Still confused. You are saying I cannot have a relapse over the age 60? Once I was told there have been no studies on ms patients my age (60's) and now I read you can't have a relapse over age 60, so now I'm wondering why I would even have to take any DMT? I think I should just throw in the towel and take my chances. I only worry about my cognitive issues that have gotten worse. They also say I have more lesions that have developed after age 60. I have had several MRI's, seen 2 specialists with all the blood work to eliminate anything else and spinal tap as well. They all say I have MS.
I had to go off of Aubagio because it "caused" high blood pressure and I am still being treated for that. I never had high blood pressure before that medicine (except when I had an aneurysm in 2015). I'm just reading contradicting information. One says no DMT and others tell me I should. I have been on several that have not worked. Been on Rebif (caused liver issue), Gilenya, Copaxone and then Aubagio. I wonder if my ms progressed because of aneurysm. I was in hospital for 2 months and on no DMT and never went back on Copaxone after that. I just don't know what or who to believe. I worry so that my confusion and memory will get worse as I get older. So do I stop DMT's or not? And where is that blog that tells about people on DMT's at my age? I can't find that. Thank you.
Let’s try to focus on the individual questions you have posed to help with both your confusion and your frustration. Many of the questions you are asking are not related to one another.
1. Can you have MS relapses after the age of 65? The answer is yes BUT relapses become increasingly rare as you age. If people over the age of 60 experience relapses at a rate of once every 5 to 10 years, then it may not make sense to take a treatment solely to decrease the occurrence of relapses. Thankfully, many of the DMTs convincingly decrease the rate of disability progression. This affect on disability progression is more evident with the highly active DMTs including Natalizumab (Tysabri), Alemtuzumab (Lemtrada) and Ocrelizumab (Ocrevus) and probably Rituximab. This effect on disability progression is also noted with many of the oral DMTs.
2. Are MS DMTs effective in people over the age of 65 ? There is no evidence from randomized trials to support the use of DMTs over the age of 60, but there is also no reason to believe the DMTs would not be effective in this age group if an individual has a relapsing form of MS?
3. Is relapsing MS common over the age of 65? Relapsing MS is quite uncommon over the age of 65. In fact less than 10% of MS patients are over the age of 65 and most of these patients have progressive MS (more than 2/3’s) or longstanding stable MS. The average duration of symptomatic and diagnosed disease in people over age 65 is 20 to 25 years depending on the study. This means that most of these people experience their first symptoms of MS no later than their 40’s. This does not mean that MS never begins after the age of 60. It just means that this is not common.
4. If my disease is progressive can I still benefit from a DMT ? There is evidence that highly active DMTs, particularly Ocrelizumab and Rituximab, are effective in this stage of the disease, especially if you are younger (< 55) and there is evidence of recent inflammatory activity (relapse or new MRI lesions). This may also be true for Alemtuzumab but there is insufficient information from well designed studies. Natalizumab was not effective in progressive MS
5. Could my MS have worsened because of my cerebral aneurysm? I do not know enough about what happened to you to answer this question. If the aneurysm ruptured causing a subarachnoid hemorrhage, then the residual effects on your nervous system could be contributing to many of your symptoms. This does not mean that the aneurysm worsened your MS
6. Could persistent elevation of blood pressure be caused by Aubagio? Once the Aubagio is out of your system, your blood pressure should return to normal unless you have problems with high blood pressure that were only worsened by Aubagio.
I hope this helps with your decision making. Perhaps it would help if you clearly outline your goals of treatment with your current doctors. Remember, the DMTs can not reverse any permanent damage from MS and there could be many problems contributing to your complaints. Do you want to improve your cognitive function, your mood or your balance or all of the above? Staying goal directed will help since achieving any individual goal usually requires more than just a disease modifying therapy.
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
Professor of Clinical Neurosciences
University of California San Diego