Are We Happy With Our MS DMDs
 

Everyone is on something different and some are not on anything. So How Happy or satisfied are we.

I tried Avonex and Copaxone in the past and I just kept having flare after flare after flare and progressed right along to SPMS. So, needless to say, I was not happy with that.:mad:

Four years ago I discovered LDN (Low Dose Naltrexone). By that time I was already SPMS, so I haven't had the miraculous results that some PwMS have had, but enough improvement and NO progression, that has kept me on it for these four years.:D

From what I understand, the ABCRs, Tysabri, Navatrone and many of the new MDMs are supposed to reduce MS flares(exacerbations) and thus slow the progression, about 35% of the time or in 35% of the people?? Not good odds but better than nuttin.;)

So, how is your DMD working for you? And if you are on no DMD, how is that working for you? And, if you are in Trial for a new MED, how is that working for you.

Are you Happy or are you Pi$$ed and not going to take it anymore.:D

Remember, we're together in this.:grouphug:

Boy, Sal, you really struck a chord with me on this one. I've been on C for the last 6 or so years and I swear that it directly coincided with my new thrust of progression. It's as if the minute I started on it, this long, slow downhill slide took over.

I haven't had any major attacks on it, but I just keep getting steadily worse. My attacks were all massive, and many months at a time. It's so hard to know when there is no conclusive way to determine what it is or is not doing for/to me.

I hate the not knowing.

I have never used the DMDs......now how many times have many of you read that:p

I have been at peace with my decision for a long time. Diagnosed for 21 years and I have had 5 exacerbations in that time.... I have been darn lucky with this disease.

I don't think the DMDs could have improved on my rate of relapse and that is exactly what my neuro told me.

Am I happy or sad with my med choice? Neither. The only thing that I have to go on is that I've small attacks and recovered. Dunno if I can attribute to or blame my med for that.

Well Sally, all I can say is I've tried Beta, Tysabri, and Copaxone. I was still having a lot of exacerbations will good recovery after each other, but no new lesions. Copaxone was a disaster for me. Major major fatigue. So that was not an option to return to after Tysabri was pulled.

My MRI has been stable since my dx in 2001. No explanation for that except maybe they aren't showing up YET!

So since my insurance company in their infinite wisdom decided that Tysabri was too expensive and disallowed it for me, I chose a different path - the clinical trial path of Tovaxin.

I am very happy with my choice and have a year to find out if I am on placebo or the real thing since it is a double blind study. Once the study is unblinded, we all have the option of receiving on year of free drug.

In the meantime, I am hoping for a reduction in exacerbations! One less per year would be great! Fewer IVSM in this poor body is what I asked for from Santa. So far, so good! ;)

Good question!

Hi Sally,

I've tried Avonex, Rebif and Copaxone. The first two contributed to my depression a LOT. I was miserable on them. Copaxone increased my pain and anxiety. I have been slowly getting worse in the past 4-5 years.

Today I signed up for Tysabri. I hope I do ok on it. If I do, I would like to stay on it for maybe two years, and then maybe switch to one of the newer meds when they start getting approved.

Campath is supposed to be another really good one according to my neuro. That's a once a year infusion and has had spectacular results compared to all the others. There's supposed to be a trial starting late this year (I think.)

I have tried A, C & R in that order. With A & R had such prob w/fevers that it wasn't worth it. I stayed on each for 6 months.

In between I tried C along with Imuran. As posted elsewhere today, C caused so much body dents that after a couple years I was taken off and stayed on the Imuran.

I stopped when I moved out here. Suffered through R in 2/06 thru 6/06. After 1st exacerbation in nearly 6 years. I took generic tylenol every 4 hours (yes I set an alarm) day and night to keep fever at bay on R.

After a year with several episodes that flared and recovered got doc to put me on Imuran in 12/06. I've still got intense hand pain that has not been relieved, yet.

Congrats Wiz on the Tysabri! ;)

Thanks Cheryl,

The doctor was extremely disappointed with me dropping out of the CDP323 trial waiting list, but he'll get over it... :nopity: :rolleyes:

BTW, I sent you a PM.

I began the journey with Avonex. I was happy to be on that until my liver tests started coming back with elevated ALT and AST. Also, it wasn't helping to minimize lesions showing up on MRI.

I switched to Copaxone. I was really happy with that until I started (only recently) to notice the body dents. I've only been on it a year. It does appear to be doing the job it's supposed to do however, with regard to staving off exacerbations.

That said, I don't like that my choices are: 1. ruining my inside-body by damaging my liver, or 2. ruining my outside-body by creating deformity.

I'm not sure at this point I really want to live with either of those two solutions and am SERIOUSLY considering going off meds all together.

3 weeks ago it was a completely different story but today, I'm ready to ditch the meds. We'll see how I feel in a week or two but really, I may not be up for this.

:-/ sigh.

becca44

It just sucks all the way around doesn't it.....you feel like your damned if you do and damned if you don't:hug:

Originally Posted by Becca44 http://neurotalk.psychcentral.com/im...s/viewpost.gif
I'm not sure at this point I really want to live with either of those two solutions and am SERIOUSLY considering going off meds all together.

3 weeks ago it was a completely different story but today, I'm ready to ditch the meds. We'll see how I feel in a week or two but really, I may not be up for this.

:-/ sigh.

becca44

AMEN!!

More and more PwMS are coming to this conclusion, Becca. You are not alone and some Doctors are agreeing.

Ain't that the truth, hon??? Oy.

Thanks for the hug. :Tip-Hat:

...and I'm going to follow MSAcorn's suggestion and look into imuran, see what that's all about.

Yes you are right! He will get over it!

;)

:mfr_wha: Oh, you said, "AMEN" my bad.


Is this true, Sal? I'm seriously thinking about it too. Can't do the interferons and I think C has messed me up. Have you seen an article that dealt specifically with this issue?

Hi, I am currently (as of Sept 2006) using Betaseron. Before that was one year of Avonex and then five years of Copaxone.

My problem is, each flare is worse. I had a 3-day IVSM/prednisone taper last Oct. and another one last week. I noticed improvement almost immediately after last week's SM (very weak legs before and could barely walk), so that is good. My hope is to keep walking with my rollator or forearm crutches for as long as possible.

My fear is that with all of this medicine, I am destroying my body in addition to the MS. I guess I go back and forth, like so many of you. Fear that I'm not doing enough, followed by fear that I'm getting way too medicated. Ach!

I hear you on that Mary Ann. That's what I was afraid of doing IVSM every 3 months for 3 days for the last 6 years. My body was starting to rebel against the steroids. So far, I haven't shown any bone density problems from all the steroids, but I am sure it will show up.

I couldn't tolerate Copaxone. I am hoping that I get some relief with whatever I am on right now in this clinical trial.

Man, no kidding. It's a constant battle in my thoughts. Did I do this to myself somehow?? Did the chemicals do it? What about the combinations of all my meds? Has anyone even studied the combinations? Ugh, it seriously drives me buggy sometimes.

By the way, welcome, Azcoyote, I didn't even know that you have a name! I will call you MA.:D

Cheryl, I know, it is such a tough decision. Speaking of which, I just had a bone density scan yesterday, and I have osteopenia in both hips. Guess my doctor will be adding yet another medicine to my line-up soon!

I hope your clinical trial goes smoothly and you get relief. I admire you for doing a trial.

Thanks for the welcome AMN. Feel free to call me MA, that's great. I know you from another board, but what can I call you? :winky:

It is so scary trying to make the decision of whether or not to begin or end medicines for this or any disease. I doubt myself on nearly every decision that comes up during the day, and I can actually drive myself and my DH batty with it. Even little things like where to hang up the hummer feeder can have me second guessing myself! Wish I could just hang tough, make a decision, and then move on!

Originally Posted by SallyC http://neurotalk.psychcentral.com/im...s/viewpost.gif
AMEN!!

More and more PwMS are coming to this conclusion, Becca. You are not alone and some Doctors are agreeing.

I don't think a study has been done on this AMN, but I have read conflicting reports from the Medical Profession about when or if to start a DMD.

I think it was the Mayo Clinic that has said A "wait and see" approach to the MS Meds is preferrable. The NMSS has stated "the sooner the better", to get on the approved DMDs.:confused: :confused: :confused:

PwMS are taking the bull by the horns and deciding for themselves, despite the fear within of, "are we doing enough and are we doing the right thing"??

I hope this cleared things up for you...NOT!;)

Thanks! So far so good on the trial! Next shot, May 24th.

;)

No worries, Sal, I'm just as confused as ever. :holysheep:

So....here's my NEW plan.

I'm going to stay on Copaxone for another few weeks (aiming for different injection areas of course) and then, after Memorial Day holiday, will talk to my neurologist about saying goodbye to the meds for a while.

I've been progression free for most of my MS experience (six years). Is that due to the meds? Is it the 'normal' progression of my MS? No one can really say with any certainty.

For that reason, I'm feeling like it's time - for now - to take a pass on disfiguring my body with Copaxone injections. I'm also choosing not to return to interferons and elevated ALT and ASTs. I don't want to harm my liver again.

I'm going to wait. It's just not okay any more for me to endure damage to my body to maybe prevent...damage to my body.

I'm on the verge of choosing to wait until the next drug becomes available. Wait until there's a pill to take. How long is that? 2 years maybe? Wait until I get a little worse, perhaps? Maybe when Shared Solutions experiences a revenue drop they'll pick up the pace a little bit. ;)

I like the sound of that, Becca. I don't give a rip what it does to my appearance (there's no point in worrying in my case), but I am frustrated that it seems like I've only gone downhill this fast since I've been on C. The scariest thing to me is whether it will pick up the pace once/if I'm off it. Then it's another 8 mos. till I reach this level again.

I dunno. I wish they had more concrete evidence or a test that affirms it's doing something. Ugh. This is worse than picking a major, at least then I could change my path in my own power.

I'm not going back to interferons either, it messes me up too much to justify it.

I'd be frustrated, too, AMN.
Isn't it kind of ridiculous to endure chills, body-aches, depression and liver damage on the off chance that the interferons are doing a little bit of good? Heck, maybe even a lot but does it matter? Having a third fewer exacerbations doesn't mean squat without a functioning liver for godsakes.

When it comes to appearances and those copaxone dents - for me, it's as much psychological as it is physical. I may not have had the best body BEFORE all this (and I am 44 afterall [cute, but 44]) but ...I don't like the idea of hastening the ruin of my body... at my own hands. You've said something to that effect in other posts. It's like, I can't deal with the idea that I'm choosing to do this to MYSELF. Somehow it just seems so counter intuitive. Why do I have to hurt myself - alot - to help myself?

Sure there's the long-haul perspective and all that but right now, it's affecting my mental state ....which impacts my optimism, self-esteem, quality of life. Aging is tough enough as it is. LOL

Well, for what it's worth. I get where you're coming from. Me and the old body might just take off on our own a little while, sans meds. See how it goes. If by chance I need to skeddadle back onto a DMD, I'll do it. But I promise not to KICK myself for making the decision to take a little risk and give myself a break. If you do the same, remember to be kind to yourself for making whatever choice you end up making. There are no sure answers with this disease and therefore, never, any 'I told you so's. Not even when we're talking to ourselves (which I do alot ;)).


becca44

Amen to that Becca! It sounds like you have a good plan. I hope you have a good break and with no or few new symptoms or lesions.

I'll be starting on Tysabri soon, maybe as early as next week... I'm actually looking forward to it, after getting to this point while very stubbornly digging my heels into the dirt. It feels like my body has dragged me in this direction...

If I were feeling well, and having no signs of progression, I'd likely do exactly the same thing you are. Keep us posted, and take good care of yourself! :hug:

BTW, I have some telltale Copaxone dents left on my arms, legs and tummy. They have rounded out a bit (Thank you Frito Lay!), but they're still there.

Wiz

So, Wiz, how long have you been shots-free? I remember that you bailed on the Tovaxin thing for the Ty, right? Hadn't you been on Beta for awhile?

Good luck Becca and Cindi on your "just say no to drugs" campagn. Except for LDN and my AD, I've been drug free now for over 5 years.

I haven't had any disease progression or major exacerbations in that time, so mine is a success story...so far.:)

You may consider adding some LDN, just for grins.:D

Thanks for the cheers, Sally. :)

Hi Sally!

Please forgive my veg-ness, my little brain has very little focus. :o I jumped in here without answering your original question.

I'm glad that LDN is keeping you from progressing! :hug:

Anyway, I am pi$$$ed about the DMD situation. In spring 2003, I started taking Avonex in a clinical trial that lasted 18 months. I had one flareup on that, and my depression officially started at a low level. I felt sick every weekend too. I had a horrible reaction to my first very high dose IVSM treatment.

After the trial ended, I went on Rebif, figuring stronger would be better for me, and the side effects of flu like symptoms wouldn't be as bad. Well, I was on it for five months, and developed severe depression and anxiety. I stopped it shortly after my Dad passed away, in February 2005. I had another bad flare up that spring, more steroids and another horrible time with those. While recovering from the whole mess, I fell and broke my left foot. :mad:

I started on Copaxone immediately then. I had another flare up soon after I started, but I did ok, but still had periodic flares. My last one was last fall, and I had significant weakness in my right arm, hand and shoulder. But then again, maybe the back problems would be considered another flare...

On Copaxone my anxiety worsened as did my pain and spasticity. I started on higher AD's and Baclofen.

In November 2006, my neuro offered me a clinical trial for Tovaxin, and I had high hopes for it. I stopped the Copaxone, for two months before they could draw my blood to test for the trial.

Not only did I not have enough MRTC's to make the vaccine, but there was a big concern over my low WBC counts. Lots of fussing about that and retrieving past medical records from all over the place.

So, since I couldn't be on Tovaxin, here I am on no meds. My fatigue has been getting worse, and my anxiety. I have severe back and shoulder spasms, as well as spasticity all over.

I'm trying desperately to finish my stupid Bachelor's degree in business. But the pain is so bad when I sit I had to drop my last class... :mad: I have five classes to go, but I'm going to have to work at a snail's pace to finish.

I was recently waiting to go into another new clinical trial for a new oral med called CDP323 which is supposed to be like a pill version of Tysabri. It's only going to be a small phase II trial though.

Last week I saw my neuro and told him to count me out for that because I feel like carp. I want Tysabri and I want it now. And luckily for me, it was easy for me to get, and I should start next week sometime I think.

If I get PML, I guess the doctor can say "I told you so". :wink:

So there you have it, the whole story... I just feel thankful that I can still work, but I have a job where I can pace myself and hope it lasts long enough until I have enough saved to retire or go on SSDI if necessary.

I haven't had any exacerbations since starting
Tysabri 7 months ago! :)

I had previously used Copaxone, Avonex & Rebif.

Hi Vlys.:) Longtime no see. Have you had any improvements with Tysabri? No exacerbations is a deffinate improvement, but was just wondering if there is any improvement in your MS sx.

Come back and talk to us some more. I miss you.

:hug:

Thanks Wiz, for telling us your story.

It seems that a lot of us have been disappointed in the ABCRs and a few of us are satisfied with them. That, to me, shows that the 35% success ratio is right on target.:p

Good luck with the Tysabri. I think it has a better track record for keeping exacerbations at bay. Vlys just reported...no exacerbaions in 7 months, on Tysabri...woooooohoooooo.:)

Keep us posted, Wiz.

Hi Vlys,

Your med history sounds a bit like mine. I hope I'll do ok with Tysabri too. :)

I will Sally. If I get a result like that with no daily shots I'll be happy! :)

Sally,
Honestly I forgot all about this forum!

I haven't had any relapses since I started
Tysabri.
Not a real lot of improvement in
walking but it could be loss muscle strength due
to being less active.
Spasticity is still there & the fatigue.

Tysabri is doing what it's meant to do= less exacerbations!
That I'm greatful for. :winky:

A lot of food for thought here. I have been on Avonex since 01. I have only
had a few major flares, but feel really crummy most of the time. I take the
injection Sunday and have fever and chills, aches and spasms thru Thurs.
Friday, Sat and Sun are usually more bearable. Doc says it will get better.
(in my lifetime?) Meanwhile every infection or allergic reaction seems to be
a major setback.

And as I mentioned before, my doc doesn't deal with the day to day stuff.
Threatens (my choice of words) steroids when I complain. That tends to shut me up as I had pretty miserable experience with those and still am suffering the aftereffects with my teeth and bones.

when you feel bad most of the time you forget what good is?:mad:Or can't I tell worse? I am thinking that I am settling for too little, but am afraid of change lest things do get worse still. I am barely keeping my head above water now.

I am amazed that so many of you are also disillusioned with the current
choices, thought I was just being cranky. Enuf rant. I need to make calls
on Monday. If I can manage the phone then.

That's pretty much it, in a nutshell, Kami. It's so frustrating.

What worries me is that as long as big pharma can keep us fat and happy on these drugs, they'll never come up with a cure.:mad:

Oh Sally:D

Fat maybe, but not too happy from the responses!:o