DMD Users: How's your therapy treating you?

[sllowe]

Hey all,

We have our handy go-to DMD User lists that gets bumped from time-to-time, but I've been thinking us regular users haven't discussed our therapy with each other lately. As regulars we typically provide input to new users, and don't discuss what we go through after years of using.

Have you come across any new obstacles physically? If so, how did you overcome? Mental obstacles? Are your MRIs stable? And, what of your relapses? Any trends? Or something else you want to talk about like the biology of it all?

I'll admit I've been burnt out on mine in past months. I know I need to stay the course, but need a kick in the butt from time-to-time to do so.

What's up with you and yours?

[sllowe]

You do. Surely the doc will want you on something - maybe he'll get you on the new oral!
-shell

[maxthecat43]

I sometimes wish I could "kick my neurologist in the butt", but he really does mean well...  I haven't been on a dmd since last July.  Since then I've had two regular relapses, and another bout of optic neuritis (I had forgotten how miserable that was!)  But he just doesn't think my MS is aggressive enough to justify Tysabri, and the injectables didn't work for me.  Do I have the right to force the issue?  Not sure.

[sllowe]

You know me so well! Yes! Do need that kick in the butt....

Great sharing all - it's nice to hear others path :)

[twopack]

Need a little encouragement (kick in the butt)?  The neuro presenter tonight also told us that Cleveland Clinic reports they have MS patients in their 70’s (even late 70’s) who are STILL being helped by interferon treatment!  So, hey(!) hang in there and don’t forget how far your therapy has brought you.

This came up btw when a question was asked about whether the doc thought seniors might be denied treatment in the future as a means to conserve limited public financial resources.  Based on the CC report he didn’t think it could be justified.

[twopack]

I recently passed the three year mark on Copaxone.  The last MRI I had was over a year ago - little change, no new lesions at that time.  I won’t be having any more because they won’t do one with the pacemaker I had inserted last year.

I’ve been relatively stable with no obvious exacerbations since May of 2011.  I have experienced a decrease in my functional abilities but it isn’t clear that’s a direct result of MS.  There’s a good chance what I’m dealing with now are expanded autonomic symptoms from MS damage of the past.

I did start to notice some lipoatrophy.  Honestly, I think I got a little careless with my injection technique for a while.  It hasn’t gotten worse since I cleaned up my act.  Speaking of that, I was super vigilant about my injection schedule the first 18 months or so - to the point that my neuro teased me about it!  

When the pacemaker went in I got quite far off track (just couldn’t handle more than the heart thing at that time).  When I got back to it I experienced site reactions all over again - NOT as bad as originally but it was there until I had re-established my regular routine for a couple of weeks.  Starting up again I tended to ‘forget’ about injecting until I was already relaxing in bed and I sure didn’t want to get back out of bed.  So I moved my injection pack to a place where I can reach it without getting up!  Crazy but it works - most of the time.  If I miss a dose once in a while now I don’t beat myself up about it.  But I do remember the price I paid with increased site reactions after that first (and only) break and it keeps me honest.

I went to a presentation tonight where the neuro predicted less frequent Copaxone dosing (3X/week) could be approved by the FDA later this year.  I’d be willing to give that a try but my plan otherwise is to stick with this disease modifier unless I see definitive signs it stops being effective.  I hate to mess with things that don’t seem to be broke.

[msmomx2]

Copaxone since June of 2012...not too long I know BUTmy 6 month MRI showed NO new lesions.  I will say though I have been seeing an accupuncturist and a natropath as well as my MS Doc (who I LOVE BTW) just to try to keep the rest of my body the healthiest I can.  I have seen some improvement in balance and in my energy levels that I will accredit to the "granola" medicine stuff but I think the Copaxone is working for me.  I do still get a welt of itchy spotonce a week or so if I do not have my auto inject set right....No panic attac issues as of yet.  I also always do my shot right before I jump in to bed so that I am ready to sleep and try to relax.
I am very interested in some of the new drug developments - hope there is something to help us all!

[Mummy76]

I started on Copaxone in March 2012.  I hated giving myself the injections but overall thought things were going pretty well.  My 6 month MRI showed no new lesions but my neurologist feels that I recently had a relapse and since I'm not having a gret time with the injections, she feels it's time to start me on Gilenya.  I'm excited and terrified in equal parts over this switch.

[sllowe]

bump

[sllowe]

Hi there,

Nice to see you! Congratulations on walking after 2 years. I'm sure that was challenging to say the least. If you told us, I did not remember, so I'm very excited to read this. I very much believe in the interferons, and beta has been around the longest - it's record proven for those it works on.

This is great progress, How is your strenth now? Any better? Beth I hope it continues for you. Glad you popped on and hope you stay in touch.

(((Hugs)))
shell

[maestro1959]

I began using Betaseron at the end of September 2012, so I am just reaching the 6 month mark.  I have not had any MRI's since August 2012 when I spent 12 days in the hospital with a very bad flare.  I was originally diagnosed with Primary Progressive MS in July 2010, as I had never really had any flares.  I had a closed head injury in November 2009 that caused balance and headache issues.  That is when they found 30 + lesions, and the diagnosis.

I have felt fairly good since starting Betaseron.  After 2 years in a wheelchair, I began walking this past Thanksgiving, having regained some strength and balance.

Once in a while I forget to inject, but catch up the following day.  Otherwise, I find it quite simple.

Most sincerely, Beth

[sllowe]

For those who have posted so far - lesions are stable for most? Meaning no major increase? And from what you mention you've had relapses, but no more than pre-DMD?  

If so, then it's the same for me, though I haven't had any major relapses (knock on wood). And, my last MRIs are stable.  

Who else? Our disease modifier list/discussion is huge, and only a handful of us posted here.

Would love to see more who have been on modifiers for awhile respond :)

[Mike_Shuswap]

I've been using Rebif for almost 3 years now. I find I still have to take a couple extra strength Tylenol before injecting to avoid side effects, like fever and headache.

I've had a couple relapses in the last couple years, the last one a couple months ago presented as extreme banding pain (hug) that lasted over a week.

I've never fully recovered from my first known relapse in 2009, and have not been able to work since then. I use a cane almost all the time now when I leave the house.

I think Rebif is likely helping to slow my disease progression, but who knows. I would never consider not doing anything.

As far as injection devices, I favour the Rebislide (pen like device). I've also used the Remismart, ( a battery powered multi dose injection device) and pre-filled single dose syringes.

Mike

[kwarendorf]

"too early to tell whether the Copaxone stopped the lesions, or it is just my natural disease course."

Jane- I've had the same thought about Tysabri. I came to the conclusion that I really didn't care :-) I've been relapse free since summer 2011. But my relapse prior to that was Spring 2009. If I make it through the summer then I will give the credit to Tysabri.

Then again my lack of relapses could be due to the fact that I have SPMS...

Kyle

[kwarendorf]

Welcome to the light :-) It's nice to have you here.

Kyle

[immisceo]

Great question! Okay, bizarrely this will come up as my first post. I was on here in January 2011 shortly after being diagnosed, but it was a strange time for me so that account went buh-bye. But I've 'lurked' for ages, so now's a good time to jump back in!

Shortly after diagnosis, I began the screening process to be on a drug trial. Hard to believe, I'm now on week 106! If anyone's curious, it's this one. http://clinicaltrials.gov/ct2/show/NCT01064401 The short version is I inject myself once a week with something that may or may not be Avonex and I go in once a month and get injected (not an infusion) with something that may or may not be Daclizumab High-Yield Process (or DAC-HYP for the cool kids). I've had several MRIs and get to do n=batteries of fun testing of 'higher functions' like PASATs and SDMTs and the famous 9-hole peg test.

Being a part of the study has been a very positive experience, and I've really relished getting to have so much face-time with neurologists from the earliest moments of my diagnosis. I don't get to see what's on my MRIs at the moment (this is a double-blind study) but as far as my day-to-day life, I've had no relapses since my diagnosing episode. Things are very stable!

I would say though that by FAR the biggest area of adjustment, the one I'm still working on, is the mental health area. I'm sure we're all aware that there's a connection (whether causal or tangential) between MS and depression, but as I had a fairly hefty history with depression before MS came along, I've found it very challenging to find the best way to deal with it now that MS may or may not be a factor. This is still something I'm figuring out. I think finally 'coming out of the shadows' on here and getting in contact with the MS Society here in Dublin are recent big steps I've made in this regard.

[Lulu54]

I was on copaxone for aobut 3 years and made the switch to Tysabri after I began having painful reactins to the injections and as becoming less compliant with the daily shots.  The tysabri seems to be doing the trick - my MRI from last week showed no chnge.

good question, Shell!!!

[debgen]

I was originally on Copaxone for about 2 years. They were the worst 2 years :( I suffered 2 major relapses which I never recovered from. The permanent damage has left me disabled with intense mobility difficulties. Prior to the relapses I was teaching full time and walking independently. I now am on disability, not working. I use a Rollator walker or a cane in my home.

I have been on Gilenya for 3 and a half months now. I really feel so much better. I will not have an MRI for another 3 months but so far, no flare ups!  (knock wood!) I am stronger, have more energy and no more numbness in my hands!

Thanks for bumping this Shelly. It is so useful to see how everyone is doing on their therapy.

Peace to all,
Deb

[JaneK1975]

I started Copaxone on February 2, 2012. It is my first DMD. I had an MRI six months after I started it, and it showed several new lesions (as expected). Last week I had my 1 year MRI and it showed no new lesions (yay!). I am very happy, although I think realistically it is too early to tell whether the Copaxone stopped the lesions, or it is just my natural disease course.

Regarding relapses, although I was newly diagnosed when I started Copaxone, I have been able to identify several relapses which occurred prior to my diagnosis. My best estimation is that I was having a relapse every 1.5 to 2 years. If I get through the next year without an identifiable relapse, that's when I think I'll really know Copaxone is working for me.

Regarding the drudgery of the daily injection, I am used to it now. I still get bruises and lumps, but they are not a big deal at all. However, in spite of how accustomed I am to the shot, I have recently started acting like a big baby if I have to take my shot when I'm tired. I just take it earlier in the day to avoid that feeling. It makes a huge difference. I've taken my shot at work/school many times, and I've also taken it in an airport bathroom.

Well wishes to all,
Jane

[kwarendorf]

I have Tysabri #17 in 2 weeks. It's the only DMD I've ever gotten so I can't compare it to anything. I have had no relapses since I started.

I do have a few accumulated, here for good symptoms; urinary hesitancy, neuropathic foot pain and 2-3 minutes of first thing in the morning diplopia are the big 3. All are being well managed with meds.

I get brain MRI's every 6 months as part of the Tysabri/PML monitoring. There has been nothing new on any of my scans. Speaking of PML monitoring, my doc likes to reassess Tysabri use after 24 months. By that time BG-12 should be available. He says I'm an excellent candidate. I'd rather take another pill twice a day than sacrifice 1/2 of every 4th Sunday for a trip to the infusion center!

Kyle

[SarahL2491]

My 15th Tysabri coming up in 2 weeks, doing ok, a few relapses probably due to stress but nothing to complain about

[doublevision1]

I've been on Copaxone for about five years. I went from three severe relapses in a little over a year, to less frequent, less severe relapses of shorter duration since starting this DMD.  In June, it will be two years since my last relapse.  Generally, my MS is clinically stable.  

Unfortunately some of my symptoms from those early relapses never remitted, namely neuropathic pain in my limbs most severe in my left hand and arm which drives me absolutely nuts at times; Lhermitte's; constant fatigue, at times severe; mild double vision most noticeable when fatigue is severe; occasional bouts of dizziness.  But these things have not really worsened since starting Copaxone.

My MRIs have been the same, no better no worse than pre-DMD.  

I don't find it much trouble to be compliant, and I am more relaxed about missed doses when they happen.  Usually happens when my routine changes, eg if I'm up really late, or if I'm traveling, etc.  I always catch up the next day.

On my last neuro report last summer, my neuro said I was doing 'fair' on Copaxone.  It bothered me a little as I thought, all things considered, I was doing pretty well on it, meaning stable, no worse.  I didn't think the relapses I'd had since starting on it were alarming, since I don't expect I to stop relapses entirely.  My neuro always reminds me of that.  I was going to discuss it with him at my appt in April, but I won't be seeing him again as I have moved.  Will be interesting to get a different neuro's take on things.

I'm interested to hear how others are doing.  Good idea for a thread, Shell!