Hi RedPenguins!

Here is my experience with the dmd's in the past 9 months:

On Copaxone for 8 weeks. I went to see my neuro after the 8th week and dropped my pants and showed him my legs. Then I showed him my arms. I had to inject into already compromised injection sites so I had a large infected, blister on my arm. That was the end of C for me.

On Avonex for 9 weeks. I was so ill from the Avonex my husband even suggested I see the doctor to be taken off of it. I never got over the flu-like symptoms at all. My right eye was nearly swollen shut. My retinologist could find no physical reason for this anomaly nor could my neurologist. I was very depressed and didn't even realize it until I stopped the interferon. My eye went back to normal after a week off of the Avonex.

These are just my experiences. If I had followed the suggested waiting period of a year or two to allow my body to adjust to these medications, I shudder to think what may have happened to me.

If your quality of life is greatly diminished then switching medications is completely justified. I just started Tysabri today after deliberating for quite some time. I'm fully aware of the problems and benefits related to the drug. I am willing to take the risks involved.

Are you having problems with Copaxone or is that you don't like the daily injections? It is ultimately your decision not your neuro's about what you decide to do. Everyone has their own reasons for not wanting to use a certain med. If it's affecting your quality of life, do what you need to do for yourself. Take some time to think it all through.

I hope you're having a better day today

There are a few key points with your experience though joellelee.

1. You had serious adverse reactions
2. You tried different two drugs
3. You deliberated and became fully aware of the problems and benefits related to Tysabri, before making the decision.

If you can't take the other drugs, and you are fully informed about Tysabri, it sounds like an informed and good course of action for you.

That is not the case with Keri though.

Cherie

Keri sounds like she has done her homework.

Keri reports her neuro spoke with her about Tysabri before she started on Copaxone.

It's between Keri and her neuro, but ultimately, it is Keri who decides what treatment she chooses.

My advice is and always has been to research the choices and make an informed decision about what treatment YOU can live with.

While we all need some time to process the information we receive about MS, the learning curve is not as steep for some and more for others.

While some here might think Tysabri just popped out of the closet, it was in research and development for twenty years. It has proven science behind it. It's not the answer to everyone's MS, but it is another tool in the treatment box for all of us.

Whatever you choose Keri, we are here to support you. Take time to research ALL your options, including the alternative therapies. There are many here that do just fine on them too.

Your MS didn't just happen overnight and it's not going to hurt if you take more time to learn and understand the risks and benefits of each therapy.

I hope you are feeling better today!

Keri -

I agree with Riverwild - do the research you need to do and make your best informed decision along with your neurologist - I did take steroids and if I had known their long term side effects I probably would not have taken them - at least not 3 times - but that thought is hindsight and at the time I took them I just needed out of the situation I was in - this is a good website and the people here do care and most of all they understand exactly what you are going through --

I agree, research is important. Yes, DH was on Solumedral for many years however, because of it he does have the starting of Cataracts, at the tender age of 52.

River -

You are correct - I did my research. I am not willing, right now, to risk the exacerbation of my depression...I have lived on the verge of suicide for too long to put that back on the table, so to speak (but aha - this dx of MS certainly sheds some light on my always "drug resistant depression)...anyhow....other than the risks of worsening depression, there are the side effects of the interferon treatments. Yes, I know they aren't the end of the world....that being said, I still don't want them if I don't have to have them if I don't have to). And I think that some (this I haven't fully checked on, I admit) are intra-muscular needles - those freak me out. LOL. I'm thrilled I've been able to handle the Copax shots. (though, I spose I would rise to the occasion, but I digress)

Now, how do I know that Copax isn't strong enough for my MS? I don't. How does my neuro know? I dunno - I spose he doesn't either - but I'm relying on his experience and the experience of his practice. Truth of the matter is - it seems that no one has a clear understanding of much of how this disease chooses to do whatever it wants to do when it wants to do it and how it chooses to do it!

The other thing is - I'm not afraid of dying - I'm not afraid of death. I'm more afraid of this disease. I'd be better knowing I had "x" amount of time to live...or whatever. Instead, I have a big question mark over my head of many unknowns. It feels awful. With death - you know what you're up against, with MS, I don't feel like I do. (I may be wrong - I'm new to this - but right now, it feels this way.) Anyhow - I think I can live with physical disabilities thrown my way - however, I know I can not live with my cognitive faculties being messed with - and I fear that. I will not live as a mental marshmellow...and knowing my "luck" - that is the part of me most likely to be attacked first, hardest, and fastest. (Kinda like the dumb luck a world class athlete has where they become a paraplegic, etc.)

Anyhow - I'm willing to take the risks, as of now. Again, I know it isn't the miracle cure. Like everything else - it works for some, not others, not everyone.

As for the interferons, if the Tysabri doesn't work - I am going to have to re-consider those and look more closely and decide what I am willing to live with at that point...but I'm not there yet.

Thank you for your support....

~Keri

Hi Keri,

I feel for you and what you're going through.

You probably don't realise it right now as you appear to be pretty spaced out about this disease at the moment, but a large number of us were once exactly where you are now.

I was diagnosed 30 years ago, and because of severe drug reactions, I haven't been able to take any of the MS medications.

Keri, I can still walk around, granted with a cane now, but that's only been for 6 months and I've only just given up my job that was almost full time in a busy hospital setting.

Not everybody progresses with MS, in fact at least a third of people never do....please some-one help me out with those statistics.

What I'm trying to say is please don't give up hope. Make your decisions on the information that you've gathered so no matter what you decide, you'll know that's it's the best one you could make in the circumstances.

I hope you're feeling a bit better now. Do keep in touch and let us know how you get on.......Hugs from me...

Hi Keri~
First off, big hug!

I remember back when I was first diagnosed -- almost 9 years ago to the day -- and what a terrifying time that was. Everyone deals with it differently and while I soaked up every bit of info that I could about the disease and treatments available, I think I also stuck my head in the sand.

I thought to myself, "I have MS, but I'm not like the other people who have MS...they are cripples and have an incurable disease. I'm just a little sick for now but I'll get better and this will all just be a bad dream."

Of course that didn't happen, but I also learned over the years that not everyone is crippled by this disease, and even if they are in some way, it hasn't diminished their quality of life.

You are inspiring to me because throughout your posts, even tho you are struggling to get a grip on this new reality, you have maintained your sense of humor. Parts of your posts made me laugh out loud! (Especially the one about how they have a smilie for "meltdown" - rofl) That's been my biggest salvation -- having my humor. Whenever I have had to go to the hospital I've become a stand up comic and entertained everyone because humor is my way of dealing with fear. It can be dangerous making your nurse double over with laughter while she's trying to insert an IV tho. Word of caution.

I agree with those who say you should let your closest friends in on everything, and hopefully not many will turn tail and run. MS isn't catching and it's not the end of the world...maybe they will see that and their compassion will surprise you.

As far as what you said about hearing a relapse could last a year, I've never heard that. Doesn't mean it's not true, I've just never heard that. Over the course of my disease, most of my relapses have lasted a couple of months and then the healing process took a long, long time.

It's been over 8 months since my last attack and I still notice certain symptoms fading away. I asked my neuro how long the healing process could continue; at what point does it quit. His answer was that it can vary from one person to the next, but that most of the repair is complete within 12 months.

Anyhow, you seem like a really sweet girl and I'm so sorry that you had to join the club, but now that you are here, you have a wonderful support group of people who "get it".

Welcome!