Post Angio- Do U need ImmuneEnhancement or Immunomodulation?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Post Angio- Do U need ImmuneEnhancement or Immunomodulation?

Postby MegansMom » Wed Sep 01, 2010 10:57 am

Please forgive me as I am new to MS but I have been reading MS info from the Internet daily x the last few weeks few weeks and I am an RN for close to 40 years ( Yikes!) I need to know if I am thinking correctly....

My 35 yr old daughter is the patient and she is and always will be my precious girl ( I am sure all you parents all nodding). She was dx with CIS 2 weeks ago, she has 2 lesions and her symptoms have all abated(for now)Her symptoms started in June 2010.

Anyway I have reached some conclusions and we are moving forward. She will be tested for CCSVI within the next 2 weeks and I am convinced she will need angioplasty ( as she has classical CCSVI symptoms)

My problem is understanding the whole medication Tx. Since they all were designed around suppressing or depressing or altering the immune system ......it seems to me that they would be the opposite of what we want post-angioplasty-- that is a healthy immune system with all of its "clean-up crew"

I am basing this on Avonex which depresses Macrophages ( WBCs which eat up old debris) and the 2 new oral Drugs Clabribine and Fingolimod- both that suppress some WBCs (albeit selectively) by 2 differing methods.

Now if you believe that that your immune system is attacking the myelin this would support these kind of drugs but if you believe CCSVI is the cause then the belief that the immune cells (WBCs and other parts of various types) are in the brain trying to get rid of inflammation, cell debris , iron and other solutes. This is the opposite of the desire of the Immune cause theory!

If these drugs alter immune function than after the angioplasty when venous flow is repaired the immune system would need all the help it can get to remove wastes, cell debris , enhance cell repair and do all the things it normally does and this does NOT include any drug that would hinder a normal immune system.

Does anyone have a good handle on Rx after Liberation procedure? Or is this all to be played out in the future? I am tempted to have her get the angioplasty( if indeed she has the blockage) and then take nothing since she is not on anything, then of course , reconsider if she has a recurrance. And of course its all up to her.

Am I totally off base?
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My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby CureIous » Wed Sep 01, 2010 11:36 am

It's all going to be played out, the when is anyone's guess.
Obviously since they can't define what triggers the immune involvement in the first place (but of course we have some pretty good ideas about that here), the fallback position from all the "official" POV's is stay on the drugs, including from Zamboni, because we don't know the how/why or what will happen if we stop the drugs. Nobody on this site that I am aware of has "recommended" (from a layperson's POV) anything other than what you decide between you and your Dr.

That's the heavy disclaimer stuff so that it's not misunderstood at all. There is no wholesale departure from the DMD's, either on this site, or in the CCSVI world in general. "We don't know what we don't know" is the common refrain.

However, I will say this, and I only speak of myself and not in any context of what I think others should do, I don't take the Avonex any more. I stopped (due to other reasons) 3 months prior to ever hearing about CCSVI, but it was strongly recommended by my neuro at the time that I resume immediately, as things were getting so much worse, so fast, and there really was no other option.

I decided (on my own), to give it one year post-op to make a final decision on resuming Avonex, and most certainly should a flare up happen in the interim, that would decide for me. This was against doctor's advice (of course). So far so good, but that's me and my particular instance and not indicative of what anyone should do, or how they may fare under similiar circumstances. My goal, simply put, was to eliminate (in my mind, not being part of an official study), any thought that the gains received from the stenting/angioplasty were due to the DMD course.
My neuro has agreed, based upon what he sees, and how I say I feel, that the discontinuation is fine for right now.
As an early stage RRMS, I have such "luxuries" not afforded to those who are one relapse away from greater disability. If not now then when?

So that's one perspective, and you will find across the spectrum those that have stayed on the DMD's, and those who have not. I'm 13 months post-op now, and wouldn't dream of reinstituting a DMD regime at this point, subject to change at a future date.

Hope that helps.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby joanp » Wed Sep 01, 2010 11:37 am

it's a personal choice of course - but i would go with no MS drugs.
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Postby Cece » Wed Sep 01, 2010 3:03 pm

It's a huge question mark. Even in CCSVI theory, the immune system reacts to the iron deposits or hypoxic dead/dying nerve cells and causes secondary damage beyond what would be simple clean-up. Inflammation in the brain is not good, regardless of cause (ccsvi or autoimmune). However these are powerful drugs. Risk of liver damage, etc. Copaxone may be the mildest of the bunch. These drugs have proven efficacy in the treatment of MS when CCSVI goes untreated, as it has forever. But it is unknown if they have efficacy in cases of MS after CCSVI treatment. Personally I'd suggest taking the drugs. They have proven efficacy, if they're too lousy with side effects she can always come off them, and CCSVI treatment does not often/always work on the first ballooning. She may get treated, restenose within a week, have a wait before the next treatment, and be unprotected in the meantime. That same scenario, if she's on Avonex, she has an extra level of protection there.
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Postby MegansMom » Tue Sep 07, 2010 8:58 am

Cece wrote:It's a huge question mark. Even in CCSVI theory, the immune system reacts to the iron deposits or hypoxic dead/dying nerve cells and causes secondary damage beyond what would be simple clean-up. Inflammation in the brain is not good, regardless of cause (ccsvi or autoimmune). However these are powerful drugs. Risk of liver damage, etc. Copaxone may be the mildest of the bunch. These drugs have proven efficacy in the treatment of MS when CCSVI goes untreated, as it has forever. But it is unknown if they have efficacy in cases of MS after CCSVI treatment. Personally I'd suggest taking the drugs. They have proven efficacy, if they're too lousy with side effects she can always come off them, and CCSVI treatment does not often/always work on the first ballooning. She may get treated, restenose within a week, have a wait before the next treatment, and be unprotected in the meantime. That same scenario, if she's on Avonex, she has an extra level of protection there.


After doing several more days of reading about all of these MS drugs -Immune modulating (including the pending orals)....I can not in all good conscience advise her to take something that I believe will be contraindicated after the angioplasty. After the flow is corrected a healthy robust immune system would be needed for tissue debridement, healing and overall health.

And CeeCee the human immune system is designed to do a great "clean-up" job if the blood is flowing the correct direction and oxygenation is adequate ( both of which are impeded in CCSVI- also coincidentally ALL of the pwMS that these drugs were tested on and most of the pwMS that take them have untreated CCSVI) So all of the data that supports the current drugs is based on people that most likely have undiagnosed CCSVI and thus untreated CCSVI.

I can not in all good conscience encourage her to take Rx that have not been tested on post-angioplasty pwMS.

Her Neurologist is pushing for her to take the new orals and both of them really inhibit the Lymphocytes (Gilenia keeps them from working by keeping the lymphocytes in the lymph nodes, and Cladribine depresses the Lymphocyte production in the marrow) I asked him what if she is exposed to something like an infection where she needs those lymphocytes. His answer was then we take her off of it. I then asked him how long it takes for the Lymphocyte count to be normalized. His answer: about 3 weeks. Now I don't know about you but in most cases of infection, you don't have 3 weeks to wait.

Then he brought up the "dangers" of Angioplasty and its HIGH risks- which is all hogwash. He definitely chose his words to illicit fear.
So now we don't trust him and will be looking for a neurologist that is open minded enough to look into CCSVI.

They need to stop the fear mongering and drug pushing!
Last edited by MegansMom on Wed Sep 08, 2010 2:37 am, edited 1 time in total.
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby CureIous » Tue Sep 07, 2010 9:05 am

MegansMom wrote:

I can not in all good conscience encourage her to take Rx that have not been tested on post-angioplasty pwMS.

Her Neurologist is pushing for her to take the new orals and both of them really inhibit the Lymphocytes (Gilenia keeps them from working by keeping the lymphocytes in the lymph nodes, and Cladribine depresses the Lymphocyte production in the marrow) I asked him what if she is exposed to something like an infection where she needs those lymphocytes. His answer was then we take her off of it. I then asked him how long it takes for the Lymphocyte count to be normalized. His answer: about 3 weeks. Now I don't know about you but in most cases of infection, you don't have 3 weeks to wait.

Then he brought up the "dangers" of Angioplasty and its HIGH risks- which is all hogwash. He definitely chose his words to illicit fear.
So now we don't trust him and will be looking for a neurologist that is open minded enough to look into CCSVI.

They need to stop the fear mongering and drug pushing!


That's interesting his answer to the lymphocytes. Good questions you asked. Glad he was able to adequately warn you about the angioplasty in the nick of time ;) ;)

There's some good ones out there that's for sure, keep looking and you'll find one.

Mark
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Cece » Tue Sep 07, 2010 9:24 am

MegansMom wrote:So all of the data that supports the current drugs is based on people that most likely have undiagnosed CCSVI and thus untreated CCSVI.

I can not in all good conscience encourage her to take Rx that have not been tested on post-angioplasty pwMS.

That is a powerful argument.
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Postby Vivianne766 » Tue Sep 07, 2010 11:01 am

I was on Avonex and then Betaseron for years.
I stopped 6 weeks ago. I don't think I'll ever take them again.
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Postby Donnchadh » Tue Sep 07, 2010 11:17 am

Question to ponder: Has there been ONE documented case of Avonex "curing" a MS patient? Curing being defined as the retreat of existing symptoms.

Not all CCSVI liberated patients report a complete cure; some do, some report no improvements.

But isn't that better then the history of Avonex? How many have died as a result of liver or kidney damage taking Avonex?

Ultimately you have to decide if MS is caused by some unknown agent provoking the autoimmune response or if a vascular venous disorder is the root cause, which initiates the cascade of symptoms called "MS."

Donnchadh
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Got MS?.....Get Liberated!
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Postby CaptBoo » Tue Sep 07, 2010 2:29 pm

From my perspective; 6 months of Copaxone which neither helped or hurt, then 6 months of Avonex which definitely tried to kill me, and after over a year of LDN (energy and attitude better, leg and balance unchanged); after my procedure, I'm going to stay on the LDN.

LDN is described as an immune-modulating drug. Which to me means that it keeps the system working right. I'm going to need for my immune system in tip-top condition to take the all the old garbage out and bring the new groceries in.
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Cure?

Postby jgkarob » Wed Sep 08, 2010 4:35 am

Whatever the cause is, or treatment, no one has ever claimed that Avonex is a cure for MS.
So your point is redundant.
It all depends on how you react to whatever you are taking pre-CCSVI treatment.
If you tolerate Avonex well, then you will most likely continue taking it.
There is no evidence that it causes liver cancer.
In fact, if you know of a case where beta-interferon of any type caused liver cancer, then someone needs to know.
How about posting it?

Having just this week read Ozarkcanoer's heartbreaking post about CCSVI, I'm not as sold on it as I was.


Donnchadh wrote:Question to ponder: Has there been ONE documented case of Avonex "curing" a MS patient? Curing being defined as the retreat of existing symptoms.

Not all CCSVI liberated patients report a complete cure; some do, some report no improvements.

But isn't that better then the history of Avonex? How many have died as a result of liver or kidney damage taking Avonex?

Ultimately you have to decide if MS is caused by some unknown agent provoking the autoimmune response or if a vascular venous disorder is the root cause, which initiates the cascade of symptoms called "MS."

Donnchadh
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Re: Cure?

Postby Cece » Wed Sep 08, 2010 4:49 am

jgkarob wrote:In fact, if you know of a case where beta-interferon of any type caused liver cancer, then someone needs to know.
How about posting it?

If you can find anything in Donnchadh's post about cancer, you've got better eyes than I do....
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Postby jgkarob » Wed Sep 08, 2010 4:56 am

Sorry, misread. Liver damage.
But really, my point about Avonex is that not one person has ever claimed that it's a cure for MS.
All the older drugs do is try to slow relapse rate. When they work.
I don't think they can be proven to slow progression.
But I wouldn't know, I'm not a neurologist, but just a person who has MS.

Like most others with MS, I'll do what I can to delay progression and relapses.
No MS treatment is without risk.
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Postby MegansMom » Wed Sep 08, 2010 4:57 am

After reading a few more days...and yet more Rx info including yet another drug, I am not surprised at some of the results. Of course this is MY understanding- not medical advice.

LDN (Low dose Naltrexone) doesn't suppress the immune system- in fact it is theorized that it boosts it. That action in combo with its ability to block some pain and increase endorphins( feel good hormones) I am not surprised that this Rx might work well ( theoretically) post angioplasty. This is very different than most of the othersI have read about- Avonex,Copaxone,Cladribine,Gilenia,Fingolimod......

And my suggestions for all pwMS-make sure you completely understand how your specific drugs or treatment works........ not the statistics ..........the actual way that the drug company says it works. If you can not find it in lay terms- call the drug company ( they are making thousands of dollars per month- you deserve a clear understanding) or ask your pharmacist or your Doctor.

Make sure you understand all of the side effects too.( I know the drug inserts are overwhelming) but the time to learn side effects is NOT after they appear.

My quest for the latest information continues.
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Postby jgkarob » Wed Sep 08, 2010 7:21 am

Actually, according to the LDN Trust info in the UK, in RRMS, LDN modifies the immune system, not boosts it.
It actually works in a similar way to Rebif, strengthening the blood/brain barrier and this is why I take both together.

In my layperson's view, it may work in a different way for PPMS. This is just from observations over the years at various forums.

For many years, people with RRMS who were on beta-interferon, were told that they can't take both together. It wasn't until 2009, that this view started to change. The LDN conference in Glasgow covered this and was the subject of a quite heated debate.

Dr Gilhooly says yes, you can take both together. Others, like Dudley Delany and Dr Lawrence say no.
I take both together and so far I haven't burst into flames in direct sunlight or more importantly, had a relapse since taking both at the same time.
I did have a relapse on LDN alone (having run out of Rebif after moving here).
I was not a happy bunny as it meant a two week stay in hospital.
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