Hi has anyone ever stopped taking a DMT for any reason other then to change meds? If so what were the results.]
I lost my Medicaid starting feb due to cost of living increase for SS I went over ther limit to make per month .
Just looking for help with seeing how others are doing if they stopped a DMT.
Hi kerry0915 are you going to start another DMT? Or do you need help with the one your on?
I'm not sure how switching DMT's work to be honest. I have been on Copaxon since I was Dx'ed. Someone else in sure can help with that.😊
J 🌠
I have not stopped my DMT but with new insurance again this year I am waiting for approval 🤷🏼♂️ Keeps getting more expensive with less or no coverage. I received $31.00 increase in SSDI and put me $100.00 over for food stamps Go figure 🤷🏼♂️ I think the government plans this 🤬 Keeps going and none of us will be able to afford health care. 🙏🙏🙏 Ken
kerry0915, I was diagnosed when I was 40 and took Avonex and then Betaseron for 15 years. When I was diagnosed as SP, my neurologist said that he had never told an MS patient this before, but suggested that I consider stopping my injections since they were not indicated for SP and my MS was very mild. I have not been on any DMT for 15 years and I walk with a cane outside the house and use a walker in the mall, etc., swim laps and lift weights. My life is good and I hope the same for you!
Okay... sorry for this very dumb question... what is SP?
Secondary Progressive MS
Thank you for replying. Sounds like we have a lot in common. I was dxd at 33 and I am 50 now .Have taken them all avonex rebif copanone tacfriedera oral and now gilynia. I was told I also have SP I am wondering if stopping this would also help due to Gilyena is for reslaping remitting. I too walk with a cane and walker for long distances. YOu have made me feel better Thank so much for responding
I am 69 and had read last year that DMTs no longer work as you get older. I told my MS specialist what I had read at my last appointment last year and he checked all my MRIs for 12 years and agreed with me. So I stopped Copaxone last September, had an MRI this month and there was no change. I have an appointment with him next month. I feel the same way I did before I stopped the Copaxone. No new symptoms. I guess I will feel better if I can say in a few years I am the same as I am today. I walk with a cane and use a walker for long walks and exercise once a week with a trainer. Have RRMS for 13 years
kerry0915 , I stopped Avonex after 3 years on it because I passed out one night a few hours after the shot and didn't want to risk having that happen again. A couple of years passed and I went on Copaxone for almost 3 years. I stopped it in 2010 because I didn't think it would help me since I'd had SPMS for so long, and the DMDs aren't known to help SPMS. They MIGHT help but there isn't any evidence that they do. I didn't notice any difference in the way I was feeling after stopping either of those drugs. I'm slowly, very gradually getting worse but luckily still have some use of my legs, can walk short distances.
About losing Medicaid due to higher Social Security benefits: In some states you can still get Medicaid if you're willing to meet a "spend-down." You spend a certain amount on allowable medical expenses and submit the bills and when you've reached the requirement, you're back on Medicaid. The catch is that you have to be without Medicaid while you're meeting the spend-down. Also sometimes the amount you have to pay out before you get Medicaid back can be high, but I did this for years and years because Medicaid coverage was well worth it.
I have gone off of all DMT's because I have progressed to SPMS and my MRI's are stable and have been for a couple of years. The DMT's were not helping with the damage that my MS had already done to me and were not keeping me from getting worse. I am now 54, have SPMS, and no new lesions or active lesions for 3 years. Unfortunately, according to my neuro that will not stop my symptoms from getting worse and progressing. the damage has been done and will continue to get worse as time goes on. I have had MS for more than 25 yrs. I have way too many allergic reactions and bad side effects from the DMT's so I stopped taking them. My MS is not progressing any faster since I stopped them, it has progressed at a steady pace for the last 6 - 8 yrs. I have only been off DMT's for a year now.
You just described my situation exactly! No DMTs for a year now. No longer feeling like I have the flu for 3-4 days of each week. No skin rashes and strange sensations in my body. So, I am going forward without the meds. Hoping to live a long life to see my family grow up.
I was on DMTs for about 15 years. I've never been diagnosed with anything other than RRM. I did years of Avonex, then Rebif, Copaxone, then was told to stop, as it wasn't helping me as determined by my results, and it turned into life for years such as shot, flue nite, flue continued till the early afternoon of the next shot night. When I stopped, my medicine war chest of drugs for side effects and many other symptoms came crashing down like a house of cards. So it's coming up on a decade that I've been off DMT's and ALL Other Drugs. I went downhill. I was half comatose for over 2 years, not able to even watch TV, Like Brain Fog on Steroids. Stopped eating to fight the Brain Fog. Then juiced fruits and veg's for 1.5 years, then Vitamixed for another year, then re-introduced the Whal's diet (almost), and have been great and not only out of the fog, fatigue greatly improved, and now walk at least 10K/day with cane. Actually seeing such things as "permanent" vision loss accumulated from 7x optic neuritis residuals go away! Fatigue has improved greatly..... So in short. I stopped due to not tolerating the DMT's towards the end. Lost lots of problems thought to be side effects of the DMT's fast (over the next yr), then progressed to comatose, then brought back and better than ever with MS by Nutrition. My suggestion: Go Directly Into Nutrition Crazy Mode and skip the going downhill mode altogether, and into the getting better mode by Nutrition AND Exercise. I couldn't do 1000 steps a day. Now I do a minimum of 10K, and am averaging closer to 20K now! And my neuro told me my relapses were likely over!
I have heard that people do well on LDN . It's not a DMT, but you need an RX for it. It stands for low dose??? Last word escapes me. Someone else chime in please. Seems like it is used by CalfeeChick
@Kerry0915 I stopped all DMTs August, 2017. I had allergic reactios to each one they gave me. At 70, the nuerologist said there was no other DMT to try due to my very suppressed imune sytem and my age. Told me to find a good pain clinic to deal with my pain, a good counselor to deal with the emotional roller coaster, and a good physical therapist to keep me going. So, I did. I was diagnosed with early stage dementia - right now, that's my biggest challenge. I lack the ability to stay focused, and I failed the math test (which was a bummer, since I was an accountant for 40 years), and I failed the logic part. I have a difficult time following plots of movies, and can no longer read due to blurry vision. I walk with a cane, and try to walk 1,000 steps a day, but fatigue and back spasms make me stop. I am trying to do gentle exerices, but everything came to a halt Christmas day. Chronic bronchitis flare up, put on steroids, then double pneumonia, and antibiotics, now bronchitis and larngyitis. I guess MS is slowing down the healing process. But, as for the DMTs, I am done with them forever. I do try, like others, to follow a very healthy diet of fruits, veggies, and fish. Being nauseated for a month has hindered that somewhat. And I take a lot of supplemnts, esp. the l-methylfolate calcium 15 mg for my MTHR mutation. It does help me assimilate my anti-depression, anti-insomnia, and muscle relaxants. I am down to the basic 5 meds, instead of the 21 the specialists had me on last year. I am taking one week at a time.
DMT Chart Update
What was your first DMT?
MAYZENT! I've been approved for the brand new DMT called mayzent!
