Encouraging folks to stay on their MS treatment

[Workerbea]

Wishing everyone a Happy Spring! In May or June I'll be having my next MRI to see if going back on my old drug (Avonex) after being off treatment for a year worked. I'm 68 and I was on Avonex for many years. A year ago, my neurologist wanted me to try Aubagio, but after three months I developed Neuropathy and went off of Aubagio. My neurologist wanted me to try Mavenclad but I didn't feel brave enough and suggested going back on Avonex. The previous MRI showed five new leisons which she said wasn't seen often. From my experience, I strongly suggest that even in our mid to late sixties going off of our MS medications can be detrimental. I've read this might be suggested to go off of medication, but our MS may still be active which I've found out the hard way. I hope this helps others who may be thinking about going off their drug if it's suggested by their neurologist as they age.

[Sandydemop]

Dear Bea, i hope it goes well for you. I took Mavenclad and no side effects so far. but find what works best for you.

[Workerbea in reply to Sandydemop]

Thank you. I hope so too! It's good to hear that Mavenclad is working for you!

[Frances_B]

Yup - ageism is alive and well in the MS treatment arena - it seems to be all too common in USA for people to be taken off their meds when they are deemed "too old" to continue taking them, but there seems to be a surprisingly large number of older folks who then relapse and develop new disease activity and lesions and more disability as a result. I reckon that if it ain't broken then don't risk breaking it - leave things well alone. The ludicrous insurance situation in the USA also seems to influence what should be medical decisions more than it has any right to - and that's a problem with the system, not the drugs!

A common argument seems to be the chorus that sings the song that there isn't enough evidence that the drugs are "safe" in older people - but that's got a lot to do with clinical drug trials having excluded people over the age of 55 - so of course if they weren't included there won't be any evidence in either direction .

[Workerbea in reply to Frances_B]

Such a good point! We need to continue to be our own advocate and make decisions on what feels right for us. I can't go backwards and redo decisions but I can go forward and make future decisions that are worth trying. Thank you for your thoughts.

[Fancy59 CommunityAmbassador]

My thoughts exactly however last August I got really sick because I was on an immune suppression therapy and my immune system got zapped and I got a septic infection, then collapsed a lung and almost died. I am anxiously awaiting my June visit to my neurologists where they're going to do another ultrasound to see if I'm having any new lesions appear. If there are new ones then I will be able to convince the neurologist to put me back on an MS therapy. Time will tell. I'll play on clear and I will be able to stay off of therapies and prevent the possibility of getting another severe infection. Wish me luck! Fancy59.

[Sandydemop in reply to Fancy59]

hey Fancy, seeing you surrounded by light and wrapped in the wings of angels as one of our friends says.

[Workerbea in reply to Fancy59]

So sorry Fancy59 to hear about your experiences! Thank you for sharing. Wishing you the best results in June. Please let us know how you are doing. We'll be thinking about you.

[Tazmanian]

DMT's are the most important thing we can do to help ourselves

[Workerbea in reply to Tazmanian]

I agree Tazmanian. We must do what we can!

[Greentime]

My neurologist retired and my new one told me she would not mind if I went off of avonex as I have been stable with no new lesions since 2008. I took her advice about a month ago without researching the idea, which is very unlike me. Lately I have been reading some pro and some con articles. It seems to be quite controversial at present. Today I read a study until my eyes were closing! It appeared that the group of 131 who discontinued DMT were ever so slightly worse than those who stayed on their drugs. I am not sure what to do. I wish you the best Workerbea.

[Workerbea in reply to Greentime]

Thank you for your thoughts. I've come to the conclusion that staying on a drug my body is use to, is worth it. I know what the symptoms are, caused by that drug, and making changes for a possible better drug isn't worth it to me. Soon I'll be getting my 6 mo. MRI to see if going back on Avonex is helping. If the results are no new lesions, I'll continue taking this drug.

[Greentime]

I forgot to say I am 67 and have had MS for 3 years. I have been on avonex since 2006 when I had a new lesion.

[Greentime]

oops, make that 38 years!