Good Morning Everyone!!🌞 How are you today? On a scale of 1 to a hundred... 😂
In all seriousness, What Do you expect from your disease-modifying treatment? What has YOUR NEURO told you to expect?
And if you care to share, which DMT are you on?
Much Love 🤗💕
Jes🦈
I am at about an 87-93 most days.
I expect a miracle.
When my neuro prescribed Copaxone, she it could "possibly" slow the progression by lowering the amount of relapses.
My experiment with that drug didn't last too long as my reaction to it was not good.
I am not presently on any DMT and have no plans to do that. The last relapse I had was a few years ago when I had the flu.
Other than that I am doing alright and have a lot more energy since modifying my diet.
I have been on seven different DMT’s over twenty four years and currently on Aubagio the last two years 👍. I never expected improvement just the slowing down of the ms and of course the relapse is a big thing 👍. I know that the DMTS have done there job as I am still upright and going 😊. I hobble with a AFO and occasion use of a cane with the other side effects of fatigue and heat, but all in all not bad 🙏😉. I truly think the DMTS do there job, Ken 🐾🐾
Good morning! I’m not freezing to death, was able to eat two small breakfasts today, and clean up some without getting too dizzy, so I’m a lot better than yesterday! 🎉 How are you?
I was on Copaxone for a while and then Ocrevus. I was given zero expectations from her and I didn’t ask for any...everyone’s MS is different, everyone tolerates meds differently, etc, we all know this .
I do expect to have fewer new or active lesions/relapses than I was having, while on any DMT. I expect to have less accumulation of terrible crap (progression) while on Ocrevus. I also expect to be worse than I am now after this pregnancy, if we have to wait too long for my next dose 😬
Jes,
I've been on most DMT'S in the past. I experienced 3 exacerbations a year. Each time I was past on to the next med because of exacerbation frequency.
My expectation is to have one or less exacerbations a year.
I have been upgraded to Ocrevus. This is my first year out of 8 that I had no new lesions. So the med is working as it should.
My only issues have been enlarging current lesions. These are almost worst than new lesions because it's making my current symptoms worse.
Has anyone else on Ocrevus experienced this?
JTZES Yes, at my last appointment was told basically the same thing and all my symptoms continue to worsen also. I have only had 1 full infusion of ocrevus so far so am still hoping it will slow progression.
I’ve had my second half of OCREVUS on April 14 I did better on Avonex I seem to be having issues I had before I started Avonex some 15 + years ago. I see my neurologist in the middle of July and I’m going to ask her if I can go back to Avonex. I’m 62 and have had m. s. Since 1982 not diagnosed till 94. I’ve recently read Avonex doesn’t work as well as it did when I first started it. has anyone else heard this? I was doing quite well on it but I stopped taking it thinking maybe I would be fine. Wrong idea, now I’m afraid 😱 it won’t work like it did when I was on it. I’m having burning in my right thigh, I still work full time and I stand and walk a lot in my job.
Hi there: I have been on Tysabri for over three years now. My MRI is showing no new lesions, but I feel like I'm getting worse. My Dr. told me it is supposed to stop the progression of it, which it has, but only on the MRI. I guess I was expecting a miracle, but that didn't happen.
That is EXACTLY what is happening to me! I’ve had 43 doses and my MRIs are unchanged but I’m progressing. My neuro is thinking about the new drug Mavenclad. We’ll see.
Is this new medicine in place of the medicine your on and is it a trial? I have an appointment in July with my doctor so I'll see what he says. Now they said it's time for the three tests that are annual tests (they are the eye tests and the one on the computer, but they never change either.
Mavenclad would be in place of Tysabri. It’s one of the 2 drugs that was approved by the FDA the end of March. I see my neuro in two weeks. We’ll see if we change it or just keep things as they are. It’s a huge decision. I may seek another opinion. My doc doesn’t want to do Ocrevus. Tysabri only last 3 weeks for me. My 4th week is always rough. All my symptoms come roaring back. He’s afraid Ocrevus would only last 4 months and then I’d have 2 bad months.
Hi honey xxxx my DMT is Tysabri it’s doing it’s job just not in my symptoms.....I wish it did but never mind as long as it’s sorting out progression and new lesions. Hope the big O is helping u xxxxxxx ❤️
I did two rounds of Lemtrada and I expect no new lesions or physical impacts/impairment and no progression from RRMS to SPMS. I don't remember what the Neuro said to expect.
50 years a few lesions got a back ache and I was told I had MS.10 years of Copaxone, no change in MRI but I can not walk. 2 year of no DMT, no change in MRI still can not walk. Did Copaxone do anything? How do you prove a negative?
Yours is a rational conclusion.
I started on avonex and did not react well to it. After 8 months I was switched to Tecfidera. I'm doing much better on that. I was told for both, the best I could hope for was to slow down the rate of progression. I'm expecting for it to stop. Most days I'm ok. Some days I struggle to just stay awake.
The dreaded fatigue!😴 Oh how I hated that sooo much!!! I had no clue about that until I came here Peruzzot . Royjr told me about Modnifili!! It's been my life saver! 🌞 Talk to your PCP about it? 🤗💕
🦈
J💗, I am not good w/any of the DMT's💉💊, so I have been doing w/IFWt the Candida diet cleanse for 6 mos. Now & I must say I feel more stable, my balance is back, no more drunken feelings, I absolutley L🌈Ve this diet!👍👍Almost feeling reversed here. I highly recommend no DMT's💉💊& get our guts cleansed. "Healing Multiple Sclerosis", ebook kindle by Ann Boroch, Through my own & 1,000's of others doing this experiences, bee-very aware of that scary tysabri, already 20 people w/ dx of JCVirus have died of PML😵😮😀🌺🌷💐🌸🌻😸😻😺🐾🐶
L💗VE YA'all
Love you too Jazzihorsecat !!🌹🤗💕🦈
Idk but I’ve lost so much hair from Ocrevus which I was not warned about. I expect my dmt to slow down my progression. I will ask my neurologist to put me back on Avonex ASAP because it made me have less exasperation and no hair loss I can’t believe how my hair I’m falling out I’m embarrassed 😞
First was Tecfidera which made my white blood count drop like a stone. Then Copaxone which I (thankfully) had a reaction to (hate shots). I have been on Aubagio for several years which does NOT bother me (yeah!) and I've been holding steady. So I guess that's what I expect from it...to hold me steady.
Do you have vision changes from MS?
How can you tell your DMT is working?
10 Things Your Doctor Won’t Tell You About an MRI
What do you think?
