Question about tx for SPMS

[suznj325]

I have my reg. 6 mos. checkin with my neuro this coming Thurs. 3/8. I transitioned to SPMS about 5 yrs ago. Previously, I had taken Copaxone from the time I was dx in 5/2001. During these 5 years, the only thing I've taken was during a double-blind MS med trail...& I don't know if I was taking THE drug or placebo. I had no adverse side-effects or reactions to whatever it was.

Anyway, I'm currently not taking any MS drugs. My last MRI was 7mos ago... nothing new. My neuro doesn't seem too concerned that I'm not taking anything. I've noticed more progression just since I saw her 7 mos. ago. I was taking a cane or walking stick when I knew I was going to be walking more than usual... now, it's rare that I don't use one. There are other 'signs', as well.

I'm wondering about having another conversation with her about taking something to slow the progression. However, I'd like to have some suggestions/experiences from any on this forum/group who have SPMS. If you're not taking anything, I'd like to know your experience, as well. It's not that I WANT to take something (I hate taking anything more than Tylenol)...I'm just wondering if I SHOULD!

I want to add, in all this time of living with MS, this is the FIRST time I've ventured into an MS group of any kind. I feel sort of vulnerable, & a bit lost.... this is a new experience, for me. I'm so glad I found "YOU"!!!! I've already learned things & asked myself why I've 'stayed away'... maybe more denial than I've actually realized!!

Sorry about the long post!!! Thanks for reading! I look forward to your responses!

Suzn

[Juleigh21]

suznj325 I have learned a lot on this site also. So many people have had similar experiences and have given solid advice not to mention the support. I think you could ask your doc if a med might slow the progression. I know quite a few people who have SPMS who are still on meds. Some docs treat MS aggressively and some are more conservative. You could always get a second opinion too. I did that when I kept relapsing on Copaxone and the new doc switched my DMT and the result was my progression has slowed way down. Good Luck and let us know what you decide!

[suznj325 in reply to Juleigh21]

thanks for your insight, Juleigh21.

[erash]

suznj325 me too...copaxone for a brief time then nothing for yrs. MRIs no changes but symptom creeping and accumulating. Thinking seriously about Ocrevus. I also have SPMS. My next neuro appt is April 4.

I worry about feeling worse on meds, potential bad side effects, no guarantees for improvement or stabilization vs tolerating this slow progression of symptoms that I adapt to 😬

Optimistically, I think I can combat this all with healthy lifestyle. Had horrible stress over the past yr and I'm blaming that for the progression. But of course can't be stress free can only learn to manage stress and that my plan for now.

Would love to know what u decide to do?

[suznj325 in reply to erash]

Thanks for your reply-/ I'm the same/ don't really wanna deal with side-effects! I'm definitely trying to maintain a healthy lifestyle through conscious eating, vitamin supplements, & exercise. I do aqua-fitness classes 2x a week and LOVE it. If I fall or get off balance...I just get wet! I highly recommend water exercise classes for MSers!!

[Cwacker]

Hi suznj325,

I too have progressed to SPMS in 2014, and I was on a double blind trial drug for SPMS for 11/2 years and did fine altho I don't know if I was on it or not. They didn't want me on the continued long term trial (who knows why, my age? my neuro? no one gave me an answer) so I had to stop it. I decided to go off of meds rather than trying another drug that wasn't specifically for SPMS but after 6 months I started having more issues with my left leg and my new neuro at the time told me I can never get off of meds. That I needed to stay on something to help slow the progression of the disease. At this point I started taking Gilenya, (it was similar to the trial drug I might have been taking and did well) All went fine for about 5 months and then the wobbles appeared along with increased problems with my eyes and brain connecting. My new neuro (my other one retired) said it was the normal progression of the disease and to stay on Gilenya along with physical therapy which helped. I'm better, its improved somewhat as long as I don't get tired. I'm used to the slight wobble now, but still have a problem when I'm in a crowd, need to hold on to something, my husband, the wall, a chair, I can fake it pretty good! I'm grateful for what mobility I do have and try not to dwell on what can this progress to. Knowledge is power, and this site has been so helpful to me, I hope you are helped with everyone's responses~Clara

[suznj325 in reply to Cwacker]

Thanks so much for responding, Clara!! Similar story with the left side... especially my left leg... which sometimes feels like it weighs 500 lbs. I appreciate your insight! ~~Suzn