I am 71 with secondary progressive MS, diagnosed at 31. My neurologist, is a MS specialist practicing at Dartmouth University Hospital. The discussion regarding continuing MS modifying medication included information gathered from a recent MRI, disability scale, review of all my other medications and other medical diagnoses. Taking the lead in the decision to stop the disease modifying drug was the absence of active or new lesions. I have off any MS modifying drugs for three years and my MS remains stable. I am evaluated with a neurological exam and MRI when and if a symptom appears that I question to be MS related. I hope this helps.

Well, I am 72 years old with Secondary Progressive MS. My neurologist who had treated me for 15 years, suddenly overhauled his practice. He was being reimbursed so poorly from BCBS, that he could no longer accept those patients. I was devastated. We were traveling about 1 and 1/2 hours to see him, because there was no MS specialist where we live. Then my PCP recommended a local neurologist, but she did not feel qualified to see me. The PCP recommended another local neurologist who did have specialized MS training. She said she would see me if I would agree to a trial off Ocrevus, the DMT (Disease Modifying Therapy) that I was on. At first this really upset me, but having no other options, eventually I agreed to hear her out. It turns out that she was really brilliant, and explained that the research seemed to be showing that the risks of DMTs exceeded the benefits in individuals with MS over the age of 55. I presented to her at my current age of 72. My previous neurologist said, the guideline only applies to those whose MS was stable, and mine was still active. I liked the new neurologist, and was so impressed with her, that I agreed to go off Ocrevus as a trial. At my second visit, with her, I was doing pretty well. It was at that visit that she informed us that she was leaving the practice in our local hospital, and would be doing virtual visits for some company. So once again, I have no MS neurologist. This time my PCP referred me to a local neurologist that I already see for my complex sleep apnea. He is not an MS specialist. We had tried three previous times to request that he see me for MS, and got no reply. When the PCP referred me to him several months after our attempts, his office called and gave us an appointment for six months from the time of referral. So I'm just hanging out here. If you go to the National MS Society's website, I'm sure they have information on stopping treatment after a certain age if your MS is stable. The last time I looked, they aren't really sure yet, but need more research to determine if truly the risk of the DMTs, outweighs the benefits they offer in older people whose MS is stable. After waiting so long to be diagnosed, so you could find help through DMTs, it feels unnatural to stop treatment. Advocate for more money to find a cure! It won't be in my lifetime, but it might be in many of the folks in this group. Apologies that this is so long.

My neurologist told me that tomorrow might be my last infusion DMD as during the pandemic I had 1 infusion 18 months after the last one and the June 21,2023 is also approximately 18 months from my last and I have not had an exacerbation in over 5 years. I’m an Registered Nurse so I will be charting my condition/symptoms/and anything that is differences with my current status of health, I will be on the phone to her or into urgent care or the ER for care. I have done some research and they are saying not all flare ups require treatment other research says to avoid triggers could help to prevent a flare-up. I will continue to research flare-ups, symptoms and changes in me and research that is being done.

I read somewhere online about a woman who was told by her neuro to stop taking DMD when she turned 65. Shortly after that she had a major relapse. She was moving to a nursing home because of it!

I was diagnosed at 62, but I had had it for many years prior. The neurologist didn't put me on meds as 62 is about when they take people off meds.