If I have PPMS

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If I have PPMS

Postby Just_Me » Sat Nov 21, 2009 10:22 pm

Which of the CRAB drugs is supposed to be best? The doctor said I have progressive MS & told me Rebif or Copaxone would be right for me but I can't find any info online about which drugs are for PPMS.
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Postby sou » Sun Nov 22, 2009 5:58 am

Hi.

In my opinion, all of them are equally (in)effective. None of them is indicated for PPMS. Not that they do any better in other MS types...

If I were you, I would take no CRABS and would have a look at diet, supplements, maybe LDN and treating the underlying venous insufficiency. Have a look at the Chronic Cerebrospinal Venous Insufficiency thread.

I am not a doctor. Not even close to being one. This is not medical advice, but food for thought. You should always discuss with your doctor about his opinion on treatment options.

HTH,

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Frank » Mon Nov 23, 2009 4:09 am

Neither Interferon nor Copaxone is approved for PPMS. The trials on them, that were done show very few to no impact on the course of PPMS.

Maybe you would also like to have a closer look at the antibiotics regime for MS.
You may also think about adding Vitamin D and EGCG to your supplement regime.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Algis » Mon Nov 23, 2009 4:48 am

Only SPMS experience: it will only makes you sick, more than without. Consider LDN; not a cure; but it made marvels to me; it is cheap; and it could help prevent other ailments too; with no side effects (for me).

Best of wishes; be well!

Algis
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Postby whyRwehere » Mon Nov 23, 2009 4:55 am

From my husband's experiences, I would agree with all of the above.
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Re: If I have PPMS

Postby euphoniaa » Mon Nov 23, 2009 5:39 am

Just_Me wrote:Which of the CRAB drugs is supposed to be best? The doctor said I have progressive MS & told me Rebif or Copaxone would be right for me but I can't find any info online about which drugs are for PPMS.


Sorry about your dx, JM. I just wanted to make sure you (or any other newcomers to MS) understand the terminology, and know that there's a difference between "progressive" MS in general, and Primary Progressive MS (PPMS), which has no one real treatment. Although these are NOT definite divisions anyway - and different docs will evaluate the stages differently - Secondary Progressive MS (SPMS) is considered just a progression from the usual RRMS (Relapsing/Remitting) once it stops relapsing. They still throw the usual drugs at SPMS anyway, just in case, which is why it sounds like your doc thinks you have SPMS rather than PPMS.

With apologies to those who are already completely familiar with MS terminology, but with a nod to the fact there are many newcomers on the site these days, "CRAB" drugs are not a specific type of drug.

C-R-A & B are the first initials of the most common drugs for RR/MS:

Copaxone - glatiramer acetate
Rebif - interferon beta 1a
Avonex - interferon beta 1a
Betaseron - interferon beta 1b


The other new additional choice is Tysabri, a monoclonal antibody. All have their own separate forum sections for those who want to read more personal experiences with them. There is no such thing as a "best" MS med. Like my neuro said, "Pick a drug, it doesn't matter which one."
I find the whole thing absurd in that none of the meds are all that effective anyway, especially after you've had MS for as many years as I have. And they have no idea which one will be best for the individual patient. Patients are told to try one and if it doesn't "work" then try another. Sheesh.

PPMS is not understood well, and may even be a different disease. (Of course I've never considered MS a "disease" in the usual sense anyway.) If your doc is convinced you are really PPMS (Primary Progressive), neither C nor R is a good choice for you.

You might also check out this site - the general info has always been great, although it hasn't been updated recently to reflect the latest meds.
http://www.mult-sclerosis.org/mstreatments.html

For the 6 years since my dx, my neuro reports deem me officially as an RRMS patient who exhibits neither relapsing nor remitting, has no active lesions, and no exacerbations. That's actually a description of SPMS, but if they say that, insurance might not pay for CRAB & T meds. She says she won't call it SPMS because I'm not sick enough. As long as I'm doing better on "nothing" (except diet & exercise) than most people who are on "something" I plan to continue. :)

Good health, good decisions, good treatments to all.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Just_Me » Mon Nov 23, 2009 9:40 am

URgh I guess its too much to ask for my life to be easier and somebody to come up with ONE solution! :roll:

I'm calling my doctor to get it clarified & talk about other options. I hope he has email if not I"m going to type it all up and fax it to him.

My history - I've never had any "attack" unless you count 6 yrs ago when I had slight numbness in patches that moved every so often to a different hand or cheek or whereever. That lasted a few months then went away & nothing more until a few years ago when my knee started hurting. That eventually turned into a weak leg and then my arm started getting weak. Its just gotten progressively worse without anything I'd call an attack or relapse. I have gotten worse since the beginning of summer but its gradual. Some days I am a bit stronger & some not, but no huge differences. 16mo ago I had a clear MRI, now I have about 5 lesions.

Which do I have & which of the CRAB drugs supposed to be prescribed for thatt?
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Postby Frank » Mon Nov 23, 2009 10:17 am

Your disease couse may be called PPMS with some inflamatory (the lesions) activity. Therefor (to calm down inflamation) a CRAB solution might be taken into consideration.
BUT while there is some data (acutally pretty much similar data for all the CRAB) that any them have an influence on some markers of MS including lesioncount, biomarkers like cytokine profiles etc. studies do not support the assertion that CRABs have the potential to ameliorate the disability burden in PPMS (like EDSS progression).

To make things even more complicated for you, it will not be easy to find a neuro, who is open minded when it comes to alternative treatments like ABX, LDN or maybe even CCSVI.
Most will just say "while all this might be interesting, scientific evidence is not sufficient for any of these alternative options, so I can not recommend/precribe any of those".
And while this is basicly correct, its also true that the alteratives offer anectodal and some scientificly justified hope which the CRABs cant.
So it might be worth to consider to give the alternatives a try, say take LDN, ABX, EGCG, Vit D etc. for half a year and see how things are going and if it turns out to be not satisfying, you could still switch to any of the CRABs.
But personally I would find the prospect the CRABs can offer too gloomy to be my fist choice.

So imo. the most important thing for you would now be to educate yourself to be able to have a conversation at eye level with your neuro to evaluate the best option for YOU, and for you to finally make a really informed decision you can identify with.

All the best
--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby euphoniaa » Mon Nov 23, 2009 10:43 am

Explanation of the different versions of MS from the NMSS web site:
http://www.nationalmssociety.org/about- ... index.aspx

If you click on the NMSS site, each of these sections has a link of its own with more details, including videos. Keep in mind that there are NO undisputed "Facts About MS" in the first place, and another site might explain it differently. Sorry.

See NMSS info below:
************************
The Four Courses of MS
People with MS can typically experience one of four disease courses, each of which might be mild, moderate, or severe.

Relapsing-Remitting MS
People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.

Primary-Progressive MS
This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. Approximately 10% of people are diagnosed with primary-progressive MS.

Secondary-Progressive MS
Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition.

Progressive-Relapsing MS
In this relatively rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.

Since no two people have exactly the same experience of MS, the disease course may look very different from one person to another. And, it may not always be clear to the physician—at least right away—which course a person is experiencing.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby LoveActually » Mon Nov 23, 2009 1:52 pm

JM,

I had mentioned CCSVI to McNulty and to my surprise, he had never heard about it. I thought since it was a teaching hospital that surely they would've gotten word somehow. I plan on bringing in some paperwork on it in February when I see Dr. Giang. Worse case scenario, I'll have to get a referral to the proper Doc to see what's happening with my jugulars. But that treatment is definitely an option in my eyes.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby Just_Me » Mon Nov 23, 2009 3:25 pm

Thank you, everybody for all the info. Its very nice to know there are people willing to take the time to help. =)

LA - No email for McNulty so I sent him a fax. Among other things & asked was what he thinks of LDN or antiboiotics as a treetment. I'll let you know what he says. I didn't ask about CCVSI because I haven't looked at anything about it yet.
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Postby Just_Me » Mon Nov 23, 2009 6:22 pm

Frank wrote:...So it might be worth to consider to give the alternatives a try, say take LDN, ABX, EGCG, Vit D etc. for half a year and see how things are going and if it turns out to be not satisfying, you could still switch to any of the CRABs.
But personally I would find the prospect the CRABs can offer too gloomy to be my fist choice....

I don't like the dismal 30% improvement the CRAB drugs offer but I am a little afraid of waiting 6mo to start. I can tell a definate difference in strength over the past 5-6mo, so if I wait & it continues to worsen its that much worse I will get.

I looked it up, and LDN can be taken with Copax. Does anybody know about EGCG & Vitamin D? (And Zinc as well?) I doubt a doctor would prescribe abx with Copax or I'd try it.
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Postby euphoniaa » Mon Nov 23, 2009 8:27 pm

Just_Me wrote:I don't like the dismal 30% improvement the CRAB drugs offer but I am a little afraid of waiting 6mo to start.


I hate to tell you, JM, but none of the MS meds promise any kind of "improvement" whatsoever. In fact, the side effects are likely to make someone feel worse, even when they "work." The "30%" that's usually mentioned (give or take a few percents), refers to the fact that trials have shown that there was an average 30% or so reduction in the overall relapse rates, etc., of those in the trials. They have since learned how to keep re-doing studies against one another to make one sound more effective than another in other ways also.

Spinning the results as an average means that some did better, some did worse, but when they counted total relapses at the end of the study there were about 30% fewer with the drug groups than in the placebo groups. I think other trials showed slight slowing of disability progression also. These are all subjective opinions, however, and could differ from doc to doc.

It's not that they're worthless, but to me, considering the cost and potentially serious side effects, I'd like a more definite benefit profile before I'd consider them myself. But...I'm obviously SPMS after all this time and they're unlikely to do anything for me anyway. The trials do prove they benefit somebody. If my MS was super active and relapsing, I might try one. :) But not for PPMS.

I'm sorry to bring such disheartening news, but I'm astounded how few docs ever truly explain these drugs to their patients. Please talk to your neuro soon and have him explain WHY he chose the meds he did and what you should expect from them. My best suggestion is to keep your body as generally healthy as you can (diet/exercise/sleep, etc.) while you're reviewing your options. That's what's been "working" for me. :)

Best of luck to you.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Frank » Tue Nov 24, 2009 3:10 am

Just to stress again what euphoniaa said:

The CRABs reduce the relapse rate in RRMS bei about 30% and some studie indicate that the CRABs show a positive trend (not that significant) in disability progression - but again in RRMS!

This article might be interesting for you:
Pubmed - Interferon beta for primary progressive multiple sclerosis
Based on this review, the included studies showed that ss-interferon treatment was not associated with reduced disability progression in PPMS patients.

This article also mentiones that, secondary markers, like lesions in MRI where improved by Inf-b in PPMS, but imo. disability progression is the outstanding marker that treatment should be about. I dont care that much about the way my MRI-pictures looks, but the question whether/how well I will be able to walk is crucial.

--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby Just_Me » Tue Nov 24, 2009 7:26 am

euphoniaa wrote:
Just_Me wrote:I don't like the dismal 30% improvement the CRAB drugs offer but I am a little afraid of waiting 6mo to start.


I hate to tell you, JM, but none of the MS meds promise any kind of "improvement" whatsoever. In fact, the side effects are likely to make someone feel worse, even when they "work." The "30%" that's usually mentioned (give or take a few percents), refers to the fact that trials have shown that there was an average 30% or so reduction in the overall relapse rates, etc., of those in the trials. They have since learned how to keep re-doing studies against one another to make one sound more effective than another in other ways also.

Hey, sorry, I posted wrong. I did know that the "30%" applies to relapse rate, not improvement. However I still think that is pretty dismal and taking into account the way the numbers can be manipulated, its likely less. :(

It looks like abx makes an actual improvement in symptoms (or am I wrong with that?) but what damage does the high-doses do to the rest of the body? If its going to improve my walking but kill my liver and kidneys am I any better off?
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