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Buckeye
Regular Member


Date Joined Aug 2006
Total Posts : 68
   Posted 1/7/2007 8:36 PM (GMT -6)   

Hello Everyone! This is my first post on HealingWell.com.  It’s awesome to see so many supportive people.

Here is my quick story:

Dx June 05 ~Optic Neuritis Age 28 (now 30)

Pregnant August - May 06 (never felt better in my life even with the relentless vomiting for 9 months) Beautiful Baby BOY

Relapse June 06 dx through base like MRI Started Avonex - My body did not fair well on it.  I was laid up for days only to then inject right as I was coming out of it.  I've heard that it works wonders for some, so if you are on Avonex don't let my comments derail your treatment.  I was on it for nearly 6 months and called it a QoL issue.  My marriage was suffering, my new baby, depression etc. 

November 06 - weakness in hands and stiffness in wrists

December 06 - Follow up MRI ~ Relapsed Doctor said "If you want we can do IV therapy" (that is a whole other thread of discussion)

January 07 - Right and Left Leg didn't work right, tight joints and weakness

 

There are times when I do not think clearly.  Say things that do not make sense. Just cannot think off the top of my head and I can not tell you how long it took me to write this.

I am also on Provigil for fatigue.  What do you guys think of that? Does it work for you?  Sometimes it does while other times I still want a long nap. I try to do Yoga for flexibility but the cold air makes it had to accomplish.  Not to mention Logan (8 months) is way too active to watch Mamma do Yoga.

 

NOW here is my decision:  I don't want to take Copaxone, the Avonex injections have put the fear of God into me.  Doctors said that I definitely need to be on something and that they would be fine by putting me on Tysabri considering the amount of relapses I've had in the short amount of time and that I should "look in to it on the Nation MS to see if I want to go on it" (ya, another thread for another time of why my doctor does not want to take the time to explain things to me) My relapses are not always complete recoveries.  I would love to just go in and have an hour IV every month.  Too good to be true?

 

If you are on it, how is it going? How do you feel? What do you like and what do you not like? Just give me the run down.

What have you heard that is good and what is bad.  I’ve read about the PML… and also heard that sense its been back on the market (6 months) that nobody has had any brain diseases but its too short of time to really know for sure.

 

So what do you all think?  I don't even know if I am asking the right questions.

1. Tysabri?

2. New doctor?  I don't like that she puts the decisions on my like I've been to med school. It’s so frustrating to talk to her. Some things she will treat while other things she will not even though they are so similar.  I am so confused. I can’t even go there about her right now.

 

Anyway I am thankful if you have gotten this far in reading my post.  Any advice will be greatly appreciated and hopefully once I know and learn more I will be able to return the favor to someone.

Thank you and have a wonderful evening.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/8/2007 7:48 AM (GMT -6)   

These are some random thoughts, not necessarily in any order of importance:

Why don't you want to try the Copaxone?  Unlike Avonex, Betaseron and Rebif, Copaxone is NOT an interferon, and many people use it without any side effects.  Yes, it is a daily injection, but once you learn how to do that, it doesn't seem to be much of an issue.  The main side effect -- a shortness of breath about 15 minutes after the injection -- doesn't seem to happen to every one, and certainly not every time.

If I were in your situation -- scared of the interferons (Avonex) and faced with Tysabri  -- I'd certainly try Copaxone, first.  The Tysabri does show promise in some folks, but after the brain disease episodes, I'd be putting that as a "last resort".

I can't speak about the IV therapy. That is a "new treatment" to me. I've had MS for a very long time, have been on Betaseron for the last 13 years or so, and am doing OK with it, so haven't explored the IV. But I don't think it's as simple as: "Do the treatment once a month (or whatever the cycle is), and you're fine."  My experience with MS is what you describe: have an exacerbation; recover from some of them, but have residual symptoms that remain between them -- the most common being fatigue, weakness in limbs (for me it was the legs, primarily), numbness, tingling.

As for your doctor: I'd hate to be a doctor these days.  Seems like patients come with two schools of thought: 1) Tell me, doctor, what you want me to do, and I'll do it.  or 2) DON'T tell me what to do! I've done research on the internet and here's what I want to do. Support me!

It sounds like your doctor is trying for a middle ground: "Here's what I recommend, but you should do some reading and research and if you're comfortable with that, let's do it."  You've had a bad experience with Avonex, and apparently told her you don't want to do Copaxone, so she's giving you the alternatives, and saying, "OK, then, which of these would you want to try?"

Some symptoms are treatable, some aren't. Not all patients respond well to the same treatment used on other patients. Often it is a trial-and-error -- if one med doesn't work, you'd be telling your doctor, and ask if there are alternatives.  I don't use Provigil, so can't speak specifically about that, but know that not all the meds used to treat fatigue work well for everyone. Same for bladder control meds (Ditropan, Detrol), and some of the others.
 
You say "some things she will treat while others she will not, even though they are so similar". Can you be more specific about that?  What YOU might think are "similar symptoms" may in fact NOT be similar, and might not respond in the same way.
 
Finally, not all symptoms are treatable all the time. Sometimes a med will work one time, and not work again, even though the symptom seems the same.  MS is a very unpredictable disease, and responds inconsistently to treatment.  A hard reality, but there it is.
 
Congratulations on your baby.  8 months old, huh?  He'll be a reall challenge soon, when he starts walking around and tearin' up the joint! :)
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/8/2007 10:01 AM (GMT -6)   

Hey Buckeye!

Welcome to the board! I hope u'll find this as great a place as we all have and will feel u can ask any questions u'd like.

Uppitycats did a great job answering and responding to u'r questions. I could only add that i agree on the Copaxone trial. Many here are using Copaxone and doing well with it. As well, i'd suggest u hang onto u'r doc at least for now. It sounds like she's suggesting appropriate care for u. If u continue to feel u'r not being treated properly, then by all means try someone new, but at least let her try to work out the CRAB's sitution for u and see some success with her. I think these questions u'r asking can be solved by following her direction. I imagine there's possibly more to the history with her than u were able to tell us here, but from what u said it sounds like she's trying. Yes, they (the docs) do put a lot of decisions on the patient...expecting us to understand and be able to make those decisions. I think in this day and time they've become accustomed to us being research bugs and just expect that of us. In my very first neuro appt my own neuro told me about some different types of mirgraines and said 'u can look this up on the internet and see the differences', meaning, they expect us to follow up.It's almost like second nature with most folks now and i suppose that's why it's assumed by them. That said, no it doesn't seem right that u may need to do u'r homework on this u'rself, but if not u, who?? U are the only one who can be in control of u'r care...shouldn't u know?

I'm so glad u found this site and hope u'll ask lots of questions and feel comfortable with us all. This is a great site with wonderful people who all understand u'r situation. We'll all be more than happy to help as much as we can. Welcome again!

rhonda

 

 

 


Buckeye
Regular Member


Date Joined Aug 2006
Total Posts : 68
   Posted 1/8/2007 11:26 AM (GMT -6)   
Thanks Rhonda and Cats, Your honesty is refreshing. Ok here is the bottom line. This sucks, I just want it to go away. I don't want a daily reminder that I have a disease. I don't want to inject myself. I want a simple solution without the injections.
I want the impossible. I want to know what is going to happen to me.

I know the interferon was not right for me. The side effects were more than I could bear. The actual IM injection has now made me phobic of doing injections all together. The smell of the acholol prep makes my stomach turn.

Out of my doctor, and your right I didn't go into it all, but I would at least like to look over the MRI's with me so that I better understand my condition and where I am at. Not to sound snotty but its what we pay her to do. I don't want a call just say that I've relapsed. It’s not fair. I want to know more. I do a lot of research on line and that is where I need clarification and help separating the BS from the facts. I am scared and I cannot do this on my own.

However you are both right, I need to look into more and at least try the Copaxone. The Tysabri just sounds so easy, but as I’ve said…once a month, how tempting is that!!!!

Did either of you start Avonex then switch to Copaxone? Is there a big difference on the pain scale for the injections? I know that one is an IM and the other is not but I am just curious if there is an actual difference.

Thanks again for your responses. This is a great site I plan to look for support and reference.
Thanks

Dana

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/8/2007 1:12 PM (GMT -6)   
Hey Dana!

Good to see u again! I can totally understand u'r position on the doc situation. Yes, i'd want more than a quick response answer. I want to totally understand my situation and so does everyone else. The quick and honest answer is this...u ask the doc these questions...u don't give up til u get an answer that u can understand. If u dont' understand u ask again explaining that u need clarification. Yes, we pay them for this...why shouldn't u be able to take time up in their office to get the answers u need? On the other hand...the research u'r doing is invaluable to U. U alone can make such a difference in u'r own understanding of all this. When i began searching for answers i didn't know what to do or where to turn. Before i even saw the doc i had a suspicion of ms because of the symptoms i had. I went in that office with much more info than he realized i had. Everything he told me i went back to the computer and backed up with research. No, i didn't understand fully. Not until i found a site...this one...where i could get first hand info on how the symptoms felt and acted to other people. Not til i looked for more than a clinical answer to the questions i had. If u want to see the mri's and understand them then ask for that. I didn't understand my own mri's either, but found people here and elsewhere who did know and told me. I guess i'm saying that even tho u have a doc u'r paying and u should be able to understand everything, doesn't mean u always will. What u don't understand, make a point to find an understanding here or in that doc's office, but don't wait to be told.

U asked if i was using Avonex. No, i'm not dx'd. There's the difference between u and me. I don't know and would love to...just to be able to move on. I could then lay a plan out and persue that plan. As it is, i have these lingering symptoms that have no answers. I think ms stinks too! I'm so sorry u've been dx'd, but so glad u have answers and can deal with this. I wish u could just snap u'r fingers and make it go away for us all, but the truth is that's not possible. The life of an ms patient oftentimes includes injections and other varied drugs to make the days work, but the days do work. U can't predict what u'r future will bring. No one knows the path ms will lead them down until they get to that part of their life's map, but for sure taking every step to prevent or lessen the severity of the disease is worthwhile. The injections aren't preferrable to the life u prob had before u'r dx, but much preferrable to a life with ms and without the injections. To answer u'r question, I know someone who was on Avonex and then switched to Copaxone and has done wonderfully. I hope u'll do just as well and will be able to adjust to life with these changes. For sure they're big changes, but not something u can't overcome. ;)

rhonda

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/8/2007 1:52 PM (GMT -6)   
Buckeye said...
Thanks Rhonda and Cats, Your honesty is refreshing. Ok here is the bottom line. This sucks, I just want it to go away. I don't want a daily reminder that I have a disease. I don't want to inject myself. I want a simple solution without the injections.
I want the impossible. I want to know what is going to happen to me.
 
Well of course it sucks. None of us want it. None of us want ANY sort of reminder that we have a disease.  But we do.  And so long as you have MS, you're NOT going to know what will happen to you.  A harsh reality, but there it is.  MS is unpredictable.  What happens to me may not necessarily happen to you (and frankly, I surely HOPE it doesn't happen to you like it hit me!) Every patient is different and every person's experience with MS is different.

I know the interferon was not right for me. The side effects were more than I could bear. The actual IM injection has now made me phobic of doing injections all together. The smell of the acholol prep makes my stomach turn.
 
Of course injecting ourselves, or having to submit to an IV is never pleasant.  But it's a reality of having a chronic illness.  I think about my friend with diabetes, who injects herself *several times a day*, has to monitor her blood sugars, pay attention to a LOT more than I have to, with a once-every-other-day stick in my stomach (where I inject the Betaseron). By the way, I found the alcohol wipe was very irritating to my skin, and after consulting several times with different nurses (to get different opinions), I now just make sure my hands are washed, the area where I'm going to inject is washed, my cats are out of the way (there's still fur everywhere; a problem with 4 of them!) and do it.  And give the alcohol swaps to my diabetic friend.

Out of my doctor, and your right I didn't go into it all, but I would at least like to look over the MRI's with me so that I better understand my condition and where I am at. Not to sound snotty but its what we pay her to do. I don't want a call just say that I've relapsed. It’s not fair. I want to know more. I do a lot of research on line and that is where I need clarification and help separating the BS from the facts. I am scared and I cannot do this on my own.
 
You're right, having a chronic illness is NOT fair.  As for "looking over the MRI's" with you: they are extremely difficult to "read".  Very often two trained doctors, looking at the SAME MRI, will come up with two different conclusions as to what might be going on.  I've seen my MRI. Unless the doctor is sitting there over my shoulder and pointing to a specific spot, I have no clue about what I'm seeing....and even after it's pointed out, it doesn't look all THAT different from any other area.  And whether you have just a few lesions or a lot doesn't matter anyway -- it's the location of lesions (or plaques), not the quantity, that can indicate whether you're likely to suffer disability or not.  So there's not really much to gain by learning how to read an MRI, from the patients perspective, anyway.
about all the doctor CAN tell you is that indeed you're having another relapse. SHE doesn't know what the course of your disease is, either.  It's not like she's trying to hide anything from you. Again, it's the nature of the beast -- unpredictable, different from patient to patient, doing the same treatment with patient A and patient B will come up with different results, etc.

However you are both right, I need to look into more and at least try the Copaxone. The Tysabri just sounds so easy, but as I’ve said…once a month, how tempting is that!!!!

Did either of you start Avonex then switch to Copaxone? Is there a big difference on the pain scale for the injections? I know that one is an IM and the other is not but I am just curious if there is an actual difference.
 
I think there is a BIG difference between the intra-muscular injection (Avonex) and the just-under-the-skin injection (Copaxone, Betaseron, Rebif).  I use the same sized needles that my friend-with-diabetes uses for my Betaseron (we'll often give each other needles if one or the other has forgotten them when we're visiting).  A sting, and that's that. 

Thanks again for your responses. This is a great site I plan to look for support and reference.
Thanks

Dana

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


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 1/9/2007 12:17 PM (GMT -6)   
Tuesday noon
 
Greetings, Buckeye:
 
I used to take Betaseron a bunch of years ago, and could never get over side-effects.
 
And the other MS drugs, at least I know Copaxone, is a sub-cutaneous injection (just under he skin), nowhere near as tough as Avonex injection.
 
Great luck.  It is somewhat common knowledge that the sooner you get on a MS therapy, the better for you.
 
That little baby sure needs you!!!
 
And the little girl is THE cutest baby of ALL time, right?
 
John

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 1/9/2007 6:04 PM (GMT -6)   
Hi Dana,
 
   I see you've been very well welcomed by our little family!  I understand where you're coming from, but I hope you will at least look into Copaxone further.  My husband has been on it for years and no he never tried the interferons, mainly because he didnt want to deal with all the symptoms of MS and side effects too.  Everyone is different though, that was just his choice at the time :-)
 
   No one wants to do daily injections, but after a while it really just becomes part of your daily routine and there is even a nice autoinjector that you can get where all you do is push a button!  Good luck with your decision, and please feel free to post anytime.
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 1/9/2007 6:38 PM (GMT -6)   
Welcome buckeye!
 
I wanted to stick my 2 cents worth in.  I was on Rebif which is sub-q and an interferon and let me tell you....that injection was very painful and the site reactions were horrid.  The Avonex injection (as you know) isn't real painful but it is scary, (that is what I'm currently on).  I've heard from several that take copaxone that it just stings a bit, the med doesn't hurt going in like the rebif.  Like uppity, why don't you at least try the copaxone, maybe you'll like it.  You can always switch and if in a year you want to try the tysabri then maybe that will be a good time.  I am hoping to go on it in a year or two.
 
Take care, enjoy the little one! :-)
Michelle ><>
 
The choices you make today will determine your tomorrow.


Buckeye
Regular Member


Date Joined Aug 2006
Total Posts : 68
   Posted 1/11/2007 8:31 PM (GMT -6)   
Thanks everyone. I am starting to come around to the possiblility of trying the Copaxone. My husband and I watched the DVD last night. Yes I cried. Its really the first time that I actually had to face up to what is happening. Right after I was dx I got pregnant as planned and therefore didn't really even have to think about MS. I was so focused for 9 months on my baby.
The thing about Avonex is that the injections seemed to get worse for me. I'm thin and lean/muscular so there were times that the needle hit close to bone. You really had to place it right otherwise it was very painful. Anyway week by week the injection its self got worse and the side effects did not go away or lessen at all and would last for days.
So here I am. 1.5 years dx and 4 relapses.

I don't know how to get over this shock of "I have MS, I now hate needles, I just want to be normal" thing I have going on. It just seems like the other day I was climbing around in the Grand Canyon. I feel like I'm at a stand still and broken. Probably why I don't want the daily reminder. I just don't want it in my face everyday. But most of all I feel broken.
Just reading through the Copaxone info I start crying. When does this stop?

My husband is scared for me to try Tysabri so I am leaning toward Copaxone. As far as the auto inject. I am going to jump out of the chair when it happens? Do you do your injections yourself? Which area is the most tollerant and what is your least so I know where to start.

Thank you again for your support. It really means a lot to me right now.

Dana

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/11/2007 8:52 PM (GMT -6)   
Hey Dana

I'm glad u'r starting to get a handle on this new situation. Yes, i see u'r 1.5 yrs into this, but only just starting to face it. I'm glad u did take the time to really just focus on the baby and enjoy him. U needed and deserved that. While everything seems to be spinning and u feel out of control, remember that this all will settle down for u very soon as u get adjusted to the knowledge that u do have ms and u'r active life really will go on. Maybe u'll have to make adjustments, but u have to make adjustments all thru u'r life and make life fit u...well this is just another 'fitting' and u'll make it.

I didn't say it earlier, but congratulations on a sweet baby boy! What a wonderful gift he is! Enjoy him and try not to focus on the way u'r life may have changed, but rather on how u'r gonna make it and be that great mom and wife and Dana that u've always been.
rhonda
Co-Moderator, MS Forum


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/12/2007 1:32 PM (GMT -6)   
Buckeye said...
Thanks everyone. I am starting to come around to the possiblility of trying the Copaxone. My husband and I watched the DVD last night. Yes I cried. Its really the first time that I actually had to face up to what is happening. Right after I was dx I got pregnant as planned and therefore didn't really even have to think about MS. I was so focused for 9 months on my baby.
The thing about Avonex is that the injections seemed to get worse for me. I'm thin and lean/muscular so there were times that the needle hit close to bone. You really had to place it right otherwise it was very painful. Anyway week by week the injection its self got worse and the side effects did not go away or lessen at all and would last for days.
So here I am. 1.5 years dx and 4 relapses.

I don't know how to get over this shock of "I have MS, I now hate needles, I just want to be normal" thing I have going on. It just seems like the other day I was climbing around in the Grand Canyon. I feel like I'm at a stand still and broken. Probably why I don't want the daily reminder. I just don't want it in my face everyday. But most of all I feel broken.
Just reading through the Copaxone info I start crying. When does this stop?

My husband is scared for me to try Tysabri so I am leaning toward Copaxone. As far as the auto inject. I am going to jump out of the chair when it happens? Do you do your injections yourself? Which area is the most tollerant and what is your least so I know where to start.

Thank you again for your support. It really means a lot to me right now.

Dana
One and a half years diagnosed and 4 relapses? You really do need to at least try one of the disease-modifying drugs.  I can appreciate your concern about the Avonex -- that is a very large needle. The others aren't so long and scary, I don't think, and indeed the Copaxone seems to have the fewest side effects.
 
If indeed you are crying at small provocations (like reading the Copaxone literature), you might want to talk with your doctor about some antidepressants for awhile. You had a baby (which messed up your hormones), you were one one of the interferons (which have "depression" as a side effect); you're hit with this diagnosis of a chronic health situation...no wonder you are upset and anxious!  They might settle you enough that you'll be able to look ahead long term and realize that you're not doing yourself or your husband or baby much good by not doing what you can to slow the progression of the disease...which is to inject one of the medicines available.
 
Just because you have MS, you know, doesn't mean you have to stop all the things you love! You might just have to think about doing them differently, or pacing yourself more.  Like climbing around in the Grand Canyon.  Unless you start to have serious balance issues, there's no reason why you can't travel and do at least some of that stuff again.  Even in a wheelchair, I've been to the Philippines, throughought Canada, to Alaska twice (and planning a third trip next year!), California...lots of places.  And sometimes by myself, in my own car, driving myself. And it doesn't sound like you're all that impaired that you can't do at least some of those things that you love, with some care.
 
The MS fatigue is a challenge.  Some of the drugs work well for some people, but not always. You might have to switch around and find another that is better for you.  You have to realize that you're taking care of a pretty active little guy, too -- tiring for any woman, and compounding that with your health situation, it might be that you and the baby need a nap every day!
 
As I said...none of us like to stick ourselves daily...or even monthly. But I know all-too-well how devastating this disease can be.  When I was diagnosed there were NO meds available...and I suffered for it, with lasting and permanent disability.  I don't wish that on anyone!  If any of these drugs were available when I was first diagnosed, I would have jumped at the chance to get on one of them, and do what I could to keep healthy.  I hope you will do the same.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/13/2007 10:00 AM (GMT -6)   
Hello Buckeye..a little off the topic but could you tell me your experience with Optic Neuritis..your symptoms? Im afraid I might eventually get it and I was just wondering if there were beginning signs/symptoms that lasts a long time before it finally manifesting. Thanks

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/13/2007 12:54 PM (GMT -6)   
Neurogurl said...
Hello Buckeye..a little off the topic but could you tell me your experience with Optic Neuritis..your symptoms? Im afraid I might eventually get it and I was just wondering if there were beginning signs/symptoms that lasts a long time before it finally manifesting. Thanks
Here is a website -- the National MS Society website -- that describes optic neuritis:
 
 
It usually comes on suddenly, then resolves over time.  While often painful, it isn't always so. And an opthamologist can see the inflammed optic nerve, and after it is resolved (gone), the optic nerve remains pale, especially when seen in contrast with the nerve in the other eye.  It's rare that both eyes have optic neuritis at the same time.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Buckeye
Regular Member


Date Joined Aug 2006
Total Posts : 68
   Posted 1/13/2007 2:51 PM (GMT -6)   

While I am sure Optic Neuritis is different for everyone there are some common threads as Uppitycats mentioned

However in my experience I had blood shot eyes initially for at least a week or two.  Then one day, after a hot shower, I was putting makeup on my eye.  I closed one to apply on the other and I could not see my eye. After a while it became slightly painful, like pain would be with a sinus infection around your eyes, when my body temp increased and my sight was wavy, gray, kind of like looking through foggy glass.  Also when watching TV my optic nerve could not keep up with the movement and when I read I could see the individual words but I had to read slowly so that my eye could focus enough to see.  Does that make sense?

When Optic Neuritis happened to me I lost vision in different areas of my eye which was determined in a field vision test.  There were several places in my eye that were blind so when you see a line of letters like

 

A  B  C  D  I may not see the B but I saw the other letters.  

My eyes now get a little hazy when tired or too hot and very little pain if any at all.  Hope that helps.  Best of luck to you.  Why do you think you might get this?

 

Buckeye
Regular Member


Date Joined Aug 2006
Total Posts : 68
   Posted 1/13/2007 3:29 PM (GMT -6)   
To those who have and are still helping me with this thank you again. I think you will be happy to know that I have sent my forms in for Copaxone. I think that if I see this drug as hope and "as good as it gets" then I am satisfied with making the small sacrific for my family. Uppitycats I am most inpired by your travels and your acheivements, MS aside! That is wonderful all of the things you have done. And you were right, there are meds. pick one because I am fortunate enought to have them. I was feeling sorry for myself, I guess it happens to the best of us.

Do you think that the Solumedrol and the Prenozone tapper make you more emtional? I did have post partum with my son but i've been off anti-depressants for over a month. I was doing fine until the IV therapy.
Had anyone experienced this?

PS I've attached in my bio or somewhere (if I did it right) a picture of my son, my inspiration for many things. Hey let me know if I did it right.
He is so active and strong...and yes of course I think he is the best looking baby ever. LOL

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 1/13/2007 4:40 PM (GMT -6)   
Hi Dana,
 
    Thats wonderful to hear, and I wish you the best of luck.  It's great that you are trying to see things from a different perspective. 
 
    I have to take Prednisone sometimes for another illness, and it does make me very emotional.  I cry one minute, happy the next..for me its like PMS x 10 redface   For me it goes away soon after I quit taking them, are you still on the taper? 
 
    Majority of people do the injections themselves.  The autoinjector does make a pop sound when you push the button, but I don't think it's a scary sound to make you want to jump out of your chair.  Its injected just under the skin with eight locations that you rotate daily.  Most people find the arms the easiest spot, and some women like the hip spot best.  It is refrigerated, and you might experience a stinging sensation when injecting.  I've found that if I take it out of the refrigerator about 10 to 15 minutes prior to injecting it reduces the sting. 
 
    I wasn't able to open the page you provided for your son sad It might just be my connection though, I'll keep trying! 
 
Co-moderator for Multiple Sclerosis
 
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uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/13/2007 5:14 PM (GMT -6)   
Yes, the prednisone for sure can affect your emotions. I don't know about the solumedrol. I'm very happy to learn you're going ahead with the Copaxone. As Kimber said, most of us have learned to inject ourselves. I personally don't like the autoinjector (Betaseron has one, too). I think you'll learn how to do it either way (autoinjector and without), and over time will settle on the way that works best for you. I inject mainly in my belly. I don't know if that's a spot available with the Copaxone. I found the arms a challenge to reach myself.

Anyway, I'm sure that when you get the meds, folks here will be glad to walk you through your first injections. Good luck!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 1/13/2007 6:07 PM (GMT -6)   
Uppitycats...thanks again and thanks buckeye!!!!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 1/13/2007 10:29 PM (GMT -6)   
Hey Dana,

I have been on copaxone for a few months. I was scared about the injections. After the very first injection you will absolutely feel like a pro. It is that easy. It is a no brainer. The needle is very sharp and quite short. I usually don't feel the needle at all, and I mean I don't feel - its not that it doesn't hurt, you don't feel it! I was delightfully surprised! You may feel a sting afterward. This starts about 5 minutes after I inject. Make sure your drug as come to room temperature. If it goes in cold, it stings more. It stings for about 5-10 minutes. I know you don't want to remind yourself of your disease each and everyday but think of it this way - everyday you get to do something that will fight this disease. Become the warrior and fight for your life!!!!!! It helps me a lot to think if my injections that way. Good luck and let us know when you have done your first injection so we can all cheer for you :)

Gretchen

malachy72
Regular Member


Date Joined Oct 2005
Total Posts : 99
   Posted 1/23/2007 5:11 PM (GMT -6)   
I'm going to jump in here. I've posted on the Ulcerative Colitis board as I'm a UC survivor (cured with a total colectomy and j-pouch surgery).
 
The missus has MS. She was diagnosed in 1991 and is on double dose of Betaseron. She injects 2 of three days as she doesn't like to do it every day..
 
We are going to seek Tysabri as an altenative. Her neuro was going to try this 2 yeras ago when the drug was pulled. What I've been able to ascertain is that there were 3 cases of PML with Tysabri. It doesn't look like at least 2 of the patients even had MS. Tysabri was also used in conjunction with Avonex in everyone prior to being withdrawn. It's now used only as a monotherapy.
 
I have also read that the efficacy with Tysabri is about twice that of the CRAB therapies, 69%.
 
I'll admit that I'm looking for a miracle. I hope that everyone can find it, not just my wife.

booboobum
Regular Member


Date Joined Jan 2007
Total Posts : 135
   Posted 1/23/2007 8:18 PM (GMT -6)   
Buckeye.

I am not yet dx'd but the thought of the intra muscular shots scares the heck out of me too. After I had my hip replacement, I did have to give myself sub-cutaneous shot every day for a month of a blood thinner. I did the shots in my stomach area and after the first few times ( that took about 20 minutes of me holding the needle next to my skin and praying) it wasn't so bad after all. The injection is so quick and you can hardly feel it at all. Getting a shot at the dr office was never a problem for me but giving it to yourself is a bit scary. Believe me when I say, the sub-cutaneous ones are not all that bad.

Pam
migraines since 1974; septic hip - 1999 with birth of daughter ; hip replacement 9/2003; MS limbo since 3/2004; dx IBS - 5/2005;dx acid reflux - 11/2006; dx compressed L4-5 and T 7-8 - 5/2006; dx RLS - 9/2006
Clonopin, hydrocodone, Butalbital, prevacid and anything else that helps!


Buckeye
Regular Member


Date Joined Aug 2006
Total Posts : 68
   Posted 1/23/2007 8:41 PM (GMT -6)   
Just got the Copaxone today. Its in my refrigerator, as I type, staring me down shapening its needles. I have yet to call the nurse to have them come out and officially "show" me how to do this. I want to make sure I am fully on board before I start so that I'm not unfaithful to this therapy. I hope it hits me soon. In one way I just want to start it and get it over with but its not a one day deal...its for a long time. Right now I just don't see hoe "it becomes a part of your life" as suggested by the materials sent.

How do you adhear to your therapy? What makes you say "yes sir, may I have another?"

Malachy~ I did a lot of research as well and came up with the same conclusion, however there aren't too many people on it yet and it hasn't been out long enough for anything to happen. If I were single and had no family I would do it but its too scary. As suggested by a prior post, I think I will wait a couple of years and see what happens.


Please your positive thoughts...
Dana

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 1/23/2007 9:22 PM (GMT -6)   
Hi Dana,
 
    I wanted to wish you the best of luck, and please let us know when you begin treatment.  I know you had a bad experience with Avonex and the idea of a daily shot isn't too appealing to you.  It doesn't necessarily have to be a daily reminder that you have MS though.  If you try to look at it from a positive perspective, no matter what therapy you are doing, you are doing the best possible thing to help yourself that's available today.  I have faith that you have the strength and courage to do this, and I hope in time it just becomes part of your daily routine as it is with us.  Best wishes!  We'll be here to support you.
 
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/23/2007 10:45 PM (GMT -6)   
Hey Dana

So good to hear u've moved forward on this. U'r halfway there now...and u can go the other halfway too. I know it must be very scary, but as the others here have said, it can become part of u'r normal life and u can move on past this. As for now, take it slow as u have been and be ready for this. It's just fine to take the time to be sure...but don't stop on it. I'm so glad u'r taking care of u'rself! Keep doing that and know that we're gonna be right here to help u all the way.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*

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