I haven't been seen by a neurologist for a couple of years after stopping Copaxone. I've enjoyed not being tied to a medication and especially not dealing with insurance and specialty pharmacies (horrors!). My PCP ordered an MRI which showed a new lesion, probably explaining my balance being a bit worse and some new arm weakness. There are no neurologists available locally, so I have to see one out of town. He "has an interest" in MS, but his reviews are rather mixed. I could ask to go back to Portland to the MS center there.
I am concerned that it may be suggested that I start a new DMT. I'm 64 now and have no injection sites left for subcutaneous injections. I won't do IM injections. I'm not thrilled with the idea of suppressing my immune system at my age.
You all have much more experience than I with various DMTs. Yes, I know I will need to discuss it with my new neurologist, but what are your thoughts? If you were in my position, what would you likely do? Thanks in advance. Yes, I'm just whining.
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As you know I stopped Copaxone and tried many different medications. Then I did mavenclad that worked well for me. It has a lot of side effects but I didn't have any really bad ones it's been over 2 years since I finished that and I am doing well. This medication is not for everyone so if you concider it really look into it. I am 66 now and if I have any more problems I will not go on any more medication. I don't think that I have any place left to do shots and I refuse to do infusion. The side effects of all these medications scare me. I hope for the best for you you are in my prayers
greaterexp so sorry to hear about your MRI and symptoms. Treatment decisions are so individual. When I tell my Neuro I don’t want anything to further suppress my immune system, she says she has nothing for me. I’m hoping for new DMTs with new mechanisms that are safer for older pwMS 🤞Maybe BTKIs? Maybe remyelination drugs? But I don’t have new lesions. So your situation has a different sense of urgency.
I also wonder new lesion or just not identified on your past MRI? Just thinking aloud 🤷♀️
Hi graterexp! MS flare ups really suck! I’m have been on copaxone for about 15 years now. I’ve always been afraid to change because I remember how awful the interferons made me feel. I changed neurologist this summer after having a trigeminal neuralgia flare and being told that the soonest I could get in to be see would be almost 4 months out. Luckily I got in to see an urgent care provider who had some knowledge about MS and agreed to order the RX I needed. I switched to an MS clinic closer to me but now probably going to go back to the other clinic. The new clinic seemed impressive on the website and the Neurologist seemed ok at the first visit but she told me she wanted me to go off of DMTs because I’m 70 and Copaxone isn’t a very effective med anyway. I told her I was scared to stop taking any DMTs and she agreed to continue Copaxone until next year and then get another MRI before stopping the Copaxone. Shortly after I saw her I had a really bad flare of optic neuritis. Luckily I was able to get a video appointment with her NP within a week and she ordered a course of steroids infusions which didn’t help at all. I was going through PT at the time and they suggested I ask for a referral to a Neuro ophthalmologist. I did that and the NP referred me to an Opthamoligist who said they would not refer to a neuro ophthalmologist, but they referred me to an eye surgeon who does eye re-alignment because I was having terrible pain and double vision. I have seen her twice now but so far there’s not much she can do but get me and temporary really strong prism lens to put on the right side of my glasses. The lens helps a little bit as long as I don’t do anything that requires moving my eyes around or moving around for more than 15 minutes because then the pain and double vision gets so bad that I have to just stop and sit with my eyes closed. That doctor got my records and couldn’t believe that the neurologist was recommending that I discontinued DMTs. She recommended that I go to my PCP and get a referral to a rheumatologist to make sure I don’t have some other autoimmune disorder causing the ON inflammation. I had sent a message to my Neurologist and asked for an MRI and she said that wouldn’t be helpful because I “ have had the ON for awhile “ and she told me to just go to my optometrist and get a new prism prescription. The eye specialist I’m seeing said that won’t work because my vision is still not stable because of the ongoing inflammation. Long story short I’m now thinking about going back to my old neurologist. This whole experience has made me think the new neurologist just doesn’t want to treat me because I’m old. I don’t like the copaxone injections but they are better than nothing. I may be old but I still have a life and would prefer not to have to just sit and do nothing because of the eye pain and vision problems. I’ve also started having neuropathy in my feet and hands. Sorry about the long rant but just tired of this whole thing. I’m tired of feeling like neurologist don’t have time for me and feeling like I’m just a bother! Again sorry for the rant but I don’t feel comfortable complaining to family and sometimes you just need to “let it out”. Anyway I hope you get the help that you need to avoid further damage and debility’s. Praying for god’s blessings to you!
Your experiences are worth a rant! That really sucks and I sure hope your old neurologist can do a better job for you. This is a hard disease, but I swear there are doctors that make it so much harder.☹️
Thanks for your support! Just sitting here being frustrated is just making things worse. Sometimes it helps just to know that someone out there is listening . Take care!
Gosh, hello Littledeer. I've only just in the last few months joined this site and I feel for you. You have made me look up trigeminal neuralgia, these past 4 weeks I have been having terrible pain on right side. It went away then I became stressed again and it reared it's ugly head, I'm not one for pain killers yet was taking them regularly that just took the edge of a bit, just want it to be gone for Christmas, well gone today lol. I thought because I was 55 I had been written off, my Neurologist who muddled me up with someone else, so have no confidence in him whatsoever, told me there is nothing they can do for me, I just have to live with it. It started beginning of the Pandemic when I lost my vision in my right eye and was told I had Optic Neuritis and had a VIP test I think it was called and was told that showed signs demyelinating disorder, then they wanted a lumbar puncture but because I was shielding and suffer already in my spine and didn't want it and it's like they don't want to know me anymore. I have told my GP when I'm ready I want to see another Neurologist, but this all makes me question, should I be having medication or just try to live with it and cope as I have been. I have to take steroids for another condition yet I feel they help it all a bit but been trying to reduce them slightly and just notice more pain everywhere.
I'm so glad you had your rant as you so called it, I never knew Neuralgia was linked to MS and you have made me question things. I have started taking a B complex which is meant to help with nerves and apparently there is a MS doctor in Australia I think, my friend gave me a link as she was in a wheelchair for a year and she tried his food diet (totally free) and she was able to walk again and go back to work, she is a Paramedic so is careful about false promises but she admits recently she started cheating with her diet and her pain all came back and she has had to take some time off again until she gets it back under control.
You do bother, it's just finding the right Neurologist that cares and hopefully you will. That's the really good thing about this site, you find you are not alone and there are good people out there that will try and help. Just take deep breaths as getting frustrated and stressed makes it all worse and take care and have a lovely Christmas and accept help from family, I'm learning to do that now and stop pretending I can do it all xxx
Hi loveducks! I take oxcarbazapine for trigeminal neuralgia flares. It’s actually a med for seizures but it works for trigeminal neuralgia as well. TN flares can be pretty terrible at times. The last one I had was the worst. It got so bad I couldn’t swallow or move my jaw. Most of the time I just have face and dental pain. I had a tooth pulled once because no one could figure out what was causing the pain in that area. That was before my MS dx. I have dental and facial pain often but it’s usually not real bad and Tylenol rest and staying cool. I’m pretty new to this site as well and have learned alot. I’ve never really talked to people about my MS. It’s usually easier deal with it by myself because trying to explain to someone else is too difficult and the explanation usually sounds bizarre, even to me. I find a lot of comfort in just reading posts on here and really don’t feel like I’m alone with this crazy stuff anymore . Hope you have a wonderful pain free (or at least manageable) Christmas!
Hi Littledear, thank you so much for replying to me, it's so kind of you. I have taken a screenshot and going to speak to my GP who thankfully is better than my Neurologist and going to ask about the Oxcarbazapine as I must admit I'm normally a tough cookie, no painkillers after a complete hip replacement yet this facial and dental pain is pretty awful. I don't leave the house due to getting a phobia from shielding so long due to Covid and my husband kept saying you really need to see a dentist, but I said it can't be all of my teeth, I can't have them all out I've only had 2 fillings in my life. Then I read your post today and it now all makes sense, so thank you so much.
I find humour and honesty helps, when I can't get my words out and just stutter like a good one or asked if I can repeat, it's no, try and guess lol, with family anyway. Then when I have a moment on the phone I just apologise and tell them I have MS and actually one company asked if it was ok to put it on my account, because I had to just stop her and tell her she was over loading me, my brain couldn't cope what she was trying to say and it's just changed the conversation completely, she went around it in a simpler way, was really kind making it so much easier.
Take care and I'm always here if you ever want to just chat xxx
hello - I am 58 and have been on six DMTs. My current one is Ocrevus - 2 times per year infusion. I injected daily and then 3 times per week for 15 years. I understand running out of areas to inject. My goal is to reduce the chances of additional lesions/activity as well as relapses. I'm currently on Ocrevus, plus methotrexate and prednisone (for a second autoimmune condition). I'm doing ok with all this immune suppression.
Sorry to hear of your new lesion. After having MS for thirty years now (dx at age 26 start tx at age 29 stopped Avonex at age 55 in March 2022 and switched to Aubagio April 2022).
Back in the day, it was commonplace to stop tx at age 65. But MS is a progressive neurodegenerative disease. Treatments are lifelong. MS is like a tattoo; it's always with you.
Yet I understand your concerns. Despite my hair thinning from both the Aubagio and Menopause, I highly recommend Aubagio. It is NOT an immune-suppressor drug. Aubagio is an immune-modulator treatment. Both the B and T cells are stopped from fully entering into the immune system.
Ocrevus is the "gold standard" treatment, but with the global pandemic (2020 to present) I did not want to leave my house to go to an infusion center for many hours, really? Nope.
But I've heard great things about Keisempta too (once-a-month injection) that is also a B-cell depleter. Fortunately, MSers have many options presently.
Regardless, MS Stinks. I'm sorry you've had break-through lesions into your mid-sixties. Best of luck navigating your next therapy.
You are entitled to your opinion, but it is NOT an immunosuppressant BUT an immunemodulator.
Please research the years of safety and it's proven track-record. It it the US Market in 2007ish? My original neurologist suggested switching from Avonex to Aubagio.
But at the time the "devil you know is better than the devil you don't" and I stuck with my long-time companion, Avonex (September 1997-March 2022).
After twenty-five years of self-injecting IM in every other leg, I switched to Aubagio. I'm a happy camper. Despite my slight hair loss with the Menopause thinning of hair and nails, too.
According to the NIH, teriflunomide is an immunosuppressive agent.
What does its safety and track record have to do with whether it is immunosuppressive or an immune modulator? What does the year it reached the US market have to do with anything? What does your personal history have to do with how it is catagorized?
Sorry, I understand that you are a doctor, but please review some of the information posted by Dr. Aaron Boster on YouTube. During the start of Covid (2019/20) he was discussing the different suppressive treatments.
Perhaps my history and Aubagio's history are merely red herrings to you, but I do feel that information is important when recommending a treatment to another MSer.
Of course your history and Aubagio's track record are important when advising other people on this site, but you were directly "speaking" to me and telling me that I needed to do research, etc. In truth, it's really a matter of semantics. There are two types of immune modulators. One type increases the immune response. This type, for example, treats cancer by helping the immune system destroy cancer cells. The other type of immune modulators decreases your immune response. These immune modulators are also called immunosuppressants. The immunosuppressants that are used as MS DMTs vary in their degree of lymphocyte suppression. Aubagio is more selective in what it inhibits than some of the other DMTs.
I'm glad that you have a treatment that you really like and that works for you. You are fortunate in that regard.
I am sad to hear of your new lesions, greaterexp . Recently, there was an article on mymsaa.org comparing the DMTs currently available. I am on Ocrevus, and doing well. You’re always welcome to contact me anytime, and you can come visit me if you are ever in Tucson. 🤗
I'm not interested in MS meds after my experience with Copaxone and I won't be swayed/scared into taking any new wonderful drug that comes up in the future.
Hi greaterexp, you're not whining at all. You raise some very legitimate issues. I would like to suggest you take a look at my post from 4 days ago, titled "More on Stopping DMT's". I asked a very similar question and got tons of responses from those who stopped and just as many responses from those who are happily staying with a DMT. There were a lot of very informed and thoughtful responses to this subject. I am 64 and recently stopped after being on several different DMT's over 25 years. After a visit with my neurologist last week, she wants me back on therapy and I am struggling with a decision. It is, of course, a very personal and individual decision, and I wish you the best. 🤗
I think a main factor in the decision process is that she has evidence of new disease activity and progression with a new lesion and worsening balance - that’s huge. If things were stable clinically and on imaging, it might be a different equation, but they’re not, her MS is progressing.
I was on copaxone for 5ish years, from being 21 to 26. Then I was tried, and failed, with tysabri (my bloods came back as me being JCV positive). So, back on copaxone I went for a few months until the neurologist had enough evidence to get me on ocrevus. I was 27 when I started that one, and it's an absolute lifesaver! I went from barely being able to walk in my own home to being able to walk as quick as my right leg allows me and my stick 😜 the ocrevus and the tysabri are both infusions. You only need to go and have bloods done a couple of days before your infusion (get your bloods done from your dominant arm) and then on the infusion days you'll get a cannula put into your non-dom arm and have the premedications and the actual medication go through automatically.
I don't know about the insurance headaches people have. I've never had them because I've got the NHS.
First of all, it's okay to whine. If we can't whine here, where can we whine? As for DMTs, each of us is so unique, both with our MS profile and our individual tolerance for drugs, it seems to me it's a crap shoot to start a search for the one that's a best fit for you. If worsening balance is your major concern at the moment, perhaps seeking out a PT experienced and skilled in addressing balance problems might be an option for now as you mull your choices.
Forgive me for my ignorance but I had never heard of subsutaneous DMT injections. When I think I’ve exhausted my neuro knowledge I learn something new!
I'm sure it's just a matter of when you were diagnosed. There were no DMTs until Betaseron was approved in 1993. By the time I was diagnosed in 2001, there were also Avonex and Copaxone. All had to be injected. A lot of people are still on them, but I'm very glad not to require injections anymore! 😊
I m now 68 & I quit Copaxone for the same reason 2 years ago & changed to Vumerity. I haven't had any problems with getting sick etc. Of course I take care not to touch door handles in public places as much as I can & always wash/sanitize my hands before I put anything near my mouth. Vumerity is a 2 pill 2x a day. Since I've been taking it I've had no MS symptoms or flares or MRI changes. For me its been better than Copaxone.
Continue to research but I totally understand your hesitancy to start a new DMT. I think the most important thing is to find an awesome neurologist who specializes in MS. One that listens to all of your concerns and fears and helps you make the best treatment choice for YOU. No two cases are exactly the same but you know that. And any choice that we make regarding treatment does not have a guarantee. I had a new “active” lesion in my right temporal lobe, Oct 2019 and almost started on Ocrevus. I went through all the pretesting and authorizations but with covid coming early 2020, everything got delayed. I ended up having second thoughts and wanted to wait. My neurologist was ok with that as long as I stayed connected and scheduled another MRI. My next MRI remained stable with no new lesions. I just turned 65. I say find a good MS specialist, even if you have to travel. Love and hugs to you!
I would without a moment’s hesitation, find a highly qualified MS specialist neurologist in Portland at an MS center. This is your central nervous system - your brain, eyes, spinal cord - and you have a new lesion, showing your disease is active and progressing. You may have another 30+ years ahead of you, do what you can to protect yourself and your function, quality of life, and function for the future. One new lesion developing in a critical place can cause irreversible disability in a heartbeat, and there are excellent treatments now that are very successful in preventing that from happening.
In MS and other autoimmune disorders, the immune system is badly malfunctioning, attacking our own tissues, and causing our disease. It is hyper-reactive and needs to be reined in and calmed down, it’s not like suppressing a healthy immune system. I am close to your age and in a wheelchair much of the time now. I can walk a little, but not well, not far, and not for long. I can’t stand for more than a few minutes unassisted many days. It breaks my heart that when I have grandchildren I won’t be able to care for them independently, while I’d always imagined being more like a second mom. I also hate the increased burden I place on others I love, after being the one taking care of everyone and everything else for so much of my life. Cherish the function you have and fight to protect it.
I won’t pretend to understand reluctance to get an injection with the stakes so high, I’ve had more infusions, injections, procedures, and surgeries than I can begin to keep track of - you do what needs to be done and it’s so minor in the greater scheme of things. Ocrevus is given by IV infusion over a few hours, through which most sleep from the Benadryl added to the IV. It’s only needed twice a year, and after several years possibly less often. Kesimpta is a very similar drug self-administered monthly via a sub-q injector pen. Most of the pill form DMDs have lower effectiveness, but consult with a true MS expert to discuss options. For what it’s worth, I don’t catch circulating bugs or get sick any more frequently than I did before becoming immunocompromised, in fact, I haven’t had a cold in many years. Common sense precautions and getting up to date on vaccinations before starting is all most people really need. Again, your immune system is already misdirected, modulating it and suppressing parts of it is logical and strategic in autoimmunity. I wish you all the best.
Well said. We need to continuously fight to preserve what function we have, or we may lose it. Right now, once it is gone it will probably never return. Hoping for a med to repair myedlin.
You've gotten a lot of good advice here. I just thought I would add that since being on Ocrevus I have not had to deal with a specialty pharmacy since it is given as an infusion rather than dispensed to you.
You have to remember when it's due, then ask your doctor to order it, then schedule it. But it beats those painful monthly phone calls that seem to take so much longer than they should. I don't think getting an infusion is much more time consuming than getting my hair cut and colored, now that I've had it before and didn't have any problems. I bring something to read and it goes by pretty fast.
I think you should go to the specialist in Portland, too. Best of luck to you, whatever you decide.
Based on new information available from MRI written reports, do you know the number of lesions you have based on LesionQuant? Total disease burden is indicated in this information. My Total disease burden (WM - white matter -lesion volume as percentage of WM volume is 19.3% (previously 15.78%). Doesn’t take a rocket scientist to see I’m getting worse.
Also indicated in written report is NeuroQuant substructure analysis is information that’s above my level of understanding with lots of big words I have to look up but it’s a written record that I have so I can ask questions. These reports should be available from the radiologist. Very important that you get written reports! I was able to prepare my questions for review with my neurologist during my appointment last Monday.
I seem to forget more than I remember so these reports are so helpful!
I am also 64 and, even though I've had stable MRIs for years, I don't want to stop meds. I'm on Aubagio and it is doing well for me. There are so many meds available. I would think something out there that can help you.
i did tecfidera (loved it but decreased wbc count too much) Copaxone (loved effects hated injecting, got new lesion) aubagio (hated it, did nothing for me, symptoms seemed worse) currently on ocrevus and have been satisfied with it for many years
I have been told that 'we' who are 'senior' 60+ should NOT have anymore problems with our MS! BUT nobody told the MS that! I am 70.8 & I am not ready to stop taking something that is helping me stay on my feet. I am praying for you. Mary
I'm so grateful for all the prayers. Though I somewhat regret going off my DMT, since I have a new lesion, I am grateful for the break. I think it was a mistake, however.
We get so much advice that sometimes my head spins, remember you can only do what you do & when we are mislead it is there fault. Just don't let them do it to you again. Love, hugs & prayers are on there way. God bless you!
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