Hi again, I previously asked whether Aubagio was my next best option. Well, after 5 weeks and further symptoms that hasn't worked out for me either. So that's Copaxone, Rebif, Cytoxan, Tysabri, Rituxan, Plasmapheresis, monthly steroids, Copaxone again, Tecfidera & Aubagio I've tried thus far, none working for me as I continued to progress over the last 20yrs. If I were your patient, now considered Progressive-Relapsing, where would you suggest I go from here? A friend of mine is stable on Methotrexate-similarly disabled as me and has tried everything. I had marked progression on Rituxan & the 2 orals. I am in a scooter full time & as of the past year mostly unable to go anywhere but doctor's appointments. Any further progression & I will be unable to care for myself/live independently. Any advice is appreciated! (I see my MS Specialist neuro next week). Help!!
I'm sorry to hear of your difficulties with the MS despite the various therapeutics you have tried.
I think it is important to keep in mind that all of the disease modifying therapies (DMTs) are partially effective. Sometimes we get lucky and a patient's disease seems to go into a long-lasting remission after going on a DMT. When this happens, it may be that the DMT chosen is a near "perfect fit" for the individuals type of MS, or it was a coincidence and their MS was going to quiet down anyway. However, for many patients, we do expect to see some breakthrough disease activity, even on a good DMT. Therefore, reasonable expectations for the DMTs must be understood.
I also think it is worth noting that the DMTs don't necessarily exert their full influence immediately, but can take some time (on the order of months). I would hesitate on labeling any DMT as a failure based on symptoms that started shortly after initiating the DMT.
Lastly, the indication for a DMT (in my mind) is evidence of inflammatory disease activity (ie, confirmed MS relapse, new or enlarging lesions on the MRI, or contrast enhancing lesions). Unfortunately, there is no proven therapy for patients who have transitioned from the relapsing/inflammatory phase of the disease to the progressive phase.
I do share your concern about progression and doing everything possible to retain as much of that as possible (with the end goal of retaining independent function). If your neurologist feels that you are still in the inflammatory phase of the disease (ie, you could still benefit from a DMT), then there is the new biologic (Lemtrada). Patients in the studies of Lemtrada who received this demonstrated an attenuated progression of disability compared to Avonex. This drug is not something to take lightly as it has a significant risk of autoimmune disorders associated with it.
If your neurologist feels that you are no longer in the inflammatory phase of the disease, then a focus on rehabilitative medicine and occupation therapy to maximize functional independence is warranted (this can be used in addition to DMTs as well).
I hope this helps.
A. Scott Nielsen MD MMSc
Virginia Mason Multiple Sclerosis Center