Hello M.S. family. I haven't written in a few months, but I have been reading posts to keep up with everyone. It's been a pretty rough time for me. At the end of March, my mom passed away, and I have just been reeling. My grief has left me exhausted, numb, and feeling like I'm in a fog. The depression hit me hard, but it is getting a bit better, and I finally feel like I can sit down and write in full sentences again.
While I have been dealing with my mom's loss and serious depression, I have been dealing with an issue regarding DMT's. I did see a few posts in the last few days about aging and whether or not to stop. Of course I know that everyone is different and we each have to decide what is best for us, but I feel overwhelmed and just need to get my story out. Maybe writing it out will help. I have been on several different DMT's over 23 years. Been on Avonex, Rebif, Copaxone, Tecfidera, Vumerity, and Kesimpta. Each drug had its pros and cons, some side effects were more bearable than others. The Kesimpta, which I hoped would work for me, made me very sick and I stopped after six months. I just tried the dimethyl fumarate (generic Tecfidera) which made me break out in severe hives. So right now I am on no drugs and must say I feel really good being drug free. My neurologist feels that she wants me on a DMT for at least a few more years (I am 64). My MRI's have been stable for years, and although I need a walker to get around, I feel like I'm doing ok and told my neuro that I am ready to seriously think about stopping meds altogether.
I have done a lot of research about aging and M.S. It makes sense to me that as we age our immune system slows down some, and for some M.S.ers, stopping therapy is a viable option. Here's my dilemma: I really want to stop therapy, but I get nervous about stopping as well. So, there's my story. I am leaning towards stopping and rolling the dice, but it is a bit scary. But living with M.S. is scary no matter what.
I thank you if you made it this far and read my entire post. I actually feel better having written it all out, knowing that you are on the other end listening to me. I am grateful to you all. Looking forward to any thoughts, comments and feedback. Take care everyone.
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I'm so sorry for the loss of your mother. My grandmother once told me that it's something you never truly get over; you just wait for time to ease the pain.
They tried me on Ocrevus when I was first diagnosed, but after the side effects from just the first two half-doses I decided to drop it and don't regret the decision. If I was younger, I might have been willing to try something else.
I can't offer any advice for this. It's going to be a gamble either way. If it was me, I'd say to drop them and just see what happens.
Thank you for your thoughful reply. I am really leaning toward stopping the drugs at this point. I feel like the side effects are worse than the benefits I may or may not get from them. I do have an appt with my neuro next month, and will discuss it with her. I only know that after 23 years of several DMT's, it feels good to be on a drug holiday. Take care.
I’m sorry for your loss and hope you feel better soon. I’m 66 and was on copaxone and then aubagio for 16 years. This March ,on the advice of my neurologist after having 2 infections I stopped all meds. I feel great and so far no problems have happened. I had been reading the research and from what my neurologist told me the meds aren’t offering much protection for people over 55 . The risks of the meds are more than benefits for me. I will have a repeat mri in a year and decide if another med is needed, as long as I don’t develop problems. It’s a little scary being off meds but I feel 20 years younger!!
Thanks so much. I have read that research too. I feel like the risks outweigh the benefits at this point. I also know that I feel better off the drugs than on them. Glad you're doing so well. Take care.
I’m so sorry for your loss. I hope you have people to support you, both with your grieving as well as with your medical decision.
I’m 58 and have been on 6 different DMT’s since 1999. I’m currently on Ocrevus and have had no side effects since my first year on it (nothing significant/unmanageable in the way of side effects during the first year ) and have had no progression on my MRIs. I feel really cautious about rolling the dice and seeing what happens if I were to stop in my 60s. The MSAA magazine has recently had two editions on aging with MS and this question has come up. The studies that were mentioned provided conflicting results (of course, isn’t that the way we search goes?). Here’s what’s always in the back of my mind -my mother died of MS in her mid-60s. The last 10 years of her life, she was a quadriplegic. Of course, she didn’t have the benefit of any DMTs because they weren’t available back then. I’ve always said to myself I’m going to take full advantage of anything that’s available to potentially help me stay as long as possible. (just sharing my perspective, not intending to sound like on lecturing). I neurologist said we most likely will visit the issue of whether I should stop O as I go through my 60s.
I wish you all the best and hope you start feeling stronger soon.
Thank you so much for sharing. I read those articles in the MSAA magazine too. They were very informative, but as you point out, different research yields different results. So glad to hear the Ocrevus is working for you! All the best!
I am terribly sorry for the loss of your mother… After I lost my mother in 2015 I had a severe depression as well… Even had a little stent in the hospital.. even after having MS for so many years I had never had any appreciable depression. I’m very stable from that now although they told me I would have to be on an antidepressant for the rest of my life it’s very light, so it’s really no big deal. I was on Avonex for 19 years, and since I’ve retired, they put me on Aubagio.. it’s been two years and except for some hair loss in the beginning, which was freaky, although not anything like the side effects that I was having from Avonex the entire time I was on it! It has been really good… My progression of disability has increased since about the beginning of 2020 after a severe tripping injury that put me in a boot… I had no idea I had bilateral foot drop at the time. My disability seems to have stabilized as I am working really hard at the gym in aqua classes and I’m getting around pretty much with just a cane. I go for my brain and cervical spine MRI’s today so we’ll see what that shows. Unless I have new lesions, my doc is cool with letting me stay on the Aubagio.. I don’t know if you’re able to do some gentle exercise, but between being on the antidepressant, and having the endorphins from the exercise that has been what has carried me through so much! Having people to talk to about how you’re feeling is truly critical and being able to get through. My doctor told me I basically had the perfect storm as we had had multiple losses of family members and close friends before my mother passed, and I have never been able to take the time to fully grieve, apparently Grief can be cumulative.
Thank you so much. I hope your MRI appt went well. I have just started a little gentle stretching and moving and in just a few days, I feel it is making a positive difference. Glad to hear the Aubagio is working for you. Take care.
I am glad to report.. NO NEW LESIONS!! My doc called me tonight at 9:40 pm to let me know..this marks my second full year on Aubagio.. because it wasn’t making me sick like the Avonex did for all those years… I was really concerned as to whether it was working or not. So happy you were able to move around a little bit more… It can make such a difference in how you feel overall..
Welcome back! I have heard that as we age our brain shrinks. I think it does have an impact on MS symptoms - but I don't know how or what symptoms are affected.
Good morning and yes that’s a big question to quit or not 🤷♂️ I have been on seven different DMT’s over the 28 years of MS. I had been pretty stable since I was 50 years old with slow reclined. At age 62 my MS specialist in Boise Idaho had mentioned that he didn’t think that the DMT was doing much anymore and mentioned going off meds🤷♂️ He was happy to go either way it was my decision to make. I made appointment with my last MS specialist in Pocatello Idaho and she had the same opinion on DMT’s and also mentioned there was no evidence on quitting meds so it was my decision. After a year I decided I wanted to get off meds and take my chance. I had 3 months of Aubiago when I quit so I had enough to go back on without waiting for approval again. So I have been four years now without any DMT and my last MRI a month ago was still stable. I still have the same disability as before and it seems to have the same slow progression 🤞🏼. For me it has worked out well but remember we are all different. I also have a friend of mine that has had MS for 36 years and was on Copaxone for 22 years. She decided to quit doing DMT and did ok for about a year and now she’s having more problems and her neurologist wants her back on a DMT but she refused 🤷♂️ She is 75 years young and said she just doesn’t want to due it anymore and is going to take life as it comes. She has been wheelchair bound for the last 12 years and also home bound and is content with her lifestyle 🤷♂️ Surprisingly she is a retired RN. Don’t know if this helps but good luck on decision 🙏👍🏼😉
Hi Kenu, thanks for sharing your story. I agree with you. I have a feeling that there comes a point that the DMT's risks outweigh the benefits for some people. After 23 years on seven different therapies, I think I'm ready to be drug free. Sounds like it was definitely the right decision for you! All the best to you.
My heart goes out to you on the loss of your mother. I lost my mother also and couldn't believe the emotions that I went through.
I have been very fortunate with all my DMT's. I have had no real reactions other than injection redness or soreness. I think after awhile your body gets used to whatever your taking, as with any drug you eventually build up a tolerance. I am currently receiving Ocrevus infusions. I have not had any problems and I love only having to do it twice a year. I am 62 years old and I have had MS since I was 29. I suffer with bouts of vertigo and my eyesight is a deteriorating, but in the long run I have been blessed.
I pray that you find what works for you. I know how easy it is to just give up and deal with whatever comes, I've been there, but it can get better. Hang in there. 😊
I had bad reactions to my first two meds and have been on Aubagio for... 7(?) years now. I am 64 and hope when I go on Medicare next year it will still be covered as I don't want to stop it.
I have lost both my parents. It was super hard, so I understand. I have been on antidepressants since I was around 30 (64 now) so they may have helped me through it. My mom was 98 with severe dementia so that actually made it easier. She really didn't have a life anymore.
Give yourself time and grace. So sorry for your loss.
Thank you so much. I appreciate your kind words. Glad the Aubagio works for you. If Medicare won't cover it for you, contact the pharmaceutical company and inquire about their financial assistance program. All the best to you!
The pharmaceutical company already helps, especially with the 1st dose. Every January I hit my OOP and deductible because it's so expensive! But I get help with it so it works.
Hi mrsmike9, I just wanted to pass this info along to you. Are you familiar with Mark Cuban's costplusdrugs online pharmacy? You may want to have a look. They have generic Aubagio available at very low prices, and because they are a cash business, you don't have to worry about insurance or any OOP or deductibles.
I lost my grandmother who was more of a mom in my early years than my mom 45 years ago & I can’t speak of her without breaking down so I know there is no real comfort. I feel your grief. I remember how lucky I was to have her for the time I did.
Only you know what feels best for you regarding treatment. I can relate about being scared. For me, so much damage was done prior to dx, I’m stable now but if I stopped or changed tx, am I one new lesion away from disaster?
In my recent update I’ve only gotten where I am bc I am not afraid to speak up and/or disagree when I feel it’s necessary. If I followed all advice, I’d be a zombie. It’s a struggle but it’s MY struggle. Most people I believe do their best to try to help but they don’t live it.
I suggest you sit with it and see what you tell you.
Thank you. Those are truly words of wisdom-it's my struggle and my decision whether or not to continue therapy. My gut will guide me. All the best to you.
I'm sorry you've suffered the loss of your mom and are dealing with depression. On top of MS, that's a lot to handle.
I did stop the only DMT I have been on, Copaxone, about a year ago. I ran out of places to inject, but was also just plain tired of injections, though they were only 3 times a week. I was very sick and tired of dealing with drug companies, insurance, and pharmacies after spending the bulk of a short "vacation" visiting my kids and grandkids in another state on the phone with all of those entities.
I think I would have continued with some sort of DMT if I was seeing relapses and greatly worsening symptoms. I am 63 and just prayed a lot about it, talked with my husband, and discussed it briefly with my neurologist. I have not had a relapse in about 6 years.
That may not be the best decision for you, but I feel it has been best for me. I wish you the best with your decision and with your grieving process.
Thank you so much for your post. I really get it with the years of injectables getting tiring. I did Avonex for several years and two years of Copaxone. I'm grateful they were effective, but I did take needle holidays periodically! And dealing with all the financial stuff was awful. I'm glad to hear that you are doing so well without the DMT. All the best to you. Take care.
I have been on Avonex from day 1, at least 20 years, maybe 30. I'll be 75 in December I'm very independent so I'm apprehensive to stop. I'm lucky as I have an RN member that administers the weekly injection. If I had to do it, I'd stopped years ago. Sorry for your loss, I was 10 when my mother died. My dad was non-existent. whatever decision you make is the correct one for you.
I am on Aubagio, started with Avonex but it messed with my thyroid after using it about 2 years, then on Tecfidera and then it messed with my blood counts, so I have been on Aubagio for a few years, seems ok.
I am sorry for what you have been going through. For me the loss of my mom was visceral. My sister came up with that word to describe what we had never experienced before. I am 68 and was diagnosed when I was 29. I have been very fortunate even though there were no drugs back then. I started betaseron after an MRI in 2006 showed new lesions. After a couple of years I switched to avonex and was on it until 12 weeks ago. A new neurologist told me at my age and stability shown on MRIs she would be fine if I went off medication. I went on a short trip and forgot to take it when I got home and just sort of fell into staying off it. Then I googled and found the age thing is a bit controversial. Now I am nervous and also feel less stable on my feet. This is not a good thing as I have severe osteoporosis with a couple of spinal fractures. But I have more energy! I wonder if age also means my body is less able to compensate, thus more symptoms. I am waiting and watching a bit longer, but this is a very scary decision. Good luck to you.
Thank you so much for sharing. I also have osteoporosis which makes being off balance interesting. Good luck on your journey of being off therapy. It is definitely a wait and see kind of thing. All the best to you.
I am sorry to hear of the loss of your mother. Perhaps grief is not the best companion for making big decisions. I had a horrid time with Kesimpta and was done with all meds forever myself. After some recovery time, my gut instinct was that Mavenclad was worth a shot at more safely trying to exit the medication circus at my age. I wish you all the best 🙏
Hi kdali, and thank you. If you recall, I had posted in March asking about Kesimpta side effects and you replied with the horror story of your experience with it. Mine wasn't any better, and after 6 long months on it, I quit. I am finally at a point where I feel like the drug side effects and risks are outweighing the benefits, so I think I'm going to give my 64 year old body a good long break from meds. Fingers crossed! Take care.
I remember! I choose being able to function also, and so far my gut feeling is serving me well. I hope the next few months bring you some peace and healing 🙏
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