my Rebif saga

[Mike_Shuswap]

My wife's been my best friend and biggest supporter throughout my journey with MS, but I am at a loss on how to gain her support regarding my decision to take a DMD to combat this disease.

I had the nurse over yesterday morning for my training and first injection. The nurse really stressed the possible side effects, and I think inadverdantely reinforced my wifes concerns that the side effects outway the benefits.

Unfortunatly, I did get a headache and was exhausted all day yesterday after the shot, however i often get headaches and I do suffer from fatigue. My wife chose to blame it on the Rebif....she might be right...?

I over heard her speaking on the phone to my daughters and to my mother-in-law. In all three conversations she sounded very negative towards my taking Rebif.

I told her I was hurt by her comments to our family, and wished she would not be so negative about my decision to take a DMD. Unfortunately I didn't voice my opinnion in as calm and quiet a manner as I would like....I became a little loud and passionate in stating my case...now she's mad at me.....damn!

I want her...no...NEED her to be on board with the DMD decision, like she's been onboard with every other choice I've made regarding my MS till now.

I know you good folks can't help me with this, I just wanted to vent to my friends here.

PS - I've been quite a bit more wobbly today than usual, and have shakey hands (which I get sometimes). I am trying to hide this from my wife, and this is making me miserable. I think my wife will blame the Rebif, and if I show side effects she will never be convinced it's a good thing to take DMD's.

Mike

[Mand125]

Just a thought Mike, after I had been taking betaseron for about a year my partner said to me "it obviously is just a waste of time putting yourself through these injections because you're not better really are you?"

This made me realise that I had never properly explained how the DMD is meant to work - or that they hadn't listened properly.

Your wife sounds really supportive but I think this Rebif thing is something you could do with getting sorted out now.

Mand

[Mike_Shuswap]

Thanks everybody for your thoughtful words.

I'll handle this the way I've handled all our disagreements over the past 33 years......I'll ignore it til it goes away ;o)

I know she'll work with me on this, and eventualy she may come around to  thinking DMD's are a good idea, or maybe I'll decide Rebif isn't right for me, who knows....

Anyhow, thanks all for the support, I was touched by the depth and caring of your responses.

Mike

[JemmAus]

Maybe, just maybe, she is feeling a bit overwhelmed, and maybe thinking NOO, not side effects from a drug on top of everything else!  maybe she is worried that the side effects will only add to the whole drama that is MS....

Just trying to think from a carer's perspective....

Good luck

[jdarie]

Dear Mike,

Give your wife the time and space that she needs to accept that which you have told her that you need to have her support on. You have stated your need, along with your feelings about taking Rebif. Ask her to consider being a part of a forum for spouses of people affected by MS. I hope she reads the positives aspects of being on a DMD> 1. Decreased frequency of relapses. #2 Decrease in the severity of breakthrough relapses, which do happen sometimes, while on a DMD  DMD are for relapsing remitting type MS.  

My experience is 35 years (diagnosed 1977) with MS. No DMD available  until 1994 or so, Beterseron for 14 years ( had severe flu like symptoms at first, took Tylenol X-Strength one hour before bed, shot, tried to sleep through it, in a few weeks no reaction) Once in blue moon would have a reaction that caused muscle spasms and pain, but heating pad and Tylenol and sleep got me through them. I went off for 6 weeks in 09, switched to Copaxon, remained on that but have since decided to go off DMD. It is very rare to have relapses after 30 years. MS is chronic, so I have symptoms but I have lived a full and good life with MS. Still walk and I am active. It is a livable disease for those lucky enough to have a type that is not severely progressive. All we can all do is try and do the best we can do. And it does help to have supportive family. But if they decide they just can't do that(and I have been there) that is THEIR choice. Your task is to get better and take care of yourself Mike. We are all given a path, and sometimes it seems like we are alone. Then all the sudden the path turns and you will see and feel the support you need.

Please pass a message to your wife from me. Let go and trust that all will be well. It is scarey but what part of life isn't at times! Hope Floats.

Jan

[sllowe]

Hi Mike,

You probably didn't get the headache from the titrated dose and it's most likely just your MS. But, if she's looking for an excuse to dismiss the med, she'll get it one way or another regardless of you speaking out.  

Heck, I understand her a little because I did it myself, to myself. I blamed everything on the med, just to talk myself out of it - against my better judgement, and my knowledge.  My hubby doesn't show much concern whether I'm beinghave and taking my med, or if I've missed it thankfully he wasn't on the same brainwave as me or I'd probably not have made it to this point.

Long story short, I went of Rebif for a little bit (for totally different reasons) and I had the very same problems as I did on it. So, in the end it was MS causing me problems, not the Rebif.

I'm 3 yrs in and I don't have severe relapses like my 1st attack. That says alot to me - it's my proof, for myself. She'll get her proof too, one way or another, and she'll be right by your side frm that point on.  Your thoughts are spot on and she very much does need to be on board w/you for this med schedule.

If you've not done so yet, go to the MSlifelines website and punch in your zipcode. There is a slew of lectures going on all the time, pick one you think she will benefit from too and bring her for a night out.  Lots of those here are at restaurants so if it's the same in your state, pick a good one and enjoy a free meal too!

She'll come around. Hide what you can for now - it's probably what's best for this very moment (but not for long). Wishing you both the perfect moment in time to chat about this reasonably.   I know those moments are far inbetween sometimes when one feels so strongly about the topic.

Very proud of you for getting through your 1st injection! Good job. Let the negative conversations roll off you for now...(sorry to ramble on).

-shell

[Lulu54]

Hi Mike,
It takes a while for our systems to get accustomed to these DMDs.  Each one is a foreign substance to our bodies.  It may be a while before your body settles into the routine of injections.

You will want to take your injection before you go to bed so you can sleep off the negative side effects.  I am on copaxone, that doesn't have that problem so we will have to wait for other Rebif users to come up with tips for you.

Now for your wife - I do wish I could sit down with her over acup of coffee or tea or maybe even go out and have a beer and discuss her concerns.  If she is usually supportive, there must be something huge in the back of her mind  about Rebif that is bugging her.

I would tell her how fortunate those of us with MS are that we are dx'd in this time - 20 years ago there weren't any therapy choices and people had to live with what ever their MS would bring.  

I would tell her how taking a DMD gives us the best hope of remaining ambulatory for our entire life and how those DMDs have made our expected life span now equal to the healthy population . It used to be MS patients died 7 years earlier, but that is no longer the case.

I would tell her how having MS *****, but with the support of those we love, it can be made bearable.  We need positive people around us to keep our spirits up as we wrestle with this monster.  

There is probably a whole lot more I would tell her, but I'll stop at this for now.  If you want, feel free to print this and give it to her.  I hope she can stop being so afraid of the Rebif and get on board for all the good things these injections represent.

good luck and be well, Lulu

[jensequitur]

It sounds like your wife is normally very supportive, and is just getting a little worried about the Rebif.  Maybe it's because it's a shot, rather than a pill.

It would probably help her if she knew what the Rebif did, and how it keeps the disease from progressing as quickly.  

[twopack]

I'm sorry to hear there is discord about treatment choices in your household at the moment Mike.  I know you realize that only you can make the best decision for yourself.  Still we all want and need that person who is there to support us 100% in the journey.

Maybe when you have both had a little time to become calm you can sit down together and come to an understanding.  If you have been married more than a week I'm sure you both have some experience with this type of thing!

Perhaps you could agree to a specified period of time that both of you can make observations about your daily health experiences without deciding on any origin.  If she would feel safer, you could agree to specific symptoms that she doesn't feel comfortable ignoring.  Promise to consult the Rebif nurse or your neuro about those.

After a agreed on reasonable period of time (at least a month I think) you could come back together to reevaluate.  This might help take some of the pressure off both of you.  As you know, she is most likely feeling concerned and helpless.  Sometimes it is very hard for a woman to see someone else helping her husband when she is feeling powerless herself.

Of course you would have a much clearer idea of what might work for the two of you and what she might actually be feeling.  She may be needing you to ask her directly though.  Please do let her know that you care about her thoughts and feelings in this.

Sorry to be so intrusive.  My own desire to help is prodding me to be overly suggestive.  Just know we are thinking of you and support you from our hearts.  Plenty of good energy is being sent your direction.

Mary

[essdipity]

Hey, Mike, I'm glad you posted about this. Lots of members are bound to chime in, which is a good thing, since you'll need the collective wisdom of the whole forum to deal with this problem.

I'll start my part by urging you to give your wife lots of info about the DMDs for MS. I hope she will be impressed by the data and not stay stuck on her emotional reactions. They are very understandable, of course, but it is you who will do these injections, so it should be your decision.

Just as some anecdotal info for you, I have been doing Avonex for a bit over 2 years. As you may know, Avonex is an interferon very similar to Rebif. I started in July 08, and my MRIs for 09 and 10 have changed very little in that time. That is in comparison to worsening almost every year from 00 to 08. I am not without symptoms, of course, but all in all I feel very lucky. I think Avonex is really working for me.

I suggest you do your shots just before bedtime, and make sure you premedicate with something like Aleve. If you're like me, you'll sleep away the side effects the big majority of the time. It's sure worth trying, no?

Whatever you do, try to resolve this conflict with your wife. It would be miserable to have to hide any effects you get from Rebif. You both really need to be on the same page with this.

Best of luck,
ess