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Primary Progressive Multiple Sclerosis
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Primary Progressive Multiple Sclerosis

Hi all,  I pray ya'll are doing well.  I'm still having a rough go of it.  This latest flare has been going on for almost 6 mo.  Actually my doctor told me that since I have PPMS that I wont get better.  The muscle weakness that causes me to be in a wheelchair is permanent.  That really bites the big one.

My question is:  Why will none of the current medications that are given for MS (the injections like Rebif) work for PPMS?  Aren't they supposed to keep you from having relapses, or at least less relapses?  If that's true then why will they not help with progressive MS?  I know this has probably been explained to me before but for the life of me I can't remember.

I would also like to ask for your prayers and well wishes for my DH Rob.  He has just been diagnosed with COPD.  We just knew it was his heart.  He has been very fatigued and having an extremely hard time breathing.  He was immediately put on 9 different medications and 2 inhalers.  This has got me very worried.  My best friends mother recently died from COPD.  When she died she was on oxygen 24/7 and had only a 5% lung capacity.  We are both very scared.  I've read up on it and it's not a pretty disease at all.  I feel so bad for him and I also feel bad for not being able to help him more or wait on him a little bit more.  I thought COPD was usually caused by smoking but he has never smoked a day in his life.  I would appreciate your prayers for him.

I'll be praying,
Carol
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I'm praying for both of you, Carol.

doni
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Sorry to hear about your problems.  I'm no expert, but I believe the reason that interferons (like Rebif) aren't prescribed for PPMS is that they were originally tested to see if they reduced relapses.  This was the primary endpoint in the original trials.  So, they are really only indicated for RRMS, where there are distinct relapses.  From my understanding, in PPMS there are not distinct periods of relapse then recovery, just slow decline.  If you are still experiencing relapses, then maybe you have been mis-labeled as PPMS, and would be indicated for one of the DMDs.  (I always thought these classifications were somewhat arbitrary, anyway).

If not, you may inquire about Copaxone; I believe this was tried for PPMS.  Also, I think there is currently a study looking at the oral drug Fingolimod in PPMS.
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Our precious Carol,

I am so sorry to hear things are going so rough for you and your husband.  I have also wondered why one of the DMD's is not given for PPMS.  If there is any chance AT ALL that they might do the slightest good, I would be on one, no matter what the doctor's opinion is...because in all reality, they really DON'T know.  It would be a chance that I would take.  Of course that is a decision that only you can make and your doctor.

My mother had COPD.  If you would like to know more about the disease, than you really cannot find on line, please feel free to PM me.  I will try to help in any way that I can with some answers you may need.  Not as a professional, but as a daughter that was with my mother through the best (If there can be any GOOD from this disease) and the worst of this disease.  I've seen all the stages.  Let me be there for you as your friend, please.  I have a soft shoulder.

You and your husband have so much going on in your lives right now.  I really have no other way to help, than to include you and Rob in my prayers.  I will also pray for God's mercy upon you.  I pray that you will have more good days than bad, but most of all know that you have friends and God that are standing right beside you, all the way.

Many prayers and much love dear friend,
Heather

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Carol,

I'll tell you, I don't understand that part of the medication either.  They specifically say they have reduced relapses - then WHY not for PP? I am with you on this one.  I'd go on it anyway -what can it hurt.  

What does your DH do for a living Carol? Any thing that could have exposed his lungs to something to cause this.  I'm so very, very sorry about his dx.  COPD can be managed, but it can be bad too.

Not very good news from Drs for you it seems.  This Dr. willing to put you on something anyway? Would you be willing to try gal?

Praying for you and hubby,
Shell
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I'll try a quickie answer here.

First, I'm so sorry to hear your bad news, Carol.  You know our Granny Hotwheels is very dear to our hearts.

The underlying disease process in progressive MS is different from relapsing MS.  What is happening to the nerves is not the same.  The immune system is attacking the nerves in a different way in progressive than it is in relapsing, so the same meds won't have the same effect.

Some researchers actually believe that PPMS is a different disease entirely than then other forms.

There are even differences between PPMS and the Secondary Progressive MS.  So, that is another reason why some meds appear to help in SPMS, but not in PPMS.

Does this at least help?

ALL of the DMDs have been tried in PPMS.  They've all been studied, some in combinations.  They do not work.  Trink is correct that some centers have tried Copaxone in PPMS, but no really great results have been published.  NYU wanted to start Craig on a program, but I don't remember the details.  Maybe Elaine can tell us.

Quix

Quix
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Hi Carol,
  I was very sad to read your post.   You have always been very special to Craig and I.  There was a small study done on men with PPMS and Copaxone.  It showed some improvement but only after six years.  the study (can't remember the name) was stopped after 18 months since the results were not statistically significant.  Then some men continued using the Copaxone and were followed casually.  It showed some help with less disability six years after the study was started.  

  Copaxone did not ever show to help women with PPMS.

  NYU docs told Craig that in their opinion, PPMS acts like a "recalcitrant two year old" and is resistant to treatment.  I guess you could ask for a trial of Tysabri.  That would be the only other med that NYU could think to try on Craig if Copaxone doesn't help.

  I would think you should at least ask for a trial of a drug.

  I am sorry about your husband.  Is there any way that he worked around asbestos??

  If so, there is lots of financial assistance for people with lung disease caused by asbestos exposure.

  Keep in touch please, Carol
  Elaine
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CAROL,

SWEETIE,I'VE MISSED YOU DEARLY AND THINK OF YOU OFTEN.

DON'T GIVE UP!!!!! THERE'S A MED BEING USED OFF LABEL FOR ALL FORMS OF MS---RITOXIN---USED CURRENTLY FOR RHEUMATOID ARTHRITIS(SP).MANY NEURO'S HAVE USED FOR MS AND THE RESULTS HAVE BEEN VERY PROMISSING.---ASK YOUR NEURO.

MY MS HAS PROGRESSED,I HAVE LOST THE BALANCE CORTEX---IT FLAT LINED ON A STAE OF THE ART VNG TESTING.

I TOLD MY MS SPECIALIST THAT REBIF ISN'T WORKING,HE STATED STAY ON IT EVEN THOUGH ITS FOR RRMS,HE STATED AROUND FEB. A NEW FORM OF REBIF WOULD BE AVAILABLE REBIF(R).

I HAD FOLLOWED THIS STUDY A YEAR AGO,THIS MED WAS TO BE AVAILABLE THEN.MY NEURO SAID ALL THE STUDIES SHOWED PROMISING RESULTS WITH REBIF (R) FOR ALL FORMS OF MS.I HAD FORGOTTEN ABOUT THE STUDY UNTIL HE MENTIONED IT.

BACK TO THE RITOXIN,A LOCAL MAN IN A NURSING HOME,WHOM HAS NOT WALKED IN SOME YEARS AND HE'S YOUNGER THEN ME,THEY HAVE STARTED HIM ON IT,CAROL HE'S NOW USING A WALKING,THEY HAD TO DO MANY WEEKS OF INTENSE PT FOR HIS LEG MUSCLES,BUT IT WAS FANTASTIC TO SEE HIM UP AND WALKING.

PLEASE KEEP YOUR LEG MUSCLES STRETCHED,RUBBER BAND THERAPY,THERE'S MANY LEG STRENGTHENING EXERCISES THAT CAN BE DONE SITTING OR LAYING DOWN.

MY HEART BRAKES FOR YOUR HUBBY,YOU BOTH ARE DEALING WITH A LOT.REMEMBER YOUR BOTH IN MY PRAYERS AND THOUGHTS DAILY.

THANKS FOR UPDATING US,WE MISS YOU.

HUGS

T-LYNN

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My thoughts and prayers are with both of you and your family members that have to watch and feel totally helpless.
May God be with all of you.

Suzie
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I'm so sorry to hear that you're having so much trouble and also that your husband is also suffering.

I don't understand how you can have PPMS (primary progressive) and also have relapses because by definition PPMS has no relapses. As far as I understand it, you can have SPMS (secondary progressive) with superimposed relapses or you could have PRMS (progressive relapsing). On the other hand, I don't understand these things too well as I don't even know what kind of MS I have. I think patientx is right that the categories are a little arbitrary and the first time I saw my neuro, he did say that not everyone fits neatly into those little boxes.

If you do have PPMS, then you could check out the clinical trial for FTY720 (fingolimod) at http://clinicaltrials.gov/ct2/show/NCT00731692.

I think, like people said, that the conventional wisdom is that the current meds work against the inflammation that is associated with acute relapses and that it is hoped that reducing the number/severity of relapses will at least slow the progression of the underlying disease.

For a while I thought I had PPMS and read a lot on it. Some people do seem to think PPMS is possibly an entirely different disease than RRMS/SPMS. On the other hand, I've been reading some things on the natural history of MS recently which argue that PPMS is the same as SPMS just with the relapsing-remitting phase cut off so maybe that's why it tends to start later in life. They argue that the rate of progression from the start of the progressive phase is similar and also that once someone reaches an EDSS (Expanded Disability Status Scale) level of 4, progression occurs at a fairly similar rate no matter what the progression was before that.

It does seem like it is generally thought that there is some other mechanism in MS that causes neurodegeneration other than the acute inflammation of attacks and the accumulated damage from that and that we need drugs for that.

It is also conventional wisdom that the current meds don't help progressive MS. There were a couple studies on Betaseron for SPMS, one in Europe and one in North America. The first showed some benefit and the second didn't. This has been interpreted as being due to differences in the patient population with more in the European group having superimposed relapses on which the drug could have an effect. There was also the Copaxone study that Elaine mentioned that showed a small benefit for men with PPMS.

On the other hand, I recently read something on PPMS where a doctor argued that in fact it is not legitimate to conclude from the existing studies that the current meds won't work in PPMS. You can't say that they do work, either, but he argues that the studies are less conclusive than they are made out to be. The presentation is called "Current and Emerging Therapies for the Treatment of Progressive Disease" by Steven R. Schwid and it's at http://cme.medscape.com/viewarticle/580183 (I think you might have to get an account to see this. I got one a while ago and don't remember the details, but it didn't cost any money).

Anyway, I don't really know what I'm talking about so you should take everything I said with some grains of salt, but it does seem to be difficult to draw any definitive conclusions about just about everything to do with MS.

Wishing you and your husband both improving health this year and into the future.

sho
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