SPMSer's - can we still have relapses/flare-ups?

[Seasha]

I seriously don't know what is going on, but from past experiences it feels like I'm having a relapse or flare! I was dx with SP about 3 years ago and didn't think that I'd have a relapse again - (if I can call even call it that).

Am I wrong in my thinking? All I know is that I'm mainly feeling extremely weak and fatigued. (yeah, who isn't?) But this is way beyond any weakness and fatigue I've experienced. My whole body feels inflammed and in turn is making me feel somewhat depressed and my walking is worse than ever. The other day I slept 16 hours!

Any thoughts you can pass onto me will be appreciated and hopefully I will feel less scared.

[skreynolds57]

Seasha,

I'm SPMS and only progressive (no flares, etc.) for 16 years. I maintain that the nomenclature and breakdown of MSers generally undercalculates the number of patients who are actually both progressive and relapsing. Without going into my complete rationale, I observe that many folks I know and know of, exhibit both.

In your case it seems you are in the progressive relapsing category, there isn't a bright line between the two.

[KoKo]

Hi Seasha

SPMSer's - can we still have relapses/flare-ups?

Short answer - yes.

According to the current thinking about SPMS, relapses may still occur.

This link about SPMS explains it better than I could. Be sure to look at the green box on the right to see the differences between SPMS and the other courses of MS:

http://www.nationalmssociety.org/abo...-ms/index.aspx

Take care,
KoKo

[skreynolds57]

KoKo

I guess my problem with the NMSS categories is that when you are only progressive, after being RRMS but no longer having flares, what are you? Stuck being told to try things that work on relapsing MS (i.e. inflammatory attacks) but don't do anything for nerve damage. I just believe its time to revamp the system, its confusing, at best, and inadequate at worst.

[KoKo]

Hey Steve

I understand what you're saying. The reality of MS research is that it's ongoing, and constantly evolving.

The NMSS is pretty good about keeping current. And when new scientific research surfaces, (and confirmed by the scientists/medical community) they're up on it.

I guess my problem with the NMSS categories is that when you are only progressive, after being RRMS but no longer having flares, what are you?

According to the current thinking, the answer to that would be SPMS. A person with SPMS may still have a relapse.

I just believe its time to revamp the system, its confusing, at best, and inadequate at worst.

Steve, I really get what you're saying, but the current thinking is what we have to go on for now, until new research and discoveries are validated.

Also, I don't think the NMSS made those categories up on their own - the MS courses aren't just the NMSS categories. Their job is to educate the public based on the results of world-wide MS research done by experts in the field, and to help support and drive the research.

Take care,
KoKo

[skreynolds57]

KoKo, I agree, the NMSS is not setting this up but the "community" could do a better job in this area. I'm classified as SPMS but have not had a relapse in 16 years, Seasha is SPMS and having them. That unnecessarily imprecise, these folks went to medical school

[Seasha]

Thanks Steve and Koko for the info. Went to NMSS website and found it to be sketchy at best and I don't have the energy to read more into it somewhere else...

I do have an appt w/neuro next week, so will take it from there. She will most likely chew me out - when I saw her last April, I asked to go off Copaxone (tired of doing shots for 11 years and didn't think it was being effective anymore) She said it was my call, but I got the sense she didn't want to me go off it.

Maybe it was helping, maybe not? I am so frustrated and tired of this damn stuff! At this point, who cares what classification I'm in? It's all MS!!!

Now I'm wondering if anyone else is taking a DMD with a dx of SP?

[wkikta]

Your Neuro may never change you from RRMS since that is what the current medications are for and it is believed they do provide some benefit for all MS patients. Many Neuros diagnose all their patients RRMS since it is of no benefit for the patient to categorize the MS, the categories are really for the insurance companies.

[Agent86]

Re: MS Classifications
I still use Copaxone despite having been told I have secondary MS. When I asked, my neuro said he does not believe in categorizing the types of MS.

Agent86

[Kimba22]

My MS specialist explained to me that the inflammatory process becomes less of a factor the further along your disease course of SPMS. The inflammation causes relapses, which is why/ when steroids and even Cytoxan work/ are prescribed. He would only prescribe Cytoxan after reevaluating me after a 3 day couse of IV steroids.

I don't have relapses anymore, but I still have periods where my symptoms are worse. I can usually pin it on stress, temperature changes (hot or cold), fatigue, an infection or illness, or just pushing myself too hard. Overall, now it's just a steady progression downward.

All of my past/ present neuros (which include 3 MS Specialists) have preferred I be on a DMD. They would rather try something and hope it helps, rather than doing nothing at all. I have been on all the CRAB's and Cytoxan. Each doctor has had their own preference, with Rebif, Copaxone, and Tysabri being favored by the neuros I've seen. None of them would prescribe Novantrone, because of it's toxicity on the heart.

I am currently on Copaxone, but may be switching to Gilenya. It is a personal choice to be on a DMD, but I'm still hoping to find something that works to slow down the progression on my MS.

Kim

[redeemed]

Thank you so much for this topic If i may share a little? I was diagnosed in 2005 after 26 yrs of "crazy" symptoms.I like most of us have had a tough go..I was very happy to see this topic because for so many years i was really ms sick..Then in JULY of 2010 I got a break and was feeling the best i had in years..I was so much enjoying this time.

It has been a year since i saw my Neuro Dr. I will call tomorrow. 2 weeks ago The extreme fatigue came back..My legs are so heavy,they burn and my feet have the "pins and needles" My arms are heavy and I just feel really sick..

31 yrs ago my first symptoms were the burning legs..3 yrs non stop..off and on thru the yrs this has been a problem.But this is really bad..I count my blessings that I can walk..does any one understand the symptoms I am describing? Whole body fatigue,heaviness,pain..

Thankyou for listening

[Seasha]

31 yrs ago my first symptoms were the burning legs..3 yrs non stop..off and on thru the yrs this has been a problem.But this is really bad..I count my blessings that I can walk..does any one understand the symptoms I am describing? Whole body fatigue,heaviness,pain..

Thankyou for listening

redeemed - Yes! we can understand your symptoms and we are listening! When I first posted this I was fearful of having a flare, but in hindsight, I believe it was just a period of worsening symptoms. Now, I am just living with various degrees of whole body fatigue, heaviness and pain and think it has a lot to do with what's happening in my life at the moment. Example: hosted a birthday party and the next day was completely and utterly wiped out!!!

Yes, I am still mobile but regardless sometimes it's so hard to just "go with the flow"~~sigh~~

[tellnhelen]

My neuro classified me as Progressive Relapsing. I'm still having relapses even though I was Secondary Progressive. I current catagory seems more descriptive

[Thinkimjob]

I'm SP, I think. Doctor said no point calling it RR, or our health system won't let you have Copaxone etc on our discount drug system, the PBS, anymore. My question was what was the point of staying on Copaxone if the drug hadn't stopped the progression.
I say SP because my walking, balance, energy, strength etc keeps getting slowly worse.
Ah, but you're still having flares, she said.
Which I thought the drugs were supposed to stop by 30%.
This year has been one long flare after the other. Two long lots of steroids, a week or two of feeling passable, then straight back into it again.
I know the DMDs are supposed to work, but I really don't believe they have much impact on the natural progress of your MS.
And once you get to a certain point, there's not much anyone can do for you. Yes, Tysabri, but incurable, fatal encephalitis as a fairly high risk to take.

[MrsBones]

My question was what was the point of staying on Copaxone if the drug hadn't stopped the progression.
I say SP because my walking, balance, energy, strength etc keeps getting slowly worse.
Ah, but you're still having flares, she said.

Which I thought the drugs were supposed to stop by 30%.
This year has been one long flare after the other. Two long lots of steroids, a week or two of feeling passable, then straight back into it again.

DMDs really are tricky when you think of their use with any progressive type of MS. There have been some small studies that indicate they may benefit progressive types of MS, but very little hard evidence since they have no visual that can be agreed upon just yet for the type of damage done by that type of disease activity. The inflammatory activity can be seen on MRI in the form of lesions, but there isn't anything like that yet for the purely neurodegenerative, non-inflammatory type of damage.

Basically, we can show, using MRI, that they seem to make a difference in lesions. We can count the number of relapses on vs off the drug to show that in relapsing forms, there seems to be a difference in activity. With progressive forms and those that mix the 2 (PRMS and transitional SPMS which behaves like PRMS before the relapses stop) there's nothing to see or count, so we can't really tell yet if they do anything for progression.

When we consider the often quoted "30%", we have to remember what that 30% actually means. On average, the group taking the actual drug had 30% less relapses than the placebo group. For example, say the placebo group's relapses averaged out to 10 ( it was actually 1.something, but for the sake of clarity and easy math, we're going with 10 ). This means the group on the drug on average, had 7, 30% less than placebo group.

This doesn't mean that as an individual we could expect 30% less relapses or that the drug reduces relapses strictly by 30%, no better or worse. We may have none at all or more than we had before the drug.

My point is, no matter what type you have, you may benefit from use of a DMD. It's a gamble we all must decide to take or not take.

I have PRMS and I chose to take the gamble. For right now, I think it's worth taking that chance.