The DMD Debachle
 

I wrote the below note in the PPMS/SPMS sticky and thought a thread on how the DMD/CRABs are doing for us, would be good. I would like to open it up for discussion.

What DMD are you on, for how long have you been on it, has your MS progressed (in your eyes) while on it... and how do you feel???

I was first on Copax for two years. Loved it. After my DX year of being back to back flares, my MS was finally stable. Had energy. But I was one of the few that had many of the immediate post injection reactions (IPIRs). When it went from every few months to every few days, was yanked off of that one.

Then I tried Rebif. MRIs were still stable, but did not feel good on it at all! Premedicating with aleve helped some with the flu like symptoms. Fatigue got really bad, and was mad at the whole world 9 days out of 10. Cog fog shot up like a rocket, probably due to the combo of the med effecting my mood and being tired all the time. 10 months into that one, had an allergic reaction to it. No interferons for me now.

Because of what happened above, way too scared to try Ty. Inbetween neuros right now, so in a bit of a waiting game right now.

I was on betaserson for two weeks. When I increased the dose to 50%, I had a nasty allergic reaction. So the neuros said no more interferons. I was then on copaxone for 4 1/2 months. Had six IPIR's in that time accompanied by high temperatures, cold chills, and shaking. Next in my first year journey of MS was tysabri. Had 5 infusions and experienced increasingly severe infusion reactions.Also developed antibodies I decided to try copaxone one more time. On the very first day, I did not have a IPIR but about three hours after the injection my temperature shot up to 103. So both my neuro and shared Solutions decided that was rather unusual:rolleyes: and I was told to stop injections. So that is my experience with DMD's. The next step in my journey will probably be whatever oral med is approved first. On the other hand I have been stable for the past two years -- so maybe not!

I'm 53, PPMS, in a chair, did Rebif, tried Novantrone, compounded 4-AP. No side effects but no help either. I now won't get MRIs anymore (Why? Not like they can do anything except tell me, yeah you still got MS, well, duh.), Try to use a minimum of meds. Not anti-doctor if it's needed but choose when I go, not their "MS" time schedule.

After first being dx in 2006, I began Betaseron. I had my 3 month follow up, and my liver enzymes were thru the roof! I set a clinic record. I didnt feel badly, but it was clear, I needed to be pulled from the med.

I have been on Copaxone since that time, and it took more than a year to start working with me. They clinic was ready to pull me from the drug, and finally about 14 months in, it was clear it was having a stablizing effect on my MRIs. fast forward 2 years, almost 3 and I feel MISERABLE on this stuff. I cant focus, I am easily distracted. I am more heat intolerant, I am grouchy, and feel angry at the world. How do I know its the C? when I stop, ALL these sx go away!

I dont feel that C is helping or hurting me, other than the side effects. The clinics keep telling me that since I couldnt tolerate an interferon, that ALL other interferons are out of the question for me. Inc Ty! I cant take LDN because I take narc meds, and cant give them up. I stick with the c because, its either this or...hiC or Novatrone. Since I did so much chemo in the past, I doubt I would qualify for novatrone or HiC anyway.

I do feel my MS is progressing, and now we are playing the SPMS vs RRMS and the CNS vs ANS MS game. I hate this silly disease.

I can't tell you how much I appreciate all your responses and DMD stories. I helps me to know you better and feel your pain.

I believe it helps us all....Keep them coming!!!!:grouphug:

Was on Copaxone for 1 1/2 years...and was getting increasingly severe symptoms. so neuro decided with me that I am off of the C and on to a clinical study next month...it's a B cell agonist, which he feels may work better considering the sxs.
I love not taking shots, but hate how my sxs have increasingly gotten worse.:(

Wow after reading your horror stories I guess I should count my blessings. I started Copaxone 5 years ago right after diagnosis. My MRIs are stable, or as stable as an imperfect process can be and I don't have any issues with the injections other than local site reactions and some dents in my legs.

As for my daily MS I'm still able to work like a dog but I'm tired all the time when I'm not working and need about 10 hours of sleep each night. Have times of minor nerve pain, paresthesia, increasing bladder issues and some bowel urgency, yippee. :mad:

I'm too afraid not to work as much as I do because I think not having the income I am used to would actually be more stressful for me than working is. Sucks that at 45 I should even have to worry about this kind of *****.

My first DMD was C. I stuck with it (no pun intended! :p) for a year but it wasn't helping me. My MRI showed more lesions. From that I went to Betaseron. The side effects were terrible and my next MRI showed more lesions. I decided to go off of all DMD's and give LDN a try. I felt so much better within just a few days of beginning it. Like Sally said, it's not a cure and shouldn't be thought of as one......but it certainly made me feel better. I have learned throughout this journey with MS that I know my body better than any doctor or specialist does. I listen to them and then make my own decision about which meds to take and which ones I don't want to subject myself to. Guess I got tired of being a guinea pig. :rolleyes: I really don't care if my Neuro thinks LDN is a viable choice in my fight with MS. It works for me and that's all that matters. :)

I'm back on Copaxone again as of about mid January or so. I was on Avonex first at DX for 18 months, in a clinical trial, and that only worked so-so for me. I still got new symptoms while on it. Switched to Rebif for only five months because I developed severe depression and anxiety while taking it and anti-depressants didn't help at all.

Then it was Copaxone for 18 months and it worked pretty good. I switched to Tysabri (stayed on it about three years or so) because of all the good things I had heard about it. But it didn't work as well for me as Copaxone ... so I'm back on it and plan to "stick" with it for the long run. It has a very long track record of safety and it's working so I'm hoping it keeps working for me. I'm still working 40+ hours per week and working my heinie off too, lol.

I was on Avonex for 3 years. I didn't mind doing the shot but had problems with flulike symptoms in the first year or so. I never missed a shot. In the third year some "bowel urgency" issues I'd had began getting noticeably worse. Then one night a few hours after the shot I passed out and fell.

Interferons were out for me from then on, and after a year or two of thinking about it (these things take time:wink:), I decided to try Copaxone.

It was going beautifully, I thought, but some time in this last year--my third year on Copaxone--I again began having big problems with "bowel urgency."

This was getting too uncomfortable and too hard to deal with, and so I went off Copaxone about a week ago.

If I thought there was a remote chance it would help me, I'd stay on it, but I don't think there's any real likelihood. They don't know enough about what these drugs do to people my age, people who've had MS as long as I have (over 30 years), or people with SPMS.

In fact, I've never found any evidence that they've studied what the ABCR drugs do to people with progressive forms of MS other than a few that say they don't help.

Also, I live alone. The IPIR some people have while on Copaxone never happened to me, but I was always concerned that it might. I know it's rare, and I know some people sail on through it. I have two phones and a cellphone and an emergency pullcord in my apartment but still--who wants to go to the ER?

Like Kitty says, no one knows how I feel better than me. I've had neurologists, who could and some who could not, get out of their boxes and/or really listen to me and my wants and needs. Doctors I see maybe every 6 months and know my name cause they read it on my chart as they come in to see me. Very anti-doctor right now except my female PCP.

I agree, kicker.

Spending a few years with your own MS may not make a person an expert on MS but it does make you an expert on what your body is capable of--and it teaches you always to be ready for something weird and unexpected to happen.

I'm always surprised at how much medicine people with MS are taking--and some of the rx's can have a big effect on the nervous system.

I try to tell myself these people are having a rougher time than I have and therefore must need all those meds.

On the other hand, I also see lots of people on boards who have an astonishing trust in their doctors, whom they have such a high regard for that they will do and take whatever the doctor says.

I'm all for trusting one's doctor, but there's a lot to be said for checking up on whatever advice he/she gives and whatever meds are prescribed--and thinking seriously about whether you really need them.

After all, everything you take in is going to have an effect on YOUR body.

I am my own best advocate. As an ex special-needs teacher, I always told the parent's "YOU are your child's best advocate and then me." When my own kids were small, I was their best advocate in everything, a job I took very seriously. Now, it's me for me,

When someone believes and trust their doctor 100% without question or involvement. I get concerned. Trust is good, but blind??? When someone asked DH how I was, he said "no Medicines help" (I'm PPMS.) Get better medicine, she replied. He tried to explain there were none. Get a better doctor she said. Like MS is that easy. There is not a pill for everything that ails you. My SIL (Who went through Ovarian Cancer) told me "You go on this journey alone. If you're lucky someone holds your hand sometimes. But you still go on alone."

Okay, I'll join in. :)
I did Avonex for a year. I had terrible flu-like symptoms that lasted longer than the MS doctor could explain. Each week I took it on Friday night and because I worked 40+ hours.

But on the weekend I was like a zombie. I had chills and fever, aches and pains until almost time for the next shot. We tried everything (dr) to pre-medicate, even one prednisone before and after each shot. Nada!

He always tested my blood every three months. My Liver enzymes went rather high and with the flu not leaving, he switched me to Copaxone, said no interferons for me.

I was having relapses 3 to 4 times a year on Avonex, getting residual damage. It did nothing for me, maybe made me worse. :cool:

On the Copaxone the shot was easy, and worked okay since I had no side effects. Then after 3 years I had terrible site reactions for 6 months. I also had a infection get passed the Copaxone surveillance system, and got really sick and almost septic. High temp. and allergic reaction. SS Pharma, did say they changed the ingredients in the "C" about that time. Hmm

I went to about 6 different doctors to clear the infection even though I stopped the "C".

I thought it helped after the first 6 months on it, but the MRI's showed enhancement in the brain and a new brainstem lesion while on the "C".

Perhaps one at C-2 or it might have been artifact on the MRI, that artifact showed up two more times, so it might be a lesion, not a ghost shot.

I went off all DMD's in late 2004-5, and in 2007 weaned off Neurontin. I still was having two attacks a year that were from heck.

I felt so much better taking control of my body and not doing any more drugs except Klonopin for my tremors and HRT since I was neutered young.;)

I was offered Ty, but said no. I wanted to clear out my system of drugs. By 2008 I was ready and decided to try LDN. I am very happy with it and have seen many improvements.:)

I still have the MS hug with more use of my arm, back muscles by about dinner times.

The burning feet, legs, still is bad, but I won't take anything for it, because I tried and lots of meds and nothing works for that for me. I deal with it.

Funny you can get used to pain, if you just try to ignore it. It is there hours two hours or less. LDN I think helps with pain because it lessens the pain, or it may be the higher endorphins blocking the pain, I don't know.

My fatigue is a big issue and I hate to nap, but that works for me. No med has helped that either. I plan to get the CCSVI sometime in the future, before I get too old for them to do it. :D I believe it plays a big part in my problems.

When exhausted, I get cog-fog, and I may limp and have my left foot swing out. Not foot drop just lack of energy when I do too much. Then all my issues haunt me until I nap right away.

That's when I feel so darn tired I could fall on my face. :) The nap helps recoup my energy. But then I go to bed late and sleep late, which I don't care for, oh well. Life is what it is.

I agree and thank you for thinking to start it! It has been very interesting to read about everyone's unique experiences. :grouphug:

I still have a file on all the research I did on the DMD trials in the late 80's and early 90's...

I was in the lottery for Betaseron when it got approved in 1993. I drew a number in the 27,000's and was told it would be 15 more months. I lost interest.

I had an MRI in 2003 and my lesion count shot up to over 30. I got scared. I even got my copaxone prescription filled twice. I took maybe 20 shots. No - the shot thing is not for me.

So no more MRI's for me. I don't want to know.

Ignorance is bliss...

Tom

I posted a thread back in March about my issues with Copaxone and anxiety.

I was diagnosed with R/R back in 2005, but probably had mild flares well before that. On Copaxone for about four years before I stopped taking it (will be informing the neuro in a couple weeks--*gulp*).

No flares or improvement in five years, just the same symptoms that come and go, get worse, get better. I suppose I'm SPMS. I'm not happy about that, but if so, at least the decision about further poisoning myself is somewhat taken out of my paws.

i've been on copaxone for 7 yrs, since i was dx'd in '03,
i don't know if it's the med or my MS but i havn't had a single relapse.
my neuro thought i'd be in a wheelchair by now but i'm not.

i've been relatively stable. i feel the MS effects but i walk with a cane, or walker, or take my scooter.

so for me the copaxone has been good. and, my mri's have been stable.

I started on Rebif shortly after dx in 2005. We added Imuran to the mix. Then pulse (monthly) IVSM.

Over 16 months I had about 5 or 6 exacerbations, and as many 3- or 5-day IVSM treatments.

My MRI was lit up like a Christmas tree and I was very symptomatic. Testing showed I had developed neutralizing antibodies to Rebif. Might as well have been shooting tap water.

I stopped Imuran in Oct. 2006 and Rebif in November 2006.

I started Tysabri in February 2007. Hardest and best decision I ever made. For 30 months I sometimes felt as if I didn't even have MS anymore. The only symptom that lingered was a numb big toe! My MRI's were spectacular. Many of my lesions shrunk or disappeared. None were enhancing. I felt great.

After 36 infusions my doctor and I decided to take a 'holiday' from Tysabri, mostly because the manufacturer was no longer forthcoming in publishing 'adverse effects' (instances of PML and outcomes from treatment). We felt that we could no longer make informed decisions about continuing Ty.

I stopped Ty in October 2009. Things were okay for about 6 weeks, then I slowly started sliding downhill. I haven't had a flare, but a lot of my symptoms came creeping back (numbness to the knee and in the hands, cog fog, fatigue, etc.)

I started Copaxone in December 2009, just to be on something. I had an MRI about 2 weeks ago that showed 7 new lesions, some enhancing. Which explains why I'm feeling like doodoo.

I am going back on Ty as soon as the paperwork can be re-filed. My neuro promises to watch me like a hawk, and I trust him.

I have too many good things going on in my life right now to miss out on them because of how I am feeling. I look forward to feeling better soon. (fingers crossed)

That's my story and I'm sticking to it! :)

I was diagnosed in Jan 2010, researched the DMD....read many forums of people on the various CRABS.....and chose none!!

I started LDN in March 2010.