I'm going to be seeing the MS specialist on Monday, and my neuro is expecting him to recommend that I switch from Copaxone (which I have been on for almost 18 months) to something more aggressive. My neuro says that most likely, this relapse I just had means that the Copaxone is not working as it should be. Of course, he is hoping the MRI I will have on Friday will confirm or deny his theory.
Anyway, I'm trying to prepare myself for switching to another DMD. Is there a typical order that DMD are tried? I know most people start with Copaxone because it has the least side effects...but what is the next DMD that is tried if Copaxone does not work? I would like to read up on whatever the most likely DMDs will be so I can have a better idea of what to expect.
There really is no order of events for trying them, unless a doctor feels strongly about one med vs the other based on your clinical case. I started on Rebif and been on it ever since.
I've heard some doctors refer to Rebif and Beta as the strongest, but over time they are equally effective for those who respond well to them.
But, that is the key....for those who respond well to them.
These days, it's more about identifying who responds to what (i.e., biomarkers are the way of the future), because not all MSers will respond to all DMDs. They are identifying the biomarkers which will hopefully predict individual successful treatments.
So, if this doc wants to switch you because of relapse after 18 months, then I feel he/she is being proactive. Feeling there is a chance of relapse free on something else (I like this thinking :) Ultimately, it should be your decision in the end. i.e., if you are comfortable with the one relapse and feel the med is keeping you well then you can stay on it.
If not, the interferons are an option for you. Worse case scenario, you relapse more often on another med, and you co back to copax.
This is an excellent quesion, and one many fairly new to MS are wondering about too.
What is the next DMD that is tried? Actually, it is you, the patient, who answers that question. Your doctors will have suggestions, and people like us might as well, but it’s your decision. And I don’t think there’s a wrong one, as long as you’re attacking the disease with something.
Interferons have stood the test of time, and although they don’t have any better (or worse) track record than Copaxone, they work in a different way, so I suspect one is worth a try. And the side effects really may not be an issue for you; they’re quite manageable for me (on Avonex). Gilenya and Tysabri are newer and slightly riskier, so doctors and patients aren’t inclined to go there. Some would suggest other non-DMD treatments.
All that said, based simply on the information you’ve provided here, just one relapse in the first 18 months, I’m not sure I’d call Copaxone a failure yet.
Even on copaxone you will still have relapses Just not as often. If. This is not working for you then other drugs are an option. I am sitting in the infusion center as I type is having just completed my first round of tysabri. the coax one was no longer agreeing with my body. I chose to go very aggressive with tx to see if this will work. The plus was I am jc virus negative and virtually no pml risk involved. Sorry for the typos. This iPad keyboard is a pain to type on.
Good luck with the next tests
I'd personally be of the opinion that one exacerbation after 18 months of therapy isn't necessarily a bad record. Of course you don't know what might have happened if you hadn't been on a DMD at all.
If I recall correctly, you were diagnosed toward the end of an original and more or less continual period of time with symptoms that multiplied and progressed. I'd just argue that one relapse does not a failure make. Now if my memory's wrong than my opinion might change too (as if that matters anyway, lol).
Just thought I'd play the 'conservative' side and suggest that if you've had no issues with Copaxone otherwise you may want to give it a little longer to establish a good track record. You may be willing to go back later but if a second drug 'fails' is either doc likely to agree going 'backwards' is wise?
Just another idea. There may be lots of new stuff in the pipeline but we never know how fast its flowing or how quickly we'll blow through the current possibilities. Besides, I'd personally rather be on an immunomodulator than an immunosuppessant if I had a bunch of monkeys around who tote school bugs home in their backpacks.
Please be sure to let us know what the consultant thinks.
Mary was reading my mind, I was thinking exactly the same thing. None of the DMDs guarantee no relapses; on average they should reduce them by 1/3. Some will see their relapses reduced by my more than this amount; some by less; some not at all. After 1.5 years it seems like it might be premature to make a change. They should be looking at not just the fact that you had a recent relapse, but the severity of it (since DMDs ideally reduce not just the frequency but also severity of relapses), your EDSS/present functioning (once you've recovered from this past relapse, are you doing substantially worse than you were before) and your MRI (is it substantially worse than before).
It's possible that you might do better on another med, but I would urge you to ask the above questions of your MS specialist. I remember my neuro saying to me early on that I needed to have realistic expectations of Copaxone and try not to get demoralized by a new relapse but to keep it in perspective in terms of how I was doing previously. My relapses did reduce from three in slightly over one year, to one in nearly three years so although my GP suggested maybe I should change my treatment with the last relapse, I agreed with my neuro not to do so at this time.
It is a conundrum for sure, you don't want to be more aggressive than necessary due to the potency of the drugs, but you don't want to look back and wished you'd been more aggressive when it would have made a positive difference. Any change should be carefully considered. Good luck and keep us posted.
I don't know the answer to your question and agree that you should talk to your neuro. I have heard that there is not consensus among neuros about how to decide when to change therapy so I don't think it's clear cut. I just thought I'd point out this study that suggests that there is a good chance that changing drugs will help if you are having a suboptimal response.
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