So, after these last two exacerbations my neurologist has given up on Tecfidera. The hospital neurologist who raised the issue and my neurologist met, along with my nurse-practitioner, and decided that in my case, the drug was not helping, and that at my age (soon to be 72), it is likely the Tecfidera is doing more harm than good. So once again I'm not taking any MS drug. I"ve given up worrying about it. "What will be, will be....". You all have stayed with me through these last few years of one flare after another, one MS-related or complicated illness after another...so I'm at peace just going for as long as I can, then quietly slipping into that good night.....
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Catdancer, I'm so sorry that yet another drug didn't do right by you. Since they don't seem to know a lot about these drugs, a person sometimes might wonder if they actually make some people worse. If they don't know which people will get better (or how much better or for how long), how do they know that for some people--people who've had MS for quite a while, for instance--the drugs might not cause flares that wouldn't have happened otherwise?
I'm just saying that the drugs are still unpredictable, and anyone who takes them is venturing into little-known territory. MS is such a weird and devastating disease that I'm really hesitant to do that, given my age.
So there are others here with you who are just letting MS do its thing--trying like ten devils to keep it from getting in our way too much but just realizing that "it is what it is."SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24. -
I know this has to be discouraging. Have you and your Dr. considered Ocrevus or Rituxan? I have not had a relapse in the three years since I have regularly gotten 4 doses of Rituxan a year but prior to that would relapse within 5-7 months of coming off a DMT (Rebif, Tecfidera, Cytoxan). It also, just so you are aware, was over a year (after my 5th or 6 dose) that I began to feel a bit better and over the next few months saw the symptoms of the most recent relapse 2 years earlier begin to lessen and peel back. This past year has been as stable as any I have seen in the past two decades.Comment
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A study of 400 RRMS patients in Sweden taking Tecfidera showed that many of them stopped taking it after 2 years, with the majority changing to rituximab:Only registered and activated users can see links., Click Here To Register...Last edited by agate; 01-31-2019, 09:57 AM.SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.Comment
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Cat, you might could mention to your Doctors what Cherie has had to say.
If you can't get a DMD you will be joining many on this board. There are a number of people on here, such as Agate, who either don't want one or can't get one.
Please do not say you "will slip quietly into that good night". As Agate said fight like "10 devils".
Some people seem to do pretty well without the drugs. If they do not try another one with you, I hope you will be one of those people.
Sunshine, has been doing IVIG for quite awhile. However, she has to go quite often. In your circumstances and the distance that TC would have to go I don't know how you would feel about that. She does keep going on it and gets a boost of energy, which is always good.VirginiaComment
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Cat, I'm 65, and have never taken a DMT in the 20 years I have had MS, yet I still walk, and drive. We are all so different, I don't know how they can ever develop any drug to treat a disease that they don't even know what the root cause of it is."Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."
Albert EinsteinComment
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Neither of those has been suggested. Are you diagnoses as spms, or rrms?Originally posted by Cherie View PostComment
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Cat, I believe that Lazarus is now SPMS and she also takes Rituximab, with success.Originally posted by Catdancer View Post
It has been found effective in SPMS:
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I am 72 also. Have you discussed rituxan? I brought it to the attention of my doc and when he researched it we started. I have been SPMS for years.Originally posted by Catdancer View Post
There are great safety statistics on rituxan and side effects are extremely rare. Sunshine does IVIg which I also took for many years. Again, it is a blood product and has a great safety record and very limited side effects. In fact, the side effects of both drugs are the positive impact on MS.Last edited by Lazarus; 01-31-2019, 02:23 PM.Linda~~~~
Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..Comment
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I just posted without reading your post first. Yes, I am SPMS.Originally posted by SuzE-Q View PostLinda~~~~
Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..Comment
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I was rrms for years then when I could no longer afford Rebif copays and went off med had a whopper of a relapse and never really fully recovered so after a little over a year my doc thought I might be transitioning to spms. It has now been 2 and a half years since then and I am back to that pre-relapse baseline again so technically I guess RRMS and not SPMS. That is not to say that symptoms don't worsen when I am fatigued or have a cold like now. Maybe I am in denial but I've had this for at least 43 or 44 years and when I have been on meds have responded well. I am grateful it is not worse and hope you will speak to your doctor about these options if you are concerned. You have had your share lately and I would hate to see you back in a rehab facility for both your sake and TC's.Originally posted by Catdancer View PostComment
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Oh man, Cat. This is tough news.
Before going off med completely, maybe Rituxan or Ocrevus?Comment
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Cat,
There's also siponimod, a new oral treatment for SPMS that will likely be approved by the FDA very soon:
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