Hello all. I read many of the posts here, but don't typically post myself. I do have a question today. I have been reading about studies that show that when one gets older, DMTs may no longer be necessary for MS. I am turning 65 next month, and at my last visit with my neurologist, I brought this up (about 6 months ago). She was fairly noncommital with her response and I plan on talking to her more about this at my next visit in a couple of weeks. There is also a financial factor that is about to come into play- the insurance I have which luckily covers the cost of my generic Copaxone, will no longer cover me once I am on Medicare (November for me). The cost, even with a prescription plan, will be unaffordable. Anyone discontinued their DMT once they reached a certain age?
Stopping DMTs after age 65?: Hello all. I... - My MSAA Community
Stopping DMTs after age 65?
Hello! Good post. I stopped my dmt’s at age 55. It was a great decision for me. I realize that everyone is different and has different needs, but I actually started doing better when I got off the medications completely. It seemed to take a long time to get through the “wash out “ period or getting them out of my system. I’m now 61 and doing better than ever. I wish you the very best in your decision. Keep us posted! Kelly
I began a DMT at 61 and stayed on it for 3 years, then after a few years resumed with another DMT and stayed on it for nearly 3 years. Then I heard of the idea that people over a certain age who had had SPMS for many years probably weren't getting any benefit from the DMTs, and so I stopped mine for 10 years. But COVID came along, and there just a tiny bit of evidence that some of the DMTs offer some protection against COVID. So I've been back on a DMT (generic Copaxone) for the last couple of years, gambling that it just might be doing some good. If I had to pay for it, I wouldn't. Medicare/Medicaid has always covered every penny of the DMTs, amazingly.
I was diagnosed at 70. None of the seven neurologists I've seen has ever been willing to prescribe a DMT for me. To explain this, most research is conducted on a younger population, and most clinical trials eliminate those over 55 so little is known about how DMTs affect an older subset. There are forum participants who are seniors on DMTs. I hope they will respond to answer your question.
Dont know much about stopping when older but im 45 and on medicare and I get Copaxone with a zero dollar copay. MS drugs should always qualify for a zero dollar copay through "nonprofits" on medicare.
I was on DMTs when first diagnosed with RRMS in my fifties. I felt that the treatment was worse than the disease. My neurologist agreed with my choice at first but then began “pushing” me to go back on DMTs even though there were no new lesions or relapses. I changed neurologist ( for a different reason) and 2 doctors in the new practice recommended not to start them again. One of the reasons they gave was that most DMTs weaken the immune system and as we age make us less likely to fight infections.
This is basically me, too. I've had MS most of my life but couldn't get a diagnosis until a few years ago. My neuro did have me try Ocrevus, but he felt that I was far enough along that nothing would help. I dropped it after the first two half-doses and don't regret it. I'm still monitored regularly and did get a steroid infusion last year for an expected exacerbation, but other than that I've done fine on my own.
Very good info, I didn't think of that, that it lowers immune system and being older. But, 60s are the 50s now a days. In our 60s we're not like previous generations. We're living longer. So some of the thoughts may no longer apply. Thats what im hoping. The Aubagio doesn't affect me negatively and they cover co pay. elaineinqueens many pharma companies pay the co pay. They didn't ask me about income or qualifying.
the pharmaceuticals are not allowed to provide co-pay assistance once a patient is on a gov't insurance, such as Medicare. It is a ridiculous rule and I brought it up to my Congresswoman years ago, but it went nowhere. As for stopping DMTs in older patients, I think the current studies are showing that if a patient is stable, the DMTs don't really do much past a certain age since inflammation (supposedly) goes down as one ages.
Didn't realize all of this. But I think I'll stick with it until I get adverse effects. Good luck on your decision. Only you know what works best for you.
Humbrd I have been on O for six years now and each year I’m feeling a little better overall. Of course this is the only DMT I have been on so I can’t compare it to anything.
I will attest that I felt better before any DMT’s, but I was obviously accumulating lesions and disability bc I hadn’t been diagnosed yet (41) Personally, I would be hesitant to stop them, unless there was a valid medical reason to because I already lost all that time living w ms before I was diagnosed.
I appreciate all the responses to my post! Thank you! I will keep you all posted as to how it goes when I go off the generic Copaxone. Sadly, I do not qualify for any of the programs out there that would pay for it, but that does not mean I can afford it, so that will be one of the major factors in stopping it.
The PAN Foundation helps with co pays for DMT's. They have always helped me pay for my medication with Medicare and Part D. Hope they can help you. panapply.org
I would be so afraid to stop. I have a year and a half to go but my fear is it would all start back up again. I'm pretty stable now and want to keep it that way!
Exactly. If theres no problem with taking it, then why stop now.
Hello Elaine in queens. In a little over two years the bill that president Biden just signed will limit your out of pocket max to $2000.00 a year for all prescription drugs so until then???. Are you sure you won’t qualify? I think the qualifications have been relaxed somewhat. One of the best foundations is the assistance fund. As far as I know they do not look at assets just yearly income. Just for the the heck of it I went on the website and entered $70,000 for one person and qualified. It might be worth a second look. Good luck
PS: our first apartment was in Kew Gardens
I just went to that website that you mentioned and do not qualify for any assistance. Our current income is my husband's NYPD pension plus his current job as a court security officer for the federal court, so do not qualify. Of course with all of our expenses, this does not mean I can afford the DMT, but that is the way it is. 
Elaine, have you talked to the drug company? They have assistance programs( be sure to mention your husband is a retired police officer. A lot of people have kind feelings for veterans and police officers) advise them their medicine is effective and you are trying to hang on until January 2025. They just might ask you how much co pay you can afford and go along with it. They are still getting a big chunk from the insurance company.
Thank you for that advice. I will definitely try that out. My "Part D" prescription will continue to be through my husband's detective's union. Since it is way smaller than the police officer's union, they have a limit for families that they will pay out each year. It is $15,000. I don't know how that will play out with the very expensive glatirimar acetate? It is very likely that after a few months it will max out - and that's for both of us. I may need to purchase my own part D, and that becomes another monthly expense. I really hope that the bill that President Biden signed will be going into effect, that will change everything for so many people!!
Elaine, if I understand correctly you have co pay insurance up to fifteen thousand??? That should cover your MS co pays for a year. My wife’s co pays run about $1100.00 a month for the first five months then about $200.00 for the rest of the year. Maybe your husbands insurance is better then UHC.
That $15,000 annually is what our prescription insurance will pay in total, the co-pays are our responsibility.
Oh, that’s a big difference, especially with MS drugs. When you are on part D with Medicare the drug companies will not offer any help due to a court case that went against them. I believe they will help if you do not involve your part D insurance company. It wouldn’t hurt to give them a call and ask for guidance, you never know. I would suggest you tell them up front that you understand you cannot go through your insurance company but without help you cannot continue treatment and you are afraid to be off the meds for two years until it becomes affordable. The company can’t help if you don’t ask. I wish you all the best Elaine.
Bob
Hi elaineinqueens MSAA just came out with this, Study: DMT adherence associated with significantly increased odds of survival, checck out the whole article here.. mymsaa.org/news/whats-new-i...
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Hi elaineinqueens, also try the HealthWell foundation.
Thank you, I will definitely check that out!
Hi Elaine ! I am 70 and have been on copaxone for about 15 years. Last year I had a severe flare of trigeminal neuralgia that was controlled by meds I couldn’t get in to see my neurologist for 4 months because he had no openings so I decided to try to find a neurologist who was more accessible. After changing neurologist I had an acute flare of optic neuritis which left me with double vision with chronic pain behind my eye. Long story short my new neurologist encouraged me to stop my DMT due to the study that indicated older people don’t need a DMT (even though I had 2 bad flares within 6 months.). I stopped my Copaxone, not because of “the study “ but because I didn’t think it was working. The Neuro I was seeing when I had the ON flare wouldn’t do an MRI because she said it wasn’t necessary. I changed neurologist again and my new neurologist doesn’t specialize in MS, but also recommended stopping the DMT. I really think you need to make the decision about whether to stop your DMT on your personal experience and not some “study”. If I hadn’t had the 2 flare ups I probably would’ve continued the Copaxone, but since had the flares I felt the copaxone wasn’t doing any good s why continue to waste all that money. I’m currently considering switching to another neurologist who does specialize in MS to see if there’s anything that can be done about my ongoing double vision and eye pain. I know this was a long drawn out reply but bottom line is I feel that you need to base your decision to stop DMTs on your gut feeling and not some “study “. Getting old sucks but getting old with MS feels like a full time job! I hope your experience goes easier than mine has.
Littledeer I'm sorry you have has these flare-ups and difficulty getting the right neurologist. Are there any MS centers near where you are located? If not, you are definitely right that having a neuro who specializes in MS would be what you need. As for stopping the DMT, I agree, sometimes you just need to go with your gut - you know your body better than any doctor! I myself have just about stopped, but right now it is due largely to an insurance issue that has left me without having my Copaxone covered for a few months now. I have been rationing out what I have left until the insurance starts again, sometimes only having 1 instea of 3 doses per week, and sometimes skipping it altogether. I really don't perceive a great difference in my symptoms and my most recent MRI (a week ago) showed no new lesions. Go figure!
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