Reducing relapses as opposed to slowing progression

[greaterexp]

What are your thoughts about your DMT slowing progression? There seems to be differences of approaches by neurologists about the efficacy of DMTs. Some feel that if you aren’t having relapses, your DMT is fine. Others seem to think that if you are progressing in the absence of relapses, you need to consider a different DMT. I’d like to know your thoughts and the reasoning of your neurologist.

[Stronglady]

I am currently on Ocrevus and having a flair of symptoms. I still feel like the Ocrevus is doing something positive. I feel great otherwise.

[Kenu]

I am currently on Aubiago for last two years and no major flares but having progressed symptoms. Last MRI’s have been stable and no new lesions. My neurologist has given me options of changing DMTS, stay on Aubiago or even quitting DMTS as he is not sure it’s doing anything? Been 25 years of DMTS (seven) and he has been great and letting me decide with his knowledge and opinion. There are new side effects of new drugs to think 🤔 of and I am doing pretty well with what I am doing. Unless something new comes along or if insurance gets crazy I think for now I am going to stay on Aubiago and keep close eye on what’s happening with me. As we all know the insurance companies dictate what they will pay for 🤬 Ken 🐾🐾

[Stronglady in reply to Kenu]

I was on Tysabri for five years.No new lesions or relapses. I was then put on Aubagio. It did nothing for me except made my skin very dry, lose a third of my hair and gain 7 new lesions. Everyone is different. Stick with what works for you.

[drnikki in reply to Kenu]

what are your progressed symptoms? i am on aubagio as well and it seems to be helping me stay stable though i do have some cog fog...

[greaterexp in reply to drnikki]

A little more bladder trouble, more muscle spasms, more numbness and tingling, episodes of vertigo, and weird stabbing sensations. There’s nothing that points to a relapse, however. These have come on or increased gradually.

I will talk with my neurologist when I see her next.

[Kenu in reply to drnikki]

I have been on seven different DMTS over 25 years. So my progression is symptoms that I had all along they have just slowly progressed like fatigue, pain ,balance, drop foot, vision off and on, gait, and slight memory at times. Ken 🐾🐾

[Doubled51 in reply to Kenu]

I had the same symptoms except vision on plegridy for 2 1/2 years til two new lesions appeared. I’ve been on Gilenya for last 6 mo but symptoms still seem to be progressing.. I’ve had a couple of light relapses since but nothing like I bad on other dmt.

Donnie

[kandykone1 in reply to Kenu]

What’s progressed

Symptoms vs no major flares?

[carolek572 CommunityAmbassador]

Like Kenu , I rely on my neurologist to let me know if a DMT is doing any good. I have been on Copaxone, Tecfidera, and now Ocrevus since diagnosed in 2006. I have had only one attack that I can think of and that was right before being diagnosed. Has the DMT's prevented me from attacks? Not sure. How do you prove a negative? I have been steadily getting worse. I am thinking of NOT continuing my DMT. Why? I just hate being tethered to a healthcare team and I absolutely loathe being at the mercy of health insurance companies who see you as $$$ instead of human, and pretty much run their business as such. Sorry for this rant, but the insurance company is giving me the run around.

[greaterexp in reply to carolek572]

I’m sorry to hear that. Those companies continue to practice medicine without a license, to my way of thinking.

[carolek572 CommunityAmbassador in reply to greaterexp]

Yes, my thought exactly

[Peruzzot in reply to carolek572]

I'll second that!!

[Raingrrl in reply to greaterexp]

I agree greaterexp !! Disability administrators that handle short term and long term disability do the same. I was put through the wringer when I applied for disability through my employer.

[Peruzzot]

I haven't had any new lesions but have been getting worse with cog fog, memory issues, and fatigue is getting worse. Plus I've been dragging my heels more especially when I'm getting tired. But no new lesions as of the last MRI. My VA neurologist says I've never had a brain MRI done with this VA I think I have but I've had sooooo many done over the past 9 years that they all blend together at this point....anyway he wants me to do another one to see what's going in my brain. He gave me one of those quicky memory tests that I of course did ok on. You would have to be really bad off not to do ok on it. I was able to remember 3 or 4 items out of 5...struggled to remember that many but he gave me full marks anyway. The math problem I think I completely messed up but was close on guessing the answer so he gave me full marks. He didn't seem to take my memory issues seriously. I have another neurologist that I see more frequently and will bring it up with him at my appointment with him next month. He wanted me to use the cpap for at least a month before seeing me again to see if is any help with fatigue issues. No new lesions seems to equal no progression with some of these doctors. 😤😤😤

[mrsmike9 in reply to Peruzzot]

Ask them for a neuropsych evaluation. You will take multiple tests which will measure how well your memory is. It takes quite awhile to do all the tests but you Will get an answer. You may need to do it again in a couple years as the first can tell you where you are now and the next would tell if you've declined.

[Peruzzot in reply to mrsmike9]

I had one done already back in 2016. I scored a 97 for long term memory and a 3 for short term and working memory. Average I was told is between 16 and 85 on a scale of 0 to 100. Long term memory near perfect with short term and working memory nearly nonexistent. I've noticed it getting worse. I just need something to back me up on that. Insurance is denying the test. My regular neurologist is fighting with them to get it approved. I was talking to another MS patient who told me about a resource program that the national MS Society has that might be able to help me get the testing done. If the insurance still refuses by the end of the month I'm going to get more info on the NMSS resource.

[greaterexp in reply to Peruzzot]

I hope the test gets approved. Will you let us know how it goes and if you were able to get help with the costs?

[Peruzzot in reply to greaterexp]

I certainly will.

[greaterexp in reply to mrsmike9]

Great suggestion! I've never had one. I listened in when my husband was given a preliminary test, and I didn't do so well as I thought I would. That "working memory" thing is a whole new ballgame. I'm sure the actual test can reveal a lot!

[rjoneslaw]

My neuro had me change as soon as I came out the hospital from my exacerbation. The dr from the hospital put in my records I need to come off Tecfidersa and go on O. While I was in the hospital it was never given to me

[RoyceNewton]

I am on DMT(Tecfidera) I have noticed very few relapses, though I have noticed some disease progression. It is only around 30ish% effective so I expect no more.

[kandykone1 in reply to RoyceNewton]

What is the difference between relapse and disease progression ? I’m still learning ☹️

[greaterexp in reply to kandykone1]

multiplesclerosisnewstoday....

I hope this answers your question. Aaron Boster has some great YouTube videos explaining many aspects of MS.

There is a recent post with a link to the excellent New Zealand online course on MS, though I can’t seem to link it here. I encourage you to take the course. It’s free and very educational.

We all keep learning!

[RoyceNewton in reply to kandykone1]

read below, all part of the learning experience, good luck and stay well

[twooldcrows]

i have been on avonex, copaxone and tecfidera and back to copaxone and now ocrevus ...and now i do feel the best of all of them and am doing better walking with out my cane if it is going to be along day of walking then i take the cane but if i have something to hang on to like a cart i go for ever of course when i get home i am tire but love getting out and going to stores shopping ...my doctor and me talked about what and when and again what to try next and i do love being on orevus ...and it does depend on each person...to me don't be afraid to try something that is new and with big promise of slowing it down ..try it and if not for you can go back on it or try something else....

[greaterexp in reply to twooldcrows]

Thanks for the encouragement. I am wondering again about switching, but it would have to be Rituxan, since insurance, as usual, won’t cover any part of Ocrevus.

[Hidden in reply to greaterexp]

I was on Copaxone and then went years without a DMT until a recent new lesion. Dr wants me to try the second level drugs this time since it’s been over 10 years and I have had some worsening of symptoms, in addition to recent new lesion. I so fear the side effects and feeling worse. I am approved for Ocrevus and was on board until I recently read about Dr Terry Wahls and the Wahls Protocol diet. I would love to go the natural route! I have a call in to talk to my neurologist. Hugs.

[ahrogers in reply to Hidden]

My neurologist is a vegan so obviously believes in healthy diets but she does not believe any of the MS diets out there should replace DMTs. She believes keeping your overall health at it's best through diet and exercise help but that you still need a DMT to control this disease.

I have been on Ocrevus since 2016 and have pretty much no side effects. About a week after the lymph nodes in my neck get a little swollen and tender but that only lasts a week or two. Although I just had my last infusion 2 weeks ago and it did not happen this time. It didn't happen the first few times I got it either.

You just have to make the decision that works for you 😁

[Hidden in reply to ahrogers]

Thank you. It most often seems that if it appears to good to be true, it is. This diet apparently worked for her but again, every body is different and every MS is different. I appreciate your input!

[greaterexp in reply to Hidden]

Yes, it's difficult to get the straight scoop on what happened and is happening with Dr. Wahls. I read from what seems to be a reputable source that she also did a chemo-type treatment and may now also be on a DMT. Stories that claim she changed her diet and suddenly leapt from her wheelchair are not really true. I do believe diet is important for MS patients, as it is for everyone. I can't really get behind diet alone replacing DMTs at this time, at least for me. I'm saddened when I read that someone stopped their DMT using diet alone, and then ended up with more damage and disability and progression. That said, I support people who make informed choices about their treatment, no matter what it is.

[Raingrrl in reply to ahrogers]

I agree with your doctor ahrogers . I have improved my overall health the last couple of years by changing my diet, exercising and losing 15% of my body weight. I’m also on Ocrevus. So I feel like I’m doing all I can to stay stable.

[mm1527mm]

I always wondered the same. Many on dmt say they do not have anymore lesions but still have progression so I wonder if that dmt is not working if it is just how ms is with the slow progression. Terrible disease

[ahrogers]

My previous neurologist changed my dmt when my symptoms progressed even though there was nothing new on MRI. I don't get typical relapses, usually new symptoms come on slowly and never improve. My first relapse got me to change from Gilenya to Rebif, I did have new lesions on MRI that time. The second was the one with no change in MRI but went on an Ocrevus clinical trial anyway. He offered to let me stay on Rebif but I was tired of the injection site reactions.

I wish your insurance would approve Ocrevus! I love it, my symptoms have progressed very little since starting in 2016. I remember wanting to try Lemtrada with my first relapse on Gilenya but it was only approved for use after failing 2 previous DMTs and I had only been on one so went on rebif. The clinical trial for Ocrevus at that time did not allow previous use of Gilenya otherwise I would have gone on trial a year sooner.

Long story short my neuro has left it up to me if I wanted to change when it was progression without MRI change but recommended changing DMT with relapse and new lesions.

I think if you have a neuro who sees a lot of MS patients they should be up on what to reccomend.

😁

[greaterexp in reply to ahrogers]

My neurologist referred me to an MS specialist because she was seeing some progression and wanted what was best for me. We were considering Ocrevus initially, and then Rituxan, since that was what insurance would help pay for. She only has 3 MS patients and felt she needed the input of someone else. The specialist said I could just stay on Copaxone, since he didn't see new lesions. I was fine with that initially, but with increasing symptoms, I'm rethinking.

[Ohmywhynot]

20 years since diagnosed. Avonex did nothing for me, rebif was better, currently on gilenya, mri’s have been stable, but the past two years have been a fast decline in symptoms. I can no longer move my right leg, driving privileges have been revoked, I will talk to dr next week about ocrevus. Wish I’d done that two years ago.

[greaterexp in reply to Ohmywhynot]

I'm sorry about the change in your symptoms and abilities. I hope you can get the change in medicine and that it works much better for you.

[4fishylady]

I have been on Tecfidera for 4 years and have had only a few relapses. I have had no new lesions, that I know of, but haven't had an MRI in a couple of years. I had one relapse last year, that I had to take prednisone for. I do still get some fogginess a couple of times a week, and a little leg weakness, but then I have not been exercising as I should. Just came home from a strenuous water exercise class at the Y, and glad I'm still walking! Being out of shape, and having a new male instructor who really worked us hard pushed me to my limit. I had to leave the class was over, because I was feeling it in my head! Haven't had that issue before, but I knew it was time to leave while I still could drive! I have just begun reading "Healing MS" by Ann Boroch CNC, and am not sure I will be following everything she says. I eat a very healthful diet for cholesterol purposes, and I try to include hints from others that I can, if I am convinced it will help. Overall I think I'm doing very well and not getting any worse than when I was diagnosed. I'm one of those who have actually had it for many years before diagnosis, because I've had the same cog fog issues for about 40 years at least, and diagnosis was just 5 years ago. My Neuro agrees.

[Goldilockssearching]

Not sure if this helps or not-I am on Ocrevus but it’s the only dmt I’ve been on so I don’t have comparison-no new lesions, disease is stable, neuro is pleased. I have noticed symptoms have improved but few have left completely. The severity is really dependent on sleep, hydration, food intake, weather etc.

My lingering unanswered question; Is it that the relapse that led to dx has been slowly remitting for 2+ yrs or is it the dmt?

So I guess for me at this point, no new lesions is best to not add to the MANY I already have.

[greaterexp in reply to Goldilockssearching]

I think many of us have those unanswered questions, but it's wonderful that this DMT seems to be working for you. Hurrah!!

[mrsmike9]

I'm on med number 3, Aubagio, and the only true relapse was when I couldn't get my meds and went 2 weeks without. Personally I will Never go off meds because I know what will happen!

I have an MRI once a year and there has been no new lesions. However I get tired quicker and my cog fog sometimes is very difficult. My own personal opinion is since they don't check grey and white matter in the brain unless they have one of those higher resolution, super expensive machines. I believe those are fairly rare. So I've seen teeny changes, bit by bit, even though the MRIs show nothing new.

[Wizardsmom]

My neurologist switched me to Ocrevus because of both and how I felt on my previous DMT.

[greaterexp]

It seems as though Ocrevus does slow progression, as well as prevent relapses.