How do you know when it is time to change meds?

[Boymom123]

I haven't posted here in a long time. I was diagnosed almost 4 years ago. My symptoms are minor - vibrations in legs mostly. I get a little tired on occasion, but as long as I exercise, get 8 hours of sleep and eat ok, I am doing fine. My MRI's have been stable since diagnosis. I go for my next one in March.

I have been on Copaxone since the start. I now have 4 spots where my fat layer is gone and have indents in my skin. I have switched up (with my dr's ok) my injection spots, but sometimes get huge bruises that take a week or so to go away.

I know this is not a big deal. I don't care about the my "divots", but I feel like maybe I am getting needle fatigue. I know this med has virtually no side effects and seems to be doing its job. Am I being a big baby for considering switching? So many other meds have side effects that I am hesitant. Should I just suck it up and keep going with a medication that really seems to be working?

I may just need a "snap out of it" smack. I realize that I am in a very good place and have it much better than many others.

THanks.

[gargantua]

Administration

I feel like maybe I am getting needle fatigue. I know this med has virtually no side effects and seems to be doing its job. Am I being a big baby for considering switching? So many other meds have side effects that I am hesitant. Should I just suck it up and keep going with a medication that really seems to be working?

For my first DMT we'd discussed Copaxone, but when I sat down with him again to verify he was considering my entire history, we chose Tysabri. At this early stage, any concerns about PML risk are offset by my happiness that the monthly administration is done by someone else. A naive silver lining perhaps, but why can't you weigh issues of administration after all this time? Maybe if you are doing fine, your neurologist will run interference. But it's honest and forthright to ask the question.

[Jules A]

Excellent question and I am right there with ya. I've been on Copaxone approx 14 years and it has been a good medication, I think?, for me. The craters in my thighs/butt are sad but I don't have anything else in the way of side effects so I'm ignoring them. My MRIs are stable and I have minor symptoms like you.

My MS specialist says there is no reason I should even consider changing medications at this time believing that this has been an excellent fit and there is no reason to rock the boat. I agree, despite knowing there are medications shown to have somewhat better track records. I also like Copaxone's longevity.

Long story longer, my strategy will be stay with Copaxone until I have a significant change in presentation or MRI with the understanding that function lost might not return. Crossing my fingers that will be a long time away. Best of luck with whatever you decide.

[MyGirlsMom]

Boymom123, I was on Copaxone for almost 8 years and yes, stopped due to needle fatigue and lack of injection sites. My challenge was trying to put a needle in and it would hurt and not go in...the sensation made me nauseous and finally I just had to stop. I have been off DMT since 2017 but am seriously considering Ocvrevus. Trying to get some constipation issues resolved first before adding a new drug.

As far as when to change, Gee...I wish I knew and I wish the docs knew too. This is a very hard piece of the disease and everyone, including our doctors, seem to have different perspectives. Hang in there!!

[Marco]

Many neurologists use the “RPM” scale to determine the effectiveness of your DMT for you. RPM stands for Relapses, Progression and MRI. In general, your current RPM situation will be compared to your past medical history (or baseline).

Needle fatigue is a reality for a significant number of patients. That's one of the primary reasons Copaxone, Rebif, Betaseron and Avonex (CRAB) patients switched to oral medications once they became available. So you are not being a baby, especially if you start missing doses due to needle fatigue. That's when it's definitely time to switch to a medication that you can adhere to the dosing schedule. Are you taking Copaxone-20 or Copaxone-40?

As far as Copaxone doing it's job. You cannot have fewer relapses than zero, so if you aren't having relapses that's a wonderful thing. Stable MRIs? Even better. No progression. Welcome to NEDA (no evidence of disease activity) a state that all MS patients would be blessed to be in. Achieving NEDA is uncommon with Copaxone because it's one of the medications with the lowest efficacy ratings (statistically speaking). That doesn't mean everyone should dump Copaxone, but there are a number of medications that are statistically "better" at preventing MS-related damage.

Also note, that while many medications have a slew of listed side effects not every patient gets them. I am on rituximab and have zero side effects, get two infusions per year and have 363 days without worrying about taking any medications. Rituximab (used off-label, but quite similar to Ocrelizumab) is also considered to be one of the medications with a much higher efficacy than Copaxone (on average).

The beauty of 2019, is you have many more medication options than we had 10 or even 5 years ago. If you're seriously tired of the needle talk to your neurologist about switching medications. Please let us know what you decide.

I wish you well..