Talk me into DMDs

[flyfarfaraway]

Hi all, my neurologist really wants me to go on Rebif 44mg immediately. I said no. After reading all the side possible side effects like it stressing your liver and making a low white blood cell count, plus it sounds like it makes you sick most days . . . AND then seeing the line on the Rebif website that said:

"The PRISMS study also showed only 26% of people taking Rebif 44 mcg had disability progression—as opposed to 37% of those taking a placebo."

--Does this mean it is only a 10% difference?! I'm just thinking the risks of this medication are too much for a 90% chance it will do nothing. Not to mention the extremely high cost.

I feel like these drug companies are playing with the numbers or something and it's not as good as what they say.

Is there anyone who has opted NOT to take any DMD's? I would like to hear how you came to your decision.

If you think Rebif or other DMD's are great I am completely open to hearing your thoughts as well. I need all the input I can get to make a decision.

Thank you to all.

[sllowe]

Hi there,

Thank you so much for asking for our input!

I will tell you with all honesty, that while I was knee deep for about 5 months in total dysfunction I would have taken anything - even knowing those well known risks.

Once I saw even the slightest improvements - enough to begin to read and think at the same time, lol I was fearful of the meds. This was because I was not in full understanding of them yet. So, of course my mind jumped on all of those things that "could" potentially happen, or have happened to others. It gave me every excuse to "not" take them. Good for me - I had my out.

But, and this is a big, big but, the more I dove into the literature, and the statistics of what "could" potentially happen to me due to what the disease was doing to me. I was faced with solid facts I simply could not ignore.

The bottom line came to me as it does with any med one needs to go on. Do the benefits outweigh the risk? And, where MS is concerned the benefits were clear. I took the risk of potential side affects with Rebif. I'm doing well. If my liver enzymes elavate, I'll stop the med. If my WBC counts go low, I'll stop the med. And, I'll be no worse off for having tried.

Not telling some of my story to convince you to take the meds. Just hoping to show you some thought processes I had and hope they help you move forward.

In the end, if you do try one or the other and it does not agree with you - you can always switch. It's not a decision you have to live with your whole life. But, MS the disease is something you have to live with your whole life. The damage does not go away. And, in many cases, it continues.

Here for you not matter what you are thinking - please know you can share all your worse thoughts - even bad ones with us.
We're here to help :)
~Shelly

[Deb61]

I actually improved about 9 months to a year after I started Copaxone.  The medicine is to help prevent relapapses, I know, but there's no other explanation for the major improvement from severe symptoms that I was encountering for YEARS prior.  I was holding on to the walls to walk, I was using a shower chair, I had constant burning pain in my feet, and hand in my hand a doctor's order for a wheelchair about eight months after I started the Copaxone.  Gradually, I noticed some of the pain gowing away and more stability when walking.  

A year and a half after starting Copaxone, I was visiting my father in Italy.  I never would have thought I would be able to do that, much less travel by myself without my husband helping out of chairs, walking any kind of distance, and picking up a suitcase to place in the airplane bins overhead.

My reaction is probably very rare and the medicine is not intended to make anyone better but to help prevent to help relapses.  I asked my neuro about this, and he told me that my brain was being allowed to heal.  I guess this is a good enough explanation for me!  I know it was the Copaxone that turned my life around.

Hopefully you don't lose hope.  I know it's scary and discouraging knowing you have an incurable disease that effects your most valuable organ. Please do consider a drug that can help with those relapses.  A little bit of medicine, even if it's 33% effective, helps prevent 33% of the lesions and/or attacks.  Who knows if one of those lesions in that 33% ray of hope was the one that would have prevented you from walking independently, eating independently, etc.  Additionally, there's medicines coming out all of the time.  Find something that will "hold" you until something more effective without major side effects comes around.

Deb

[Pfurs]

Hi all

I started copaxone immediatley after dx in sep 2010.  It's been a year and so far so good. I had a lot of itching at injection site but it went away two months or so after I started.

I have ms symptoms here and there but nothing that lasts over night.  

For me, once I got the depression under control and accepted the dx I started feeling like my old self. My former psychiatrist tried to convince me to stop taking the copaxone so I found a new psychiatrist. She felt the meds  were being pushed for a $ kickback by the drug co.

My maternal aunt was dx with ms in 1994. She never sought any medical treatment and thought going holistic was the answer. Her ms might have been more aggressive but she didn't do very
well.  You have to wonder how she would have done with a Dmd.  

It's a hard decision to make and you have to weigh side effects with benefits. I chose copaxone because it didn't have the flu like symptoms and I don't have to have the blood work done on a regular basis. (is that true? I can't really remember). The day of dx is kinda a blur.

Tracey  

[tingletingle]

Hear, hear! Powerful argument girlfriend. Boy, relate to your slurring, stuttering, string puppet symptoms. I'm now on Copaxone daily and am just hoping and praying that I'll be in the 30% category.

Flyfaraway, please take a DMD, any DMD while you still can for you and your family.

Blessings
Alex

[supermum_ms]

I'll add my 2 cents because i'm not on a DMD and by the time i get the official dx it may already be too late, i am already disabled in a lot of ways (ooh so didn't want to admit that to my self) so there is no going back in the grand scheem of things but still i'd take that 33% chance of slowing it down.

From my perspective each relapse takes more of me away and i'm rappidly running out of wriggle room. MS only got into the picture when i first started walking like a string puppet, i was also slirring and stuttering my way through conversations and still struggling to find blasted nouns, there is more but they were the OMG my brain is fried wake up call sx. So each relapse since has been a heck of a slap backwards, creeping back what is possible and accepting what isn't.

So in the 2 years since MS came into play, i'm more drunk string puppet now than not anymore etc i now fall over or freeze because of the suface of the ground, my sensory input is so fried my brain just can't work out where i am in space anymore, so down i go. I haven't given up on myself yet, I still think and want or need to believe that it will stop and nothing else will go missing from my 'what i could do before' list, still doing nothing is almost a garantee that i'll be crossing more off my list.

I think that old saying regarding loss is relevant, you do only miss it once its gone but once its gone its too late to appreciate what you had. Please dont wait until you've lost something you can't accept, dont wait until your a human string puppet before you take what ever action is available to you to slow it down. The 'its not going to happen to me' is just a fantacy, with MS anything can and does happen!

Take the (only) chance that your in that 30+% and if your not, then at least you gave it your best shot  !!

Cheers.........JJ

[Lulu54]

Hi flyfaraway and welcome.  It appears your bigger question has to do with whether DMDs are effective and worth the effort and cost.  

Unfortunately right now they are the best and only option we have to try to slow the progression of this MiSerable disease. The studies show positive results with these drugs, but they are not 100% guaranteed.  

It used to be that people with MS had a life expectancy about 7 years shorter than the average person.  That is no longer the case since we have these drugs.

Your neurologist would screen you regularly, looking for signs that the interferon is damaging your liver.  If that is the case, the drug is stopped immediately before permanent damage is done.

There are injection techniques that can help you avoid or lessen the side effects of feeling like you have the flu.  Many people here are willing to share those with out.

All of the drug companies have assistance programs to keep the cost reasonable.  If you decide to take a DMD we would be happy to point you in the right direction to get help.

Gilenya is a great option if you don't want to do injections, but it also has a down side.  It is an immunosuppresant, meaning you might be more susceptible to germs that come your way. It hasn't been in use long enough to know the long term side effects.

Copaxone is my drug, they have just passed 18 years of use, and the statistics are very good in keeping people ambulatory without the need for a cane, walker or wheelchair.  If copaxone stops working for me, I am glad there are other drugs to try.

All of these drugs offer you a chance to do something to protect your future. But as others have pointed out, it is an individual decision and not everyone wants to take a DMD.  I do know people who are in wheelchairs and have had MS for longer than 20 years who would give anything to have been offered these drugs back when they were diagnosed.

Good luck with your decision. We're here to answer questions if you want.
be well,
Lulu

[jensequitur]

I used to take Copaxone, and had to quit because of an allergy.  I now take Betaseron - I'm evidently one of the lucky ones that doesn't have a flu-like reaction.  Both of these are sub-cutaneous, which means really short thin needle.  I think both Rebif and Avonex are intramuscular.

Both of these medications have patient assistance programs, so it's worth looking into.  I think that Rebif and Avonex are for a more progressive course.

Personally, I've heard that DMDs are most effective early in the disease course.  If a patient is diagnosed with CIS, administering a DMD can keep the patient from converting to MS.  Unfortunately many neurologists are reticent to prescribe the medication, because they're afraid of side effects.

The best stats I've heard so far is 30% delay in progression.  Is this worth it?  Meh... I know my neurologist is very gung-ho about the DMDs.  She thinks the benefits of taking the drug outweigh the possible dangers.  Others feel that the drugs don't offer enough benefit for the cost.  So I guess there's no easy answer.

However, Gilenya is an oral medication that seems to have an even better success rate - I think it's 40 or 50%.  It's also easier to stay compliant, because it's oral, rather than injected.

[doublevision1]

Have you considered Copaxone?

[Zacksmomi]

That is a big decision to make.  If you are dealing with the costs of the meds, that weighs heavy on the decision.

I personally have been through rebif and betaseron and am now taking tysabri.  
During that time I have had 9 flares in 2 1/2 years.  I do think I have had MS for 20 years and that maybe its too late for me with the DMDs, but so many people have wonderful experiences with the DMDs.

I can tell you that taking Rebif did not make me sick like it says.  I did not have any real side effects that I can recall.

You should get a lot of advice on this topic.

Wishing you the best
D