When I gave up Copaxone due to being told I had Progressive MS I felt very sad.
Mike, don't know you, but I just read your post, your emotions ring out loud and clear, and I just wanted to say I'm sorry you're getting this news.
I hope you're getting support right now - you've got it here in this forum for starters. I think from what I remember of posts that there are others with progressive who are doing just fine. Take care.
Hi Mike, I am very sorry to hear this news. I also don't know you but fell bad when I read your post. I hope that your progression is a very slow one. I can understand you have mixed feelings....after all you've been told something that you need to come to terms with in your own way.
Take good care of yourself..... Karry.
Mike, did he change your diagnosis to SPMS or PPMS? Or did he just say you are continuing to progress? I wonder if perhaps the doctor should first try you on a different drug rather than just try REbif and then stop. I'm sorry but I don't remember - Have you had any relapses in the past year or two?
There isn't a whole lot of data about treating SPMS with the DMD's being as effective, but many MS docs will say they feel there is some sort of benefit from staying on one of them. If you're not comfortable with this doctor's opinion, perhaps you should go back and revisit the topic with him and ask to try something other than an interferon.
Just my two cents, I am sorry you are at this crossroad.
Betaseron and Extavia are both approved by Health Canada "....for the treatment of secondary-progressive MS to slow the progression of disability and to reduce the frequency of attacks."
As well, there are more potent drugs, with more serious side effect profiles, that are also used to treat progressive MS, eg:
cyclophosphamide, cyclosporin, imuran and mitoxantrone (for progressive-relapsing MS).
Did your doc discuss any of these options with you? I'm curious as to his rationale to wait a year before further discussing treatment. What is the benefit to you in putting it off?
First and foremost, I am so sorry your MS has progressed. That's got to be a blow for anybody. But I know we have some very strong folks with SPMS and PPMS on here, so you're in good company.
*Previously on Immisceo's rant...*
Wait. So your treatment at the moment is to sit on your hands until next autumn? I realise that nothing is licensed specifically for PPMS, but I find being given this assessment and shown the door to be utterly unacceptable.
You deserve more. There are several second line treatments these days that are prescribed off-label for PPMS. I'm a bit baffled as to why these weren't seriously discussed with you. I would not accept being told to go on DMD exile for an entire year "and THEN we can discuss what to try". Er, no. We discuss this NOW.
It's possible I filled in some of the blanks in what you were saying incorrectly, in which case do I apologise. But the more times I read through your post, the more agitated I got!
I'm sorry to hear this. I do agree with what has been said about treatment. There is not a lot of data unfortunately on the disease modifiers in regards to SPMS or PP, however, and we do know that it works best in it's early phases, however, I'm not so sure I'd quit a modifier w/out some evidence of increased lesion load. And, also like Laura says the new meds, perhaps tysabri? What has the doc said about stopping a DMD?
Thinking of you - as I know it's painful to hear out loud what you've already been thinking.
Yeah, Mike. What they all said. You'll always find support here, sorry to hear all this, and did we read you right: you're stopping after just one DMD attempt? If it was my disease they were talking about, I think I'd try everything they'd let me try, and push to try some more. Just one man's thoughts, FWIW.
My initial diagnosis was SPMS. Me and my doc have been doing everything we can to keep the wolf at bay. First it was Tysabri. When that stopped working we moved to Rituxan. (I'm getting my second dose as I type.)
To do nothing is to admit defeat. I ain't admittin' nuthin'! :-)
Thanks everyone for your comments and concerns!
I'm OK with taking a break from Rebif. In hind site I guess it would have been smarter to continue with the DMD till my next MRI, but when my Neuro suggested stopping Rebif after over three years, I jumped on board.
I have several relatives who have MS and have never taken a DMD, and who's MS sx'x have progressed very slowly, as mine have so far. I will call my MS nurse the minute I think I may be in relapse. I haven't had an actual relapse in a couple years, just slow continuous increase in symptoms.
I have to admit I'm not sure if he changed my dx, or is still just calling it MS.
He never did specify RR, SP, or PPMS on his reports to my GP, always just MS. I'll get a copy of his latest report next month.
I will educate myself on treatments available for progressive MS over the next couple of months and then decide how I want to proceed, but for now I just want to pretend it isn't there and take a breather.:)
Thanks again friends, I value all your caring thoughts!
I echo the others re: DMDs. There are other choices, and I hope your neuro is forward thinking enough to get you on another med, and still "brand" your MS as "RRMS", and not any of the progressive types.
Hang in there, my friend.
Mike - when you say you've had no relapses but continued with progression, does this mean your EDSS score changed? I'm just wondering if this was a measurement used to compare past vs present. I've found my neuros to be inconsistent in their reference to EDSS in my follow up reports.
Hmmm. In the words of Cool Hand Luke, I think when it comes to you and your neuro 'What we have here is a failure to communicate'. To come away from an appointment unsure if they meant 'progressing' or 'progressive' is no small thing. It has quite important implications either way.
I do understand that Rebif wasn't working as either of you had hoped. But if it's 'progressing' versus 'progressive' to me that says 'Copaxone' at the very least - a tried and tested first-line treatment that works in an entirely different way than the interferons. If 'progressive' was meant, to me that means running tests to determine suitability for the orals or infusions. There are so many options out there!
Taking no DMD is a gamble and the house usually wins, regardless of your relatives' fortunate experiences. That is a valid choice for adults of sound mind to make, but I'm still flummoxed by the shoulder shrug your neuro gave you. I understand getting tired of regular injections if they don't seem to be slowing things down, but I don't think I could stand the psychological weight of a zero treatment approach. I'll go even further. If your neuro suggested stopping Rebif without suggesting a different DMD or an immediate plan of action, well that neuro has behaved unethically.
Heh Mike, so sorry to hear about your dx ...
I also have progressive MS, and was on Copaxone for 14 months, and I agree with Alex on this one, I felt sad when they said to stop because I felt like I wanted to still fight.
So, we are starting Avonex within the next 2 weeks. So, it isn't an injection everyday, but once a week, but the side effects are still there, so we will still see how it goes.
I'm not giving in to this, and you should not either. We have to fight back, and be our own Dr. I would keep looking into things, just giving up all DMD's and such just doesn't seem quite right to me.
My opinion only, but we have talked alot over the years, and maybe this will help.
Hoping you will continue to be your own Dr. and keep checking things out.
Good Luck to you,
Give this all a long, hard noodling - thinking about this is tough at times. And then do what you think is best for you - but do it with having all the facts from your doctor, please. You might call the nurse and have a discussion about your status. hugs, Laura
Late to the discusion but I wanted to add my thoughts. I am truly sorry about your MS progressing! I agree with many of those posted before me. Why sit and do nothing to stop your disease?
If it's, SPMS, Tysbari is considered a viable treatment for this. It is in phase II or III studies ( I forget which) but it is why I am on Tysabri.
There are many other treatments as Kyle, doublevision and others pointed out. Please try to confirm what your doc meant by progressing and see what treatment are available. Remembe we are here to help!!!
Hi Mike. I'd like to know about the course of your ms that made the Dr change your diagnosis. You can pm me if you'd prefer. Thanks!
As far as stopping the DMD my Neuro said that he doesn't believe it's helping me any and why continue poking myself for nothing. No other DMD's were discussed, although he said there are many other treatments we could look into next year. For now he wants to just monitor my symptoms. Now that I've been off the injections for over a week I actually feel a little better, no night fevers or sweats, and I feel a little more rested in the morning. Maybe these improvements are all in my head, but I'll take it. I didn't even realise I was still having side effects to the DMD.
I think the word he used was "progressing", not "progressive". He called it something like "the dreaded 'P' word". It didn't dawn on me at the time that there may be a difference. Thanks for pointing this out, Immisceo, I'll see what his report says in about 3 weeks.
We've never talked about my EDSS score. During his exam of me he found my coordination to be worse than a year ago, although my strength has not decreased. All the symptoms on my left side have increased, with muscle tightness/cramping in my foot, hamstring and the back of my upper arm. I told him of my struggles with fatigue, inability to walk as far as last year, increase in frequency of headaches, numbness, etc., etc..
I'll likely give my MS nurse a call once I've seen my Neuro report if I still have any questions about where I stand. Good suggestion Laura.:)
Candy, I wish you the best of luck with Avonex. I hope the side effects are minimal. I'm not giving in to MS, but I am OK with taking a breather and sorting things out for awhile. I'm not usually the type to just sit back and see what happens, but for some reason I'm fine for now with temporarily postponing my next course of action.
Thanks to everyone for your concerns. I wish I had been able to think of all the points you've brought up during my appointment! He gave me and my wife all the time we wanted to ask questions, we just didn't ask enough.
Be well my friends!
Let me introduce myself, my name I Debbie I was diagnosed with PPMS in 2008. I live in MA and am treated at one of Boston's top hospitals. It was explained to me by my Doctor that DMD's are not beneficial for PPMS she has just finished running a study that showed no difference in progression in the people who didn't receive DMD's as to those who had received it.
That being said... She also said why would you want to stick yourself with something that isn't going to make any difference in the long run... I agree with her. Understand that I have never had RRMS therefore I never have so called flairs. I have a continuous slow progression. I have no idea if DMD's are beneficial to SPMS which from what I understand is the next stage after RRMS.
I am not a Doctor so this post is merely my opinion. I feel this decision is solely a decision each person has to make for them self.
I'm glad to hear you are feeling better and wish you luck with whichever road you choose to travel.
~live as if all your dreams came true~
Hi Mike -
I think it is very important that you get straight answers to straight questions. If you ask the doc "Has my MS progressed to SPMS?" you should get a straight answer. It's going to be hard to choose the right path if you don't know the true nature of your MS.
As Debbie said, if you have PPMS then DMDs would seem counterproductive. If you have SPMS there are options available to you.
Another type of MS, albeit the rarest, is progressive relapsing. DMD's may be helpful for this type.
sorry to here that it is progressing, i have had rrms for about 10 years and the last year things have happened, i am on st disability and dr feels i will be on long term soon,i am just about to start on Avonex,i got a new neuro in Kamloops he is the most wonderful man, i was seeing one in Prince George but i feel he should have retired 30 years ago, and the drive to the Loops is ok with me if it means i can see this dr, i am just hoping to slow things down as for right now i can barely walk the pain in my legs is intense, hope all goes well for you
Hi Judy, nice to hear from another BCer. I totally understand why you'd choose to travel a long distance to see a neurologist you're happy with. If I ever decide to quit driving all the way to the UBC MS clinic, I'll make arrangements to go to the Kamloops MS clinic too.
Sorry you're on short term disability, but at least you have this coverage to fall back on. Hopefully your fears of having to go on LTD wont come true. I've been on LTD for over five years now. I had a great job and miss it tremendously.
I hope you can find something to help with your leg pain.
Leg pain has not eased up, it seems i have a really good day and think it is fine and the next day it is back, i do not think i will be going back to work fulltime as i can not stay up without a rest for more than 4 hours.I have a question did you apply for CPP right away when you went off work? and when you did were there problems?,I am so scared that when I go off I will be denied and then I will have to go back to work fulltime,my Dr in the loops is awesome, he works very close with UBC and he validates everything I say to him, there is nothing worse than having a neuro that just shakes his head at everythng you say, my primary gp wants me off work he says i have no quality of life if all i do is work come home eat and go to bed,sometime in the next month i will be filling out my LTD forms i am hoping it will go fine with the company but not sure what exactly they will consider disabled,what type of issues were you having when you went off work?,anyway was good to hear back, take care...judy