MS treatments

[Katoz64]

After some long and stressful testing, I have been diagnosed with MS, I currently go to swedish hospital, I have been given several treatment options avaiable to me, I didn't want any treatment but was advised I would get worse, more loss of vision, severe back pain, toes & fingers hurt..these things all get me down. I work with special need children and some days   are so hard on my body..have until Feb 6 to make choice, so my question is what medications/injections do you take and how you feel about them, I just want information that might help me to deside. Choices are Avonex, Betaseron, Copaxone & Rebif..thanks for any information..

[Lulu54]

There are pluses and minuses to each of the drugs - doctors know that not all people will react the same way to the same drugs and we are very lucky to have choices . If one doesn't work well or isn't tolerated, we can move on to try another one.

I do like to recommend when faced with the decision, that you check out this aid   it is a UK site, but it is still helpful.  It hasn't been updated to include Gilenya or Aubagio, the two oral drugs that have also been approved for use in the US.  There are pluses and minuses to those treatments as well.

http://www.msdecisions.org.uk/

It is always good to hear doctors giving the patient control over this choice but it can be daunting.  Do some more reading and be sure to come back and ask your questions.  There are plenty of people around with experience who are willing to  share their ideas.

good luck - you've taken the first big step in gathering information and educating yourself in the choices.

be well, Laura

[Katoz64]

Thank you all for the great advise, I know the choices I make will be for me, I think I just needed some insight of what others thought..

[jujuminx]

Well, I am sorry for your diagnosis. It's never a happy day when you are told you have a lifelong disease. As you dr has told you however, there is some good news here and that is that there are drugs that can, in some people, slow the progression and maybe lessen the severity of the symptoms should you have another relapse.

It would be of great benefit if you looked at each of the drugs and discussed the pros and cons with your neuro.

I am on copaxone and have been for about 2 1/2 yrs now. At first I sometimes had small lumps at the injection sites. Now I don't have any reaction at the injection sites.  So far so good as I have not had a relapse since I have been on the drugs.

Good luck to you.

Julie

[SarahL2491]

Like Kyle, I too am on Tysabri and that choice of what to use is up to you and your doctor.  Many of the drugs have a help line and caseworkers who will talk to you even before you have signed up.

Also check your insurance to see which one it might cover.  I cannot take the drugs you have listed because my insurance will not cover them to the point that I would have to mortgage my house to afford them.  Not to scare you but many of these drugs, without insurance, are around $30,000 to $50,000 a year.

My choice made with my neurologist who is so thoughtful, was made because my Tysabri is covered 100% by my collective insurances.  That said many of the drug companies have assistance for those who cannot afford them.

Closing the checkbook, consider the other option.  MS is working 24/7, behind the scenes, in the dark, and may leave you alone or may nag you or strike out with relapses.  We never know and those of us on DMD drugs (disease modifying drugs) usually take them because we'd rather not make the decision of which door to pick (the lady or the tiger).  It's like buying insurance.

As others said, there is always a trade off.  No free rides.  There is a side effect, almost, to all of the drugs we take and the collection of other drugs to help handle the nuisance symptoms we also get.

If you have children, and it were me making the choice you are faced with, I would take something, just so I could possibly help myself be there for them with less disability than if I didn't take anything.  You can't reverse the permanent effects after they occur.

The MS website is a wealth of information as are the health topics listed on our site (on the right side).

We're here if you get stuck and have more questions!

[kwarendorf]

I agre with TLC completely! You shouldn't be afraid to uses any of the available disease modifying drugs (DMD's). Their saftey profiles are well established.

As TLC said, what drug I use doesn;t really matter. What matter is what drug will work for you, both in terms of your lifestyle and the drug's effectiveness.

For the most part my MS is also invisible to others. I credit the DMD I'm taking (Tysabri) with helping it stay that way.

MS is a life sentance at the moment. I think it's my job to do everything I can to combat it!

Kyle

[TLC_31]

There's no guarantee you would get worse without one of those medicines. However, when we have so many tools available to us with proven efficacy rates and strong safety profiles, there is so little risk to going on one. Side effects can be a problem for some, but there are ways to mitigate those, and they are still usually better than disease progression.

I have used Avonex since 2004 (with one seven-week break to try Gilenya). It has served me well, and my MS isn't really outwardly apparent. But it shouldn't matter to you what I use, or what any other particular person uses, or what the majority of patients use (except that you know who to look for if you have questions about a particular medication). All of the meds have success and failure stories, and there is little way of predicting what your outcome will be.

One comparison site is linked below. I suggest you pick the med that you're least likely to skip or otherwise miss a dose, because that's money and time wasted. Remember that you can change drugs if the first proves ineffective or intolerable. And ask questions anytime!

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx