CARE is #1 !

[Kenu]

Good Morning 🌞 everyone. For those who follow me a couple months ago I posted about my neurologist suggested the last two times about going off DMTS. I have been on them for over twenty five years and I am over 65 years young. Been on seven different DMTS and the last two years on Aubiago. Well, it’s been two months since I quit taking Aubiago and so far nothing has changed 🙏. They say it stays in your system up to eight months. There is a drug to take to get it out in a week or two, but haven’t done that. I did ween myself off and as I say has been over two months since last pill 💊 In September if things are going well we will do a brain 🧠 and cervical MRI to check on lesions 🤞. Will keep everyone informed as time goes on 👍🙏😉 Ken 🐾🐾

[falalalala]

I hope everything goes well for you!

[greaterexp]

I'll pray that this will have only good effects for you. Keep us posted!

[Morllyn]

🤞👍❤️

[carolek572 CommunityAmbassador]

If I were to no longer take a DMT of any kind, I would certainly do it with the assistance of my neurologist, Kenu So, you are doing it in a very measured way, and that's good. Can I ask you a question ~ what type of 'ms' were you diagnosed with? I would think that it would be hard to monitor activity if you you have PP'ms'? That's my monster and it is progressing very slowly... Keep Smiling

[Kenu in reply to carolek572]

RRMS for fifteen years then SPMS. Have done one to two MRI’s yearly the whole time. Been no activity for five years 🙏😉

[carolek572 CommunityAmbassador in reply to Kenu]

I was asking because I was diagnosed in 2006 with PP'ms' after an exacerbation. I don't have those that I can tell, however I am slowly getting worse. I haven't had any new lesions on my spine, or brain, so I would say that the DMTs are doing its intended jobs. I often wonder if I need to be on any DMT. My neuro says YES, so I will listen to her, always! Keep Smiling, Kenu

[jimeka]

Love the caption. Hope you stay stable, enjoy, and the move is getting closer, 🤗

[2littletime]

🙏👍👌💖😊

[kdali]

That was fast! I hope your scans are very boring 🎉

[RoyceNewton]

I must have missed why he said to get off DMT, can you refresh my memory please.

[Kenu in reply to RoyceNewton]

States that after being on them for over twenty five years and over sixty five the progression slows down and with no new lesions in ten years and everything stable he suggests might be time to quit it and monitor closely for while. There are studies that show both ways just depends on each individual and how it’s effected you. Mine has been stable for ten years with mild progression. Studies show the first 5 to 10 years is crucial to be on DMTS. Then follow up on how progressive it is. I do have three months supply and if something happens I will be right back on it. 👍🙏😉 Ken

[RoyceNewton in reply to Kenu]

that is what I have heardf but I was not sure, thanks and good luck

[rjoneslaw]

I hope everything goes well

[CynthiaS]

Praying HP has it covered Kenu! 🙏㍕

[daveh121]

Dang. That is not easy but you seem to have a great attitude. All the best and hope everything goes well.

The Peanuts sketch is perfect and just about sums everything up nicely in all ways.

Thanks for that.

[agapepilgrim]

I was told to stop DMTs when I was age 71. Neurologist said patients over 70 would be best not to take them because of aging health systems or something. Don’t remember now. Memory failure getting worse. Last MRInshowed more lesions, shrinking brain, right side, told to go to pain clinic and neuropsychiatrist to deal with emotional challenges and daily pain. RRMS, btw. So, I think it’s an age related thing. My primary care doc takes care of my meds. I cancelled this years appt with neurologist; didn’t see any reason to return. I will deal with it one day at a time. Muscle pain in arm is getting real bad - use pain patches constantly and cognitive decline is progressive but such is MS life. I’ve been blessed since having it for 56 years. We will survive, even this.

[Frances_B in reply to agapepilgrim]

If your last MRI showed new lesions then clearly your MS is still active. I'd be seeking another opinion as while many neuros don't see why older patients should still keep taking DMTs the more up-to-date ones tend to believe that if there is MS activity then DMTs should be continued. Yes, there are some issues with immunosenescence in older patients and most clinical trials don't include people over 55yo but why should someone just be put on the "scrapheap" because of their age. I'd be asking a heap of very pointed questions and not putting up with being told to go to a pain clinic. It could also be that your some of your issues may be not be related to MS and should be investigated further. Good luck

en.wikipedia.org/wiki/Immun...

[agapepilgrim in reply to Frances_B]

Thank you. Guess bottom line is I’m tired of fighting my poor health for 56 years, looking for remedies for so many comorbidities. Every specialist gives me a new diagnosis. This was the last “straw.” I tried for 3 years. I am tired. What will be will be in Gods hand. I eat healthy, take some basic meds and supplements, get outside when I can, active and hour or two. In bed about 15 hrs. Peaceful foR me.

[eharoot in reply to agapepilgrim]

I'm 80 and feel much as you do. my frame of mind and concern are different now

[pamgarner]

it is a new concern getting off meds,but if works out for you,what a relief,you don't have to navigate the "system" anymore

[Humbrd]

Hi Kenu 😀. Just wondering why your neurologist wanted you to come off of the Aubagio. I have been taking Aubagio for about a year and half.

[JTZES]

If the DMT has been keeping things at bay for that period of time why open yourself to the possibility of an expiration??

Do you have side effects with your current medication?

[hairbrain4]

Praying you do well without a DMT. I've thought about it myself even with Ocrevus because it's a real inconvenience to the person taking me to the infusion center, they have to find something to do for 5 hours.

[mrsmike9]

Let us know. I'm 61 and take Aubagio. I would be terrified to stop taking it. I'm amazed that your symptoms have leveled off! Let us know how it goes. Especially since I'm not that far behind you!

[agapepilgrim in reply to mrsmike9]

Not much has changed. Leveled off I guess except memory issues getting worse. Pain in right arm worse with daily use. Can’t follow movie or reading plots or conversation details. I just accept the challenges with Gods Grace. It’s great not going to big city and neurologist and MRIs and different meds. Just my primary care. I am much more at peace mentally. It works for me at my age. I worked until 62, at which time I took full disabled finally, so I had good life in spite of all that pain I suffered. No regrets. I am relaxing now, and coping. Love you all.

[pamgarner]

ok now,i guess it depends on the dr.I ask my neuro last time about taking meds as we age (i am 65 year young and fabulous!)he said some insurance companies refuse to pay because there has not been enough studies on "older"folks,he told me no matter what age, if I want to take a dmt he will help me find a way.I count on that.....he is a "cool"dude