new to MS...what works best?

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Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 6/16/2006 9:26 PM (GMT -7)   
Hello all,
 
I usually stick to Fibro board, but I was dx'd today with a mild case of MS, and I'm not quite sure how to handle it.  I have another appointment on tuesday to talk about injections to control the progression, but I'm not sure which one would be best for me. Here come the questions:
 
What meds do you use?  How bad are the side-effects? And  does it hurt when you jab the needle in?  I am deathly afraid of needles...the last time I looked at one coming at me for my arm..I passed out.  Is it hard to use the  suringes (sp?)? 
 
Any help or advice you can give me would be greatly, and wholeheartedly appreciated.
 
Love,
 
Heather

Sandy C.
Regular Member


Date Joined Feb 2006
Total Posts : 129
   Posted 6/16/2006 10:57 PM (GMT -7)   
Welcome Heather.

I am sorry to hear about your recent diagnosis. There are wonderful resources on this forum to look through and read more about MS. I have taken Betaseron (an interferon) in the past for about 6 months, but stopped because the side effect of fatigue (which is my primary day to day symptom with MS to begin with) is somehting I didnt' want to deal with. I currently take Copaxone, which has few side effects such as fatigue. However I do seem to be a rare case with significant pain on injection, but it is starting to become more tolerable. I have never taken Avonex or Rebif. Most if not all companies provide an auto injector of some sort and the needle poke itself is really NOT painful. The needles are sharp, which is good. THe anxiety behind the poke is what can "cause" the pain in most cases. Is there someone that can help you with injections? That seems to help a lot.

Any of the meds out there are not a cure. At best, they all show approx 30% reduction of lesions as seen on MRI. They think the less lesions on the brain the less disability. However there are cases where just one or even no lesions cases significant disability. In my case they stopped counting at 30 and I am still working 13 hour shifts. I choose to take the medications, with their high cost and discomfort, because I don't want to say I didn't try. It is a choice that you have to make. They also say starting early is better...

Good luck to you! There are a lot of wonderful people here to provide feedback or even just a sounding board!
Sandy C.
Diagnosed with Multiple Sclerosis September 2003 currently taking Copaxone.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 6/17/2006 3:26 AM (GMT -7)   

I'm sorry you've gotten the diagnosis.  Is there any chance that instead of also having fibro, that the symptoms you've been experiencing all along are related to your having MS? It certainly would be easier to have to manage just one disease, than two.

At any rate, many of us here are on one or the other of the drugs now being prescribed for MS.  Sandy described it pretty well: since MS is a progressive disease, and since any flare or exacerbation or progression (not all progression is apparent through experiencing a flare!) can lead to increased disability,

I do whatever I can, to slow the course of the disease. I've had MS for nearly 24 years, now. I've been on Betaseron for the last 12 (it only came on the market about 15 years ago).

Sure, sticking yourself with a needle is never comfortable.  There are lots of folks who will help you learn how to do it, and over time, it becomes routine.  The side effects of the interferon-based medicines (Rebif, Avonex, Betaseron) can be unpleasant, but are manageable. Copaxone has some side effects, too, but again, they're manageable.

The GOOD news is that there is a choice!  You can start with one, and if it really becomes too difficult, you can switch to another.  You can study the materials and decide whether you want to deal with one injection a week, or every other day, or daily, how the different requirements of the meds might fit into your lifestyle (some require refrigeration, others don't), whether you'll need assistance to inject (and how comfortable your helper will be with the various kinds of injections -- muscular, or under the skin).

And again...if one doesn't seem comfortable for you, there's a choice.  Not that many years ago, there was no viable treatment for MS at all.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 6/17/2006 8:52 AM (GMT -7)   
Hi Heather,

Welcome to the MS board :-) So sorry to hear that you now have MS, did they say you have fibro too or was it MS all along? Fibro can mimic a lot of MS symptoms although it is possible to have both. There are a lot of resources here if you want to learn more about it and the National MS society website (www.nmss.org) is also a reliable source of information too.

There are currently four injection therapies available and you'll often see them referred to as crabs (Copaxone, Rebif, Avonex, and Betaseron). The last three are interferons and typically have side effects similar to that of the flu. The upside to these are that over time, for most people, the side effects lessen and the injections are 3x a week (Rebif and Betaseron) and once a week for Avonex. Copaxone is an everyday injection but the side effects are typically less severe than the interferons. Everyone responds differently though and if for whatever reason you need to switch it is an option to do so.

My husband has the same reaction to needles as you do but he chose to take Copaxone even though it is an everyday injection. He's been taking it over 5 years now and really hasn't had any side effects other than chest pain on a few occasions. It does sting a little going in and there is some mild irritation at the injection site but that goes away relatively quickly. There is an autoinjector you can use that hides the needle and all you do is push a button to inject. Most people find this way of injecting much easier.

Best of luck to you Heather! There are a lot of wonderful people here on this board. If you have any futher questions or just need to vent we will be more than happy to help and listen. Please let us know how you are doing.

Kimber
 
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my5cats
Regular Member


Date Joined Dec 2005
Total Posts : 67
   Posted 6/18/2006 10:53 AM (GMT -7)   

I think I am probably one of a very few people who post on this site who takes Avonex.  I love the fact that it is once a week.  At first, in December, I felt lousy after taking it, now I feel really pretty good.  It is mild enough that I am not really able to distinguish it from the general symptoms I always have with MS.  I will say that it is a long needle.  I weighed that against the more than once a week meds and went with the one that was less frequent.  I am very happy with the Avonex thus far.  I ice my thigh for 10 - 15 minutes before I do the injection and I don't even feel the needle.  I take Advil and a Xanax 1/2 an hour before I give the injection and I get through it just fine.  I can now do it early in the afternoon and still feel up to going out for the evening.  It does make you feel empowered to be doing something to combat the disease.  30% is pretty good odds in my book.  I've gambled plenty when the odds were a lot worse than that!

It's a really hard choice and most doctors have a preference of meds.  There is a ton of info here and on other websites on the medication choices.  Just read up and know that you can always change if it doesn't work out for you with the first one you choose.

Good luck and lots of prayers!

Gayle


Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 6/20/2006 11:27 AM (GMT -7)   

Hey all,

Now I am just getting frustrated.  When I saw the doctor Friday, he told me to come tuesday and we will discuss the meds and what I should be taking.  I go in today and he tells me that he has decided that HE isn't ready to treat the MS.  He tells me today that he is 85% sure I have MS, but he won't do anything until he is 95% sure I have it.

I told my husband that I am seriously considering ignoring all of it and not go back to any doctor, but if I did that, he would probably get really mad at me and then I would never hear the end of it.  I just want to scream and cry and throw things until I start feeling  better, but I know it won't help.  I am hoping the little vent does the trick, but as of yet it hasn't.  Did any of you have trouble getting a doctor to treat your MS?

Love,

Heather

 


Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, possible reynards, and Mild MS.
 
meds.:  not sure yet...changing them now


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 6/20/2006 12:58 PM (GMT -7)   
Wednesday p.m.
 
Good afternoon, everyone:
 
As I do not take any of the current MS drugs, I guess I should keep my mouth shut, but....
 
I was dx'ed in 1987...and there was NO medicines back then.
 
I can certainly understand everyones aversion to needles, but...
 
If you are a diabetic, you what, shoot up every/twice a day?
 
You'll get over it.  John

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 6/20/2006 4:54 PM (GMT -7)   
Hi Heather,

Sounds confusing! Seems kind of strange at one appointment he gives you a dx and the next one he's not sure? If he's not sure he should have never given the dx in the first place, so sorry you have to go through that Heather. I would be asking some questions like what needs to happen to get to that 95%. It can take some time in some cases to get the official dx and they don't usually start treatments until that stage happens. Try to hang in there and don't give up, we'll be here for you if you need us.

Kimber
 
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