over. Stick with it and hang in there...because it is worth it.

Now, with that being said, I eventually built up some antibodies to the drug and it started making me sick. The way to avoid this, is talk to them about running blood work after year 2 and make sure you arent developing anitbodies...usually it takes from 2-5 years if its going to happen and getting blood work every 6 months is a good idea. Not many people develope these antibodies..

Youll be fine. Think positively. The only way to get past this is to remember this IS YOU TAKING CONTROL OF YOUR DISEASE AND NOT ALLOWING THE DISEASE TO CONTROL YOU!
Ok??
Hugs,
Nikki
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