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Primary /Secondary Progressive MS For those living with Progressive MS to discuss treatment options and lifestyle issues.

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  #1  
Old 05-30-2011, 02:07 PM
whatismyname whatismyname is offline
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Copaxone for PPMS

my neuro wants me to start taking C. i have my doubts to its effectiveness for fighting ppms. i would like to hear from people who are on or have been on C. i did a search and found some info on the subject, but am hoping for some new input.

i am VERY hesitant to start taking C, b/c of the side effects, injections (scared of needles), and limited proof that it will do any good. if it has done good for you, i would love to hear about it. i currently take ldn and ampyra. i dont really notice their effectiveness. maybe the ampyra helps a little bit in being able to get around my house with a cane, but not much. the ldn i dont think i notice anything. i have been taking it nightly for 5 years. if i go a week w/o taking ldn, i notice no difference.

thank you for your input...
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  #2  
Old 05-30-2011, 07:13 PM
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twisterred twisterred is offline
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Well.... as a RRMS person, the needles aren't bad. I'm a wimp and injecting manually is what works for me.

The side effects do take some time... months really. The reaction lessen very slowly, but it does get better.

Best wishes regarding this. Please remember you are in charge and make the ultimate decision.
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  #3  
Old 06-03-2011, 05:22 PM
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Des Des is offline
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You might ask this on the medication message board. I know what you mean about wondering about its effectiveness.

Twisterred is right about it being your decision, too, and that the needles aren't that bad. They are very short and thin, go right under the skin, and you can use an auto-ject (or whatever it's called), so you just have to press a button, I think).
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  #4  
Old 06-03-2011, 09:30 PM
coral12 coral12 is offline
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Copaxone

I have secondary progressive. I started copaxone last June after being on chemo for two years. The shots are ok, I use the auto inject . My disease has not gotten worse since I started taking it, I take it as meaning it us helping .

Also take amp rya . That has helped my gait and my back does not ger as tight as it once did. I started that in august .

Copaxone is much better for me than betaseron. But it is your decision. Do what you thibk is the best for you.
Coral12
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  #5  
Old 06-04-2011, 10:01 AM
SANDRAB SANDRAB is offline
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secondary progressive and copaxone?

I have PPrms- Primary Progressive Relapsing MS. I started on Tysabri last month. I really like it. No needles everyday or every other day. Just once a month. Hooray!
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  #6  
Old 06-05-2011, 05:11 PM
gregster68 gregster68 is offline
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I've been on Copaxone, for about three years. I have PPMS. I actually asked, well told my neuro that I wanted to start some form of treatment. He had mentioned Copaxone on a prior visit, so he agreed.

To be honest, I don't think it's helping. I haven't had any relapses Per Se, but with PPMS relapses aren't really an issue. I do think my MS is getting worse though

I am seeing a new neuro on Wednesday, we'll see what he say's. My insurance sends me my medicine in three month bundles and I am getting a new shipment on Tuesday.

As for the needles, I am so used to them that it hardly bothers me. As long as you rotate your sites, you should be fine. My wife actually does my arm shots, as they are hard to reach. The autoject device really makes giving the shot idiot proof. In all the years I have taken it, I have only had a few site reactions.
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  #7  
Old 06-06-2011, 10:43 AM
sniper762 sniper762 is offline
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for all those interested, this is my progression

13 DECEMBER 2005


I was first diagnosed with MS in August of 2002. My first symptoms were constant dizziness and difficulty maintain my balance while walking on uneven ground, such as encountered while walking through the woods during hunting. I was tested for possible inner ear problems and tested to see if my vision and inner ear were in sync with one another. Then I would experience temporary paralysis of my left leg when I would run (2 mile run every other day for pt at work). I would even get unusually fatigued faster when doing my pushups and sit-ups finally, the doctor did an MRI and a spinal tap that confirmed my ms diagnosis. At first the doctor said that it was probably RRMS but me not having any relapses, it was determined to be PPMS. Well, after a lot of doctorís visits and many tests, I was finally medically discharged (Itís mandatory upon a neurological disease diagnosis) from the military on 20 December 2003. I was discharged with a medical discharge (60% temporarily disabled) from the Army. I was to receive about $1500.00 month with the federal tax withheld. VA was paying part of that and the Army part. I was told that I could also draw Social Security disability, but I would have to wait 6 months after discharge before I could start drawing it.

This made things quite financially tough. Between the $1600.00 per month non.-taxable from SS and the Army retirement, my income would be about the same as when I was working. Then in May of 2004, I had applied for VAís non-employability benefits in which I would receive the same as if I were 100% disabled. I was awarded that in November of 2004 and began getting $2500.00 per month non-taxable from them. So now I get about $1000.00 per month more than when I was working. GREAT!

25 OCTOBER 2007

I finally got everything finished In Dec 2006 with VA on the van. They paid $30,000.00 of the total $49,000.00 which I financed the remainder with SECU for a variable rate of 5.5% APR and payments of 5 years at $378.00 per month

I donít walk at all now and transferring from my chair is still being done, but difficult. Driving has become too difficult for me so as of a few weeks ago, I have stopped trying to drive. If I need to go anywhere, then I can wheel into the ramp van and Paula can take me

10 SEPTEMBER 2008

Although I am disabled to the point that I canít walk or stand, I find things to do that occupy my time each day. My wife gets me dressed each morning and helps me out of bed and into my wheelchair. From there I go to the living room, where she helps me transfer into the lounge lift chair where I remain all day while sheís at work. Being that I canít get up, I wear Depends disposable diapers. When I have a bowl movement, my wife cleans me up and changes me like a baby. I use a urinal for urination during the day and night. I have the telephone, the television remote, and the Bose radio system remote at my reach so that I may use at my desire. I sometimes listen to the radio, watch television, mostly discovery channel, history channel, military channel, national geographic channel or outdoor channel programs and documentaries that either are showing or I have previously recorded or I also have a CB radio (wild turkey) and a ham radio (KI4JDX) next to me that I sometimes talk on.

VA has given me a Jazzy electric wheel chair and also they have paid $3400 to put ramps to the house and rails on the walls. I am waiting now for them to approve monetary assistance for a handicap van with remote control door, ramp and hydraulic lowering system

24 March 2010

VA has given me another chair, one that reclines and has leg reclining extensions. They paid half of the cost of a$50k ramp van in 2008 and every two years they replace it with a new one for no additional cost. They just replaced it with a 2010 Toyota Seneca. I donít drive now, but my wife carries me wherever I need to go. I applied, last year for a $60K Special Housing Adaptability grant which was approved this year.
They began, in January, after getting the contractorís estimates, permits and inspections, building a 12 x 12 additional handicap accessible bathroom, with barrier free shower, adding a new air conditioner to accommodate it, extending the deck to the room, putting a roof over it with lights and fans and paving the drive to accommodate me taking my wheel chair to check the mail. They are almost through.


5 MAY 2010

I submitted this story to the National MS Society.

A writer, I am not. Nevertheless, I would like to share my story with the many who have found themselves under the influence of this dreadful disease.

I begin by saying that I consider none to have been any more active than myself. I spent 18 years in the US Army (of which I was mandatorily discharged in 2003 at age 46 due to my then recent diagnosis of ms), was an avid hunter, shooter, fisherman, trapper, hiker, runner, ball player, bowler and gardener among participating in many other interests and hobbies requiring the utmost of activity.

At first it was thought that my ms with the onset of constant dizziness, sudden temporary paralysis in my leg weaknesses and fatigue might be RRMS. Since I never had any relapses, just a constant debilitation, the doctors labeled it to be PPMS. I went from originally walking with a cane to needing a walker to a wheelchair. I now am bedridden. I canít sit up or get out of the bed on my own, my arms and hands have limited use.

My wife and I have raised three sons (all grown now) and my youngest has witnessed the rapid advancement of my debility. I used several of the therapeutic drugs for several years with no positive effects (Avonex for 1 Ĺ years and then Copaxone for 2 years). Although statistics show that these drugs have no effect on PPMS, my doctor wants to give them a try anyways, hoping that I may be an exception to the rule and receive positive benefits (At about $1500 a month cost, itís probably just their contribution to the drug industry). Thankfully, I have no current pain. Although I am aware of the usually accompanied depression associated with the disease, I have not experienced it. I remain mentally upbeat and keep a positive outlook. I occupy my time by watching TV, listening to music, talking all over the world on ham radio, reading and surfing the internet. I take pride in my past accomplishments, cherish my memories and love to share them with others.

The VA and SS disability compensation are financially sufficient and I have taken full advantage of the grants and the services that the VA offers. I am thankful for the ms society's many services such as the magazine and the online chat rooms and info available to keep me informed. Although, I seem to be in a very small percentage (10%), of the ms group, I try to keep company with them. I have heard of those with ms that are completely paralyzed from the neck down. It is my wish that that those affected minimally by ms, are not intimidated by my condition, yet understand that ms effects differently to different individuals.

I have a Facebook account (Murphy Riggan) and my email address is driggan3@nc.rr.com and I welcome any visitors.

6 JUNE 2011
Around the beginning of the year I started using an external catheter at night. I would have muscle spasms and spill my urinal in the bed sometimes when I used it. I can still manage the urinal during the day though. I have difficulty turning over in bed, something I must do often to avoid pain in my legs and arms due to lying in the same motionless position. I manage to turn over with the aid of the attached bed rail but I sometimes need help uncrossing my legs. I have to keep my feet out from under the cover for they stay hot all the time. When I get hot, from hot bath water, summer temperatures or fever from the onset of a flu bug or virus my ms is exaggerated and I become very weak, sometimes to the point of not being able to even move my arms, hold my head up or even speak clearly. This makes it difficult for my wife to handle me (dead weight) and sometime I am transferred to the VA Hospital via ambulance. I have been there several times in the past few years with diagnosises of urinary tract infection or dehydration (my bad; I donít drink adequately).
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  #8  
Old 06-24-2011, 09:23 PM
kmjns2 kmjns2 is offline
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I have SPMS and have been on copaxone since I was diagnosed. I tried the chemo but it damaged my heart & had to quit. It works miracles for most but did nothing for me. So back to copaxone....I chose it because it did not have the side effects others have like the severe flu like symptoms. At the time I was a single mom and ran a daycare center working 7 days a week between 12-18 hours a day. I was terrified of needles...HATED them. The nurse came to my house to teach me how to use it with the auto injector and it was quite funny. I sat with the injector on my thigh & tried to push the button for 5 mins but was too scared. I finally did it and was amazed...it didnt hurt at all. When I shoot in my arms sometimes it hurts for about 5 mins. The only side effect is a red patch where you inject, which goes away. Now does it work??? I dont know how you would tell other than the number of new lesions on your yearly MRI's. Dont be scared of the needle.
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  #9  
Old 06-29-2011, 05:08 AM
sich59 sich59 is offline
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I have PPMS and have taken both Betaseron and Copaxone for a period of time. In my opinion they were a waste of time and money. They didn't help me at all and I was glad to stop taking them.
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  #10  
Old 06-29-2011, 11:10 AM
EdinAZ EdinAZ is offline
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I am ppms. When first dx'd I started taking Rebif. After 7 months I quit because I feel it was making me worse.

Ed
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  #11  
Old 06-29-2011, 01:16 PM
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Windwalker Windwalker is online now
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What a terribly difficult decision this is...

My opinion is that these DMD's do nothing for PPMS. I have PPMS and tried Avonex...what a horrible experience that was.

It is clearly stated on the box and in the detailed literature that they HAVE NOT been proven effective for PPMS.
What discouraged me the most is that it clearly states that they have no idea why it supposedly works...just that it barely outperforms a placebo...and this is for a much more treatable condition...RRMS.

These are my opinions and thoughts...I do not mean to discourage any attempt to fight the disease. The fact is we are desperate and desperation makes us do things that we may not otherwise think smart or prudent.

Me...I feel bad enough without taking an unproven Med. that will make me feel much worse. Power of mind and spirit...healthy lifestyle...there is great healing power in this. At the end of the day you must do what your soul compels you to...don't let fear of any kind make the decision for you.
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  #12  
Old 07-07-2011, 10:50 PM
Nenebird Nenebird is offline
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I was dx'd in 3/08 with PPMS. I did Chem/Mitazantrone in Jan 09 for three treatments and then began Copaxone in May 09..I do my injections in my hips and thighs mainly. Have one site injection reaction, but otherwise doing okay. Hurts too much in my arms..Dr. said it was okay to shoot in a more padded area. I take Minocycline, LDN and Vitamin D plus other supplements. I think its worth it. I have had some minor progression but still mobile for the most part.
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  #13  
Old 07-09-2011, 10:10 PM
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Kimba22 Kimba22 is online now
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Nenebird,

Glad to hear you are still doing OK. They still just don't know enough about the DMDs and whether or not certain ones will work for you or your type of MS. Although nothing has been FDA approved yet for PPMS, there are some clinical trials using Gilenya for PPMS going on right now. And yes, Copaxone is sometimes used for more than RRMS. My MS Specialist is a proponent of Copaxone.

Encouraging that you shared you are still doing well. Each person is different, along with how quick the disease can progress or the amount of disability that can accumulate in each form. This is just such a uniqely individualized disease. And some people can plateau for years.

Yes, padding helps when injecting Copaxone. I fear the disease worse than the needles, although I passed out the very first time I did a shot - Avonex then (lol). Talk about a wimp ... no problems now, you get used to it and your skin toughens up (or maybe mentally you finally do), so you barely feel them. Besides the welts, and doing it every day ... I liked Copaxone the best of all the CRABs because of it's lack of side effects.

-----------------------

sniper762,

First, let me thank you for your years of service to the army. And, thank you for sharing your story with the NMSS in an effort to help others. I'm sorry to learn the advancement of your course of MS, but you sound like a very positive & content person ... despite your condition from this awful illness. I know someone who is bedridden, too, but suffers depression, too. Be careful about those UTIs, she has a bad one right now that gave her a blood infection! Have you ever tried the cranberry supplements, they have helped me.

I'm glad the VA has been there for you. Your wife sounds like a rare gem, too. I am interested in how you applied for the Special Housing Disability Grant, though. Is there a website for that?

I do have a girlfriend who was dx with RRMS 20 years ago (while in the Army) ~ after a very bad relapse that left her paralyzed, which she completely recovered from within a few months ~ who is STILL in the army (and yes, they know about it/ she takes Avonex & sees a neuro her military insurance covers), but her disease course is mild and she's always passed her physicals and can still do her job as if she had no MS.

-------------------------

Best wishes to you all ...
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  #14  
Old 07-10-2011, 09:17 AM
sniper762 sniper762 is offline
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kimba22, http://www.benefits.va.gov/homeloans/sah.asp
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  #15  
Old 07-10-2011, 09:21 AM
sniper762 sniper762 is offline
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kimba22, go to the va wesite, click on va benefits and then special adaptance for housing (SAH)
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