Ending drug therapy due to side effects

[Vlbrown57]

If I decide to terminate drug therapy because of side effects destroying my quality of life, what will my neurologist most likely do? Drop me as a patient perhaps? I respect her and appreciate her vast knowledge, but I have such a low immune system from Aubagio. Restrictions on who I can see etc. In a quandary.

[Fancy1959]

Hello, I'm Fancy1959. Be careful letting your MS run amuck over your Central nervous system. Remember the symptoms you deal with day to day are just like a tip of an iceberg. Have you given thought to the fact that MS slowly infiltrates your Central nervous system eating away at it on so many levels. As it destroys your Milen leision by lesion it slowly eats away at your quality of life. Maybe MS hits your vision, perhaps the sensation/feeling in your feet, your legs, or your hands, perhaps your memory or your balance. Every single MS patient is attacked by the disease in different ways. We all have found out first hand how MS slowly destroys the quality of our life. Every year, multiple new break throughs are made concerning MS. Speak to your Neurologist and ask about what other therapies might work for you. Have you tried different ones? Please don'the throw your Central nervous system away by doing nothing.

Could you please tell me what Aubigio is? I am not familiar with the condition but I am on a first name basis with MS unfortunately. I am glad you have brought your concerns to this forum. Information is your friend and everyone's friend on this website.

We are stronger together. We all are part of this "dysfunctional" MS family. Once again, knowledge is power. Maybe somebody in our family is dealing with concerns similar to yours. I'm curious to hear from others to find out more about what you are going through. Knowledge is power. Together we are stronger. Fight on MS Warriors, fight on.

[Chris_Percival in reply to Fancy1959]

I just read your post and I am sorry! I have read many other posts also! I have PPMS and suffer from many things. I do not take anything other than drugs that control the pain from burning muscle weakness, numbness etc.

From reading so much from everyone, it seems that most people still progress with the drugs no matter what they take. Make me a believer but no side effects quality of life no drugs seems to be the way to go. Everyone who takes the drugs all have progression anyway.

[Sukie427 in reply to Chris_Percival]

You are sort of right, Chris. I have relapsing MS and what it's like is you go along a straight line, then you relapse and the line dips depending on the severity of the relapse. Once you are able to stop the relapse, you then have to work very hard to get back to the level you were at, or maybe you surpass that level or maybe you never reach it and life becomes a new normal with less function as the straight line continues but lower down. The reason to take the medicine is to slow the freight train that's constantly coming at us down. That's why they call MS a "manageable" disease even though it has no cure. And of course, your impairments depend on where in your CNS the lesions are. I have more on my spinal cord than I do in my brain, but one of them is smack dab on the brain stem so my legs and feet are most affected, then my arms and hands. It does certainly suck, but For myself I take the meds to hopefully slow the progress and exercise as much as I can. We are also aging so we have the effects of that as well.

[Chris_Percival in reply to Sukie427]

Thank you for your reply

[Sukie427 in reply to Fancy1959]

Aubagio is a recently approved oral medication for treating Relapsing MS. When it first came out it listed as its side effects high toxicity to the liver. But my neurologist told me (I think) that it hasn't been as toxic as it was first thought. Speak to your health care team about it.

[Fancy1959 in reply to Fancy1959]

Chris Percival,

It's Fancy 1959. Do you mind me asking how long ago you were diagnosed and how old you are currently?

[Chris_Percival in reply to Fancy1959]

I am 57. I was diagnosed 1 year ago and have suffered the symptoms for 4 years now. I have taken any disease modifying drugs as of yet. I do take large doses of drugs that control the burning, numbness, and muscle pain and weakness!

[Pink-1]

I'm new to MS and have started aubagio. Can you elaborate on the effects to your immune system. Wasn't aware of that side affect

[jkdavid99 in reply to Pink-1]

Hello pink-1

I am supposed to start Aubagio like 6 months ago but am scared. What Is your experience with it?

[Pink-1 in reply to jkdavid99]

Good so far at 2 mos in awaiting liver test results. Not much bad yet

[Pink-1 in reply to jkdavid99]

So far no problems

[Vlbrown57 in reply to Pink-1]

My compromised immune system keeps me away from my grandchildren because of colds they get and immunizations like the MMR shots. In addition I can't be involved with my church Sunday school due to not knowing who may have been immunized. I fight bladder and sinus infections constantly. My skin breaks out in little red bumps that blister and hurt. My back has peeling spots that ache. The latest development is my eyes being weepy with gritty gunk and my intestinal health is ruined. And my original MS symptoms continue to worsen. Very frustrating.

[Pink-1 in reply to Vlbrown57]

Very sorry you are having these side effects. Hopefully you will improve

[Chris_Percival in reply to Pink-1]

I do not take the drugs that effect your immune system. I have read alot of material on drugs that due. Steroid infusions 3 days in a row helped the best for me but did not last. I call it going on vacation when I get that infusion. It was great and could walk pain free. It only lasted 2 weeks.

[normwithms]

Hello, I am sorry that Aubagio is that hard on you, I have not tried that one yet. I don't feel you should be worried about how your neurologist will take the news you want out of that treatment. I have found that we who have MS are the best ones to judge the treatments we are given. Why bother to keep fighting MS if in the end the quality of our life is so bad. If it were me, I would tell the neurologist how you feel, it is her job to come up with the answers that will work for you. There are options now that did not exists a few years ago. In the end we are the ones who have to be in charge of our lives. The neurologist is on the outside making the best of what they know. We are the ones on the inside that live it, so we get to decide.

[Fancy1959 in reply to normwithms]

Norm this is fancy 1959. I think you summed up what all of us with Ms go through the best. No matter what therapy we are on we as individual patients are the ones that can best judge what works for us and what doesn't work for us. No matter what communication is the key. Talk to your neurologist. If you don't like your neurologist look around. Ask other Ms sufferers in your area. Talk to people on this site. Find a neurologist that better suits your needs. It is up to you to take charge. It is up to us to take charge but whatever we do we need to remember to fight on don't let this disease run over top of us. Don't be satisfied with taking more and more pain killers to hide what's happening to your body. Listen to your body. It will tell you all you need to know. But we have to learn to listen to it. And find someone who can help us to do so that is a professional at listening to it.

[normwithms in reply to Fancy1959]

Thank you Fancy1959 I agree with you 100%

[Sukie427]

Amen, normwithms

[dorale]

It would be nice if you told your important information here so everyone can benefit from it.

[Joannskianni]

If you're talking about Protandim, just say so ... and is this really the place to be selling it? I'm actually on Protandim and am doing well on it. My apologies, but I don't like these kind of messages because they sound like spam.

[Joannskianni]

I'm sorry if that sounded harsh -- I didn't mean it to. I agree that sharing information and experience is tremendously important when we're dealing with something as devastating as MS can be.

I personally believe Protandim is fantastic and I love being on something affordable that has worked so well for me. I suppose what got to me was the approach -- instead of stating that you're using Protandim and you're thrilled with it and then sharing the information you're passionate about, the "call me" with a phone # comes across like one of those scam posts where people claim to earn a small fortune in days.

I also agree that the cost of pharmaceuticals is out of control and that a natural supplement is much more desirable when that's a viable alternative.

And seriously, I do like that you want to spread the word on Protandim and I think it's wonderful that it's working well for you, too. I believe more people should be aware of other possibilities but I also know that it can be hard to find a neurologist that will stand behind a patient's decision to be off a traditional dmd.

Again, my apologies for coming across so rude - I hope you have a good day!

[itasara]

It has been 2 months since your reply so don't know what you decided to do. But to answer your question, IF you were to stop (which I would not recommend without talking to your neuro first,) I would think you neuro might consider a different medication after he interviewed you on why you stopped. It may be the medication that doesn't sit well with you or it could be your MS has changed and the medication is not keeping relapses at a bay. If your neurologist is not understanding, it is time to switch to someone else, which I know can be difficult to do. I hardly think a decent neurologist would just drop you like that.

[Vlbrown57 in reply to itasara]

Update: My neurologist did blood work and found liver enzymes were abnormal. Also she listened to my concerns about numbness and tingling in hands and feet. So she stopped Aubagio and prescribed chlorestryamine which removes bile from my liver and Aubagio with it. Hope this helps me all around. No more disease modifying drugs for now.

[itasara in reply to Vlbrown57]

Good thing you checked on that. Does she think that eventually you will go on another MS drug? Maybe Copaxone would be better for you.. it is not an interferon.

[Vlbrown57 in reply to itasara]

At this point I have been classified as primary progressive so no meds available that she will prescribe. New drug available in January for progressive ms. May try if insurance coverage comes through.

[Jesmcd2 CommunityAmbassador in reply to Vlbrown57]

Good luck! Will keep fingers crossed for you!