I Don't Know What to Do

[loopey]

I was dx about 4 years ago and have been on Aubagio for over 3 years. I haven't had any new lesions or flares. But almost every day I feel ill. Not nauseated, just sick. I am not sure if it is a side effect of the Aubagio. 2 years ago a MS neuro (not the one I have now) advised me to stop Aubagio for several weeks to see if I felt better. I was terrified to stop.

I am dizzy all day, every day and have many sensory symptoms but the sick feeling is destroying my quality of life in a huge way. I am tempted to stop the Aubagio for several weeks but again I am terrified that I will have something terrible happen. I have lost over 40 pounds and my current neuro said it wasn't the MS or the Aubagio. Therefore, I have gone through as many tests as my GP could think of and nothing showed up except Chronic Gastritis. My stomach does not hurt though.

So I don't know what to do. I believe stopping Aubagio for even just a few weeks is risky but I am so sick of feeling sick. I feel like I can't stand it anymore.

Does anyone else just feel sick all the time? What do you do for it?

[jenphilly]

I am so sorry to hear you're feeling so terrible everyday.... I know the not feeling well impacts your quality of life, just this week I've been sick all week with extreme fatigue, feeling dizzy and just overall not feeling well...

The dizzy sensation is part of MS, goes with balance issues for me personally. Have they considered food issues? I know I felt terrible for the longest time until (actually on this forum and chat), someone suggested I keep a food diary and was quickly surprised to see a pattern develop. It can be any food or even something specific. The first thing I realized that really affected me and made me sick to my stomach or sent to the bathroom was artificial sweeteners. Its just a thought for you.

I hope you feel better soon or can find what is causing your symptoms.

[WillyNilly]

Hi loopey. I've been "MIA" here fore quite awhile again so you probably don't recognize me.

Yes I am one that feels unwell the majority of the time- dizzy, fatigue, unbalanced...etc. and no I have never taken the MS meds.

I wish I could help but nothing I have tried has been effective for me- except Valium. My Dr. won't prescribe it for anything more than a few for desperate "panic attacks". She doesn't want me addicted, which of course I understand, but my attitude any more is "I'm not going to be cured so who gives a crap about addiction if I feel better?" I hate that I actually understand and mostly agree with her. I say mostly because I have never indulged in "recreational drugs" except alcohol, mainly regular strength beer, nor have I ever gone overboard when I have pain meds for any reason. I stop them as soon as I can stand it and always show her my leftovers so she is aware what I have at home should another need arise.

Oh well, can't always get what you want, right?

The weight loss? Yes here too. Back in 1995 I got a bug (?) or possibly the first and so far only extreme MS attack, never has been determined, and I went from 145 to 2 digit weight in a matter of weeks. Now all these years later I struggle to maintain 120-ish, presently it's dropping slowly again.

Will you be seeing your MS neuro again soon? If you don't feel you can speak plainly about your discomfort write it down and ask him to read it because you feel you can express it better on paper- if that's the case.

I'm sorry all I can offer is commiseration. I know you and I aren't the only ones that feel unwell, maybe we'll all be lucky and YOUR neuro will find the magic combo for all of us!

I truly hope you will find your answer and feel better very soon.

[pennstater]

Loopey,

Why did you doctor say it is not MS or Aubagio? Did he give any reasons/explanations? I am not familiar enough with Aubagio and how long it takes to clear out, but know I had to go off Rebif for weeks before starting Tysabri. Nothing happened and I realized side effects Rebif gave me.

Going off a DMD is a risk, but it may be one you need to take if you are feeling so horrible. I would though do it with your neuro's knowledge, in case any dosage tapering is required and to understand the wash out timeframe.

Hope you feel better.

[rdmc]

Hi Loopey,

Sorry to hear about your dizziness, it's an awful symptom.

I have dizziness, but it's intermittent.

The overall feeling like I'm just getting over the flu is pretty much a daily thing for me. I work from home, and if I didn't there'd be no way I could overcome the sick feeling to get into an
office everyday.

I think just good old MS fatigue can induce the problem of feeling ill, but I never have had weight loss, that certainly would contribute to feeling ill.

I don't take a DMD anymore, so it's not that. I took Betaseron for many years and thought that when I quit a few years ago, it might help with my general feeling of yukiness...but it didn't.

If you use the search bar above and search "feeling ill" you'll find quite a few threads where this
ill feeling has been discussed. I remember Tawanda has always said that she feels ill. I'm sure on
those threads you'll find more stories of those who deal with it.

Sorry, no advice from me. I deal with it by managing my activity level. I sure hope you get some answers to your weight loss.

[palmtree]

I just woke up,in the middle of the night with extreme dizziness. Logged on and this message was timely. It's strange. There doesn't seem to be any rhyme or reason to when this comes. Yesterday I overdid it. So I'm not too surprised.

My doctor where i used to live prescribed Mezcline. It helps a little. Right now, I'm too dizzy to writes anymore. Good luck! If you find the answer, let us all know.

[palmtree]

The first two years after I was diagnosed I was losing weight like crazy. Marijuana is the key if you have it available in your state. I took it for about a year and it reversed the problem. Now I have too much appetite. But that's another issue.

[jreagan70]

Hi loopy:

I'm sorry you're in such a tough situation. Often there's no easy solution, and sometimes all of our choices are bad. Sometimes, to get the best quality of life, sometimes the best you can do is pick the least bad choice of the bunch.

When I was on DMDs I didn't feel outright "sick" every day, but I certainly felt unwell every day. Unlike some folks who don't feel any better when they stop taking the meds, for me, the more meds I stopped taking, the better and better I felt.

Since there's no way to predict, the only way you're going to find out if you feel better off Aubagio is for you to actually stop taking it. And that's certainly not an easy choice to make because it's so complicated.

One thing no one has mentioned yet is that Aubagio is unique among MS treatment meds in that it clears from the body so slowly. From the Aubagio prescribing information: "Without an accelerated elimination procedure, it takes on average 8 months to reach plasma concentrations less than 0.02mg/L, although because of individual variations in drug clearance it may take as long as 2 years."

If it takes from 8 months to 2 years to clear, just stopping Aubagio for several weeks may not be long enough for you to be able to tell if it's causing you to feel so sick. You may have to go through the accelerated elimination procedure, then be off it for several weeks.

The idea behind treatment meds for any inflammatory disease is to keep patients off steroids. Between an intolerable treatment med and steroids, both choices are bad, but sometimes steroids still need to be used and are the lesser of two evils. In my case, I've been through many treatment meds I couldn't tolerate, and now I manage my disease with steroids only.

Depending on how comfortable you and your neuro are with steroids, it's possible to use steroids as a stop-gap method of possibly preventing relapses while you're off Aubagio for a while. Steroids have been used this way, and it's possible for you to, early in your time off Aubagio, start with a whack of steroids (IVSM or high-dose oral prednisone) to squelch any inflammation that might contribute to an attack.

It's true that a course of steroids will have its own side effects, but steroid side effects subside within a couple of weeks and you'll be able to then continue with your assessment of whether you feel better off Aubagio for the next several weeks.

This course of action involves many trade-offs and choices of the lesser of evils. Only you can decide whether those trade-offs are preferable to living every day feeling sick and not being sure why. If you don't try it, there's no way for you to ever know if you'll feel better off Aubagio and (perhaps later) on another med, and whether your quality of life will improve.

This also will involve working very closely with your neurologist and possibly other doctors. Some of how the journey goes will depend on how comfortable your doctors are in working with you and doing things they may never have done before. It's easy for your docs to tell you to just stop Aubagio for a few weeks because they don't have to actively do anything. It takes much more involvement for them to see you through the accelerated elimination procedure and steroids.

For me, it got to the point where my quality of life became the most important thing. I decided that if I was going to feel bad every day, I would rather that it came from MS itself and not from the medications. Maybe I just got lucky, but my quality of life got much better when I got off the treatment meds. I take a huge risk now taking on the detrimental effects of living on steroids, but it's the only way I could get my quality of life back.

When you search your soul and have a complicated and difficult conversation with your doctors, you might come to an entirely different decision.

I wish you all the best in making a really, really hard choice.

[Kimba22]

Hi Loopey,

Sorry to hear you haven't been feeling well all this time. Unfortunately, all you can do is go off Aubagio and see if that helps. Since waiting 8 months to 2 years for the drug to clear your system would not be the best choice, it can be cleared in 11 days. http://www.msworld.org/forum/showthr...of-your-system

Weight loss IS a less common possible side effect of Aubagio. http://www.drugs.com/sfx/aubagio-side-effects.html. I had this side effect while taking another DMT.

And just because a side effect isn't known from a drug doesn't mean it can't happen to you. I had a really bad reaction to Rebif.

Best of luck

[marti]

Hello Loopey,

Thought I'd ring in here as someone who feels awful every day! And I have chronic gastritis. I used to take Copaxone but was taken off because my neuro felt it wasn't doing any good anymore. I was getting some pretty strange side effects from it.

I feel that the gastritis is worse than my case of MS. It is torture sometimes and I feel it every day. I also have IBS so every part of me either hurts or feels sick.

I go through periods of dizziness that doesn't seem to ever quit. Then, it will stop before I even notice. But this dizziness is so terrible. I haven't found anything that helps much. For me it's kind of a cross between feeling fatigued and lightheaded. Really limits my activity.

It's good to know that your gastritis doesn't seem to cause pain. How did you know you had it without the pain? And what are you doing for it? I didn't think it was possible to have gastritis without pain or heartburn ( GERD ).

Best of luck to you.

[marti]

Hello Loopey,

Thought I'd ring in here as someone who feels awful every day! And I have chronic gastritis. I used to take Copaxone but was taken off because my neuro felt it wasn't doing any good anymore. I was getting some pretty strange side effects from it.

I feel that the gastritis is worse than my case of MS. It is torture sometimes and I feel it every day. I also have IBS so every part of me either hurts or feels sick.

I go through periods of dizziness that doesn't seem to ever quit. Then, it will stop before I even notice. But this dizziness is so terrible. I haven't found anything that helps much. For me it's kind of a cross between feeling fatigued and lightheaded. Really limits my activity.

It's good to know that your gastritis doesn't seem to cause pain. How did you know you had it without the pain? And what are you doing for it? I didn't think it was possible to have gastritis without pain or heartburn ( GERD ).

Best of luck to you.

One more thing. Gastritis can and does cause dizziness. Not sure why, but it does.

[loopey]

I found I had chronic gastritis when I was undergoing a series of tests to determine why I had the weight loss. I had a endoscopy and they dx chronic gastritis but the doctor did not prescribe anything for it since it doesn't cause me any pain.

Thank you all for your responses. I am still not sure what I will do but will evaluate my options when I see my neuro in 3 weeks.

[marti]

I found I had chronic gastritis when I was undergoing a series of tests to determine why I had the weight loss. I had a endoscopy and they dx chronic gastritis but the doctor did not prescribe anything for it since it doesn't cause me any pain.

Thank you all for your responses. I am still not sure what I will do but will evaluate my options when I see my neuro in 3 weeks.

I went down to 82 lbs from about 100. Yikes. Scared me a lot. But I had and still get a lot of GERD and heartburn. But, I take Zantac everyday which seems to have helped with the Gastritis. Now If only we could find some easy treatment for the MS, right?