Would it be the end of the world?

[Ojibajo]

Would it be the end of the world if I quit taking a DMD. My symptoms aren't THAT bad and I have probably had MS for 15 years anyway before I was even diagnosed. I am really sick of injections. They hurt, don't get easier and no, you don't get used to them. It just blows and I don't want to do it anymore.

[sllowe]

Hey Oji -

I'll admit it - I'm sick of mine too. And, of course i can't say for certain they are working or not. Heck, my MRIs are good - I'm symtomatic every day, but not totally dysfunctional like my 1st attack.

Maybe I'd be ok if I wasn't injecting. Maybe I wouldn't be who knows. BUT, I'll say this for certain - it's easier to be complacent when your not as bad off as you know you can be, or you were in the past.  When I have good days in a row - I think just like you mention here.. Then I get the reminders - small ones that remind me of 07 and I lay my shots out on the counter and chin up.

You can do it - I know you can. It does rot - but it can always be worse :) YOu just needed to get that off your chest - or are you need us to get loud, lol
Going to go get mine out now - you?
((((hugs))))
-shell

[jujuminx]

Progression and lesions can occur even without symptoms.  Lack of symptoms doesn't mean your disease isn't progressing or that you will always remain symptomless.

I seem to remember a person who posted several months back who regretted not continuing with her dmd's when she was feeling fine, only to have a relapse and was facing a sudden worsening of her disease.

We all have to ask ourselves what we are willing to put up with to have the possiblity of normal life.  Do the drugs work for us? Are they worth the hassle? The cost?  Is the cure worse than the disease?

I have had MS probably 18-19 yrs now.  The only symptom I have now is heat intolerance.  With the exception of the last relapse last year which produced a variety of symptoms that eventually faded, all my previous sx were pretty mild.

I fought to get on my dmd asap. Wouldn't allow SS to even delay through a long holiday weekend.  It mattered to me to do whatever I could to give myself the best chance I could to lead as normal of a life as I could for as long as I could. When I think of all the people who want the drugs but cannot get them for whatever reason, I feel lucky and guilty all at the same time.

I don't know where my MS will take me in the years and decades to come but I do know that as a progressive disease, my body will be constantly fighting itself to survive, forever (or until a cure is found). There is no way I want to look back and regret not giving myself every opportunity to stay as healthy as I can until that cure is found.

The end of the world?  It COULD lead to the end of your world as you know it in a few years.  If you are willing to take that chance, then it's your choice to make. It definately is not one I would be willing to even consider.

Good luck to you.

Julie

[Ojibajo]

The reason I didn't go on the ONE oral drug available and the reason that my neuro wasn't comfortable with it is because it just came out.

Also like I said before, I have probably had MS for the past 15 years at least, with no major progression. I wouldn't have even known that I had it had I not gone into get my migraine medication adjusted.

[Ojibajo]

I have no idea if the injections work or not. I am told that the injections don't do anything for my symptoms (which seems somewhat illogical), but I feel pretty much that same as I did before my diagnosis. I am not due for another MRI for probably another year. The only reason I was even ended up being diagnosed is because of the lesions that were found on the MRI that was given for my migraines. I didn't go in with an symptoms that I was overly concerned about.

[HVAC]

I know injections are tough. They are really important if they work for your MS.

You can stop taking your DMD. Will you be angry at yourself if you end up in a wheelchair? You can get really sick of not being able to use your arms or legs. Will you feel if you lose your sight you did everything you could have done?

I went off my DMD when I was diagnosed with PPMS. It was a hard decision. It is like going down a mountain with out brakes.

Progression happens with or with out symptoms. Once the disease has progressed it has progressed. It is not like you can start the shots and reverse it. Talk to folks who got MS before the DMDs came out. They will tell you how much they would have loved to have had the chance to slow the progression. many people have fairly normal lives these days.

I had very slow progression for 45 years now it is picking up. I am thinking of taking a Chemo drug. I would trade daily injections for that any day.

Alex

[COBOB]

DMD's are your best bet at preventing an increase in your Expanded Disability Status Scale (EDSS) in the overall population of people with MS.  It also depends on the person and their disease.  For some folks, the DMDs make no difference, for others, they make a huge difference.   With a drug like Copaxone, it can take 9 months to modify the immune system's response, so stopping can mean a period of time before you can ramp back up.  

I agree with others that switching to an oral medication might be a better choice.  Have you discussed this with your neuro?

Bob

[supermum_ms]

I would not stop taking them if they are working!!

I've probably had MS for 15 years or more and prior to 09 I would say my sx mostly went away and nothing really over the top, periodically problematic yes but not disabling, I cant say that anymore. There is nothing and no one who can say which relapse will bring about the 'big bang' that changes everything, mine came in 09 and there is no going back, its done!

YES it blows but the alternative blows even more, so please hang in there, or consider trying one of the newer none injection DMD's before giving up on them completely.

HUGS..........JJ

[doublevision1]

That's not a risk I'd be willing to take.  There's no way to know when an individual disease course may accelerate.  

Have you considered switching to Gilenya if the injections are that bothersome?