Who has had angioplasty and stopped drug treatment?

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

Who has had angioplasty and stopped drug treatment?

Postby fogdweller » Sat May 07, 2011 12:32 pm

I am curious if anyone who has had angioplasty has stopped taking DMDs? I know Zamboni and others advises continuing to take them, but I was wondering if some pwMS fet didn't nned them anymore.

If so this would be very powerful evidence to give insurance companies. Those drugs are very expensive, are given for many years, and don't reduce other medical treatment for symptoms very much. Angioplasty is a relatively cheap, one time thing. The evidence that the insurance company may escape the huge drug expense in favor of a cheaper angioplasty expense will be more persuasive than patient improvement alone.

Of course, now that they have take a stance that this is experimental, even evidence of pwMS no longer needed DMDs will be apocryphal and they won't be able to take that position.
User avatar
fogdweller
Family Elder
 
Posts: 412
Joined: Tue Dec 08, 2009 3:00 pm

Advertisement

Tysabri

Postby Rosegirl » Sat May 07, 2011 1:18 pm

I stopped taking Tysabri just before treatment in July 2010. I only had one symptom. For over 20 years walking became increasingly difficult. My venogram proved that I had a vascular problem. With the agreement of my neurologist, we agreed that I could stop taking Tysabri, especially since I'd been on it almost two years. Assuming I had no problems, I could discontinue it permanently. It's been nine months without Tysabri, and there has been no problems without it.

Others who have more symptoms should consider staying on their meds.
User avatar
Rosegirl
Family Elder
 
Posts: 241
Joined: Sat Jan 23, 2010 3:00 pm

Postby Donnchadh » Sat May 07, 2011 1:44 pm

I never took "MS" drugs before or after the CCSVI procedure, Dia Linn.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
User avatar
Donnchadh
Family Elder
 
Posts: 513
Joined: Sat Jan 23, 2010 3:00 pm

Betaseron

Postby fiddler » Sat May 07, 2011 1:47 pm

I stopped taking Betaseron last fall, but because my liver enzymes were up as much as because of my "liberation". However, if I (rather than my insurance company) was paying, I probably would have stopped injecting as soon as I was liberated (or never started). Given I'm SPMS, my neuro gave me the impression that the Betaseron prescription was just a "hail Mary" shot, anyway.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
User avatar
fiddler
Family Elder
 
Posts: 398
Joined: Wed Dec 02, 2009 3:00 pm
Location: Fredericton, Canada

Postby Cece » Sat May 07, 2011 2:24 pm

I stopped my Copaxone in August both out of a sense that it wasn't doing anything and because of lipoatrophy divots and constant welts and the UK report on the DMDs and assuming that if Copaxone is little better than placebo I could save some money and let my supplements and CCSVI venoplasty provide that placebo effect. Still debating the decision though.
Cece
Family Elder
 
Posts: 9044
Joined: Mon Jan 04, 2010 3:00 pm

Postby EJC » Sat May 07, 2011 2:29 pm

Emma stopped Copaxone for pretty much the same reasons as Cece.

After 12 months on it she didn't feel it was doing anything. The fact the manufacturer or it's representatives couldn't actually expalin how it worked or what it did helped make the final decision.
User avatar
EJC
Family Elder
 
Posts: 616
Joined: Tue Apr 20, 2010 2:00 pm
Location: Surrey, UK

Postby MaggieMae » Sat May 07, 2011 2:49 pm

My husband had the procedure five weeks ago with Dr. Sclafani. He has been on Tysabri for over three years. His neurolgoist wants to take him off of the Tysabri because he tested positive for the JVS virus and had taken methatrexate (many years ago) for about four years. He said most of his patients test positive for the JVS virus but it is the combination of the JVS antibodies and the cancer drugs that increase your chance of developing PML. He suggested the new pill Gilenya. Gilenya scares me too but he feels in my husband case it is safer. We have not decided what to do. Should he not take anything? Should he consider Copaxone? Will he have the increase in lesions or decline after stopping the Tysabri (that many talk about)?
User avatar
MaggieMae
Family Elder
 
Posts: 380
Joined: Wed May 23, 2007 2:00 pm
Location: Pennsylvania

Postby Johnnymac » Sat May 07, 2011 3:18 pm

Maggie, make sure you and your husband ask your neuro about the risk of IRIS when discontinuing the use of Tysabri. My wife had a rather scary set of symptoms when she stopped Tysabri (was on it for 2 years), she had a near constant tingling on the back right side of her skull, developed severe ataxia in her right hand and it scared the heck out of both of us. MRI showed she had swelling in her brain that her Neuro said was Immune Reconsititution Infalmatory Syndrome (IRIS). She was immediately put on intravenous steroids for 3 days to help with the swelling. It took about 2 weeks but she got better, the tingling went away as did the ataxia, she continued to have slight improvements over the following 3 months after the steroids, during which time she got back on Copaxone (she took copaxone for about 9 months before getting on Tysabri).

Copaxone, from our understanding is like a synthetic myellin, and works by providing extra protection from lesions forming when myellin is destroyed.

She just had the liberation procedure yesterday, and is continuing the use of Copaxone for now, we will see what the future holds.
User avatar
Johnnymac
Family Elder
 
Posts: 213
Joined: Wed Oct 18, 2006 2:00 pm

Postby fogdweller » Sat May 07, 2011 3:41 pm

Hmm. I was hoping that the lack of need for continued drug therapy would provide an argument that the insurance companies could save money in the long run by paying for the angioplasty, but it doesn't sound like anyone is deciding not to use DMDs becuse the angioplasty made them unnecessary. The reasons for not using them are factors other than the angioplasty. It was a thought.
User avatar
fogdweller
Family Elder
 
Posts: 412
Joined: Tue Dec 08, 2009 3:00 pm

Postby Filmmaker » Sat May 07, 2011 6:28 pm

Hum Johnnymac, why is IRIS a bad thing, maybe it was trying to rebuild brain tissue.... and I think this resolves spontaneously anyway...
User avatar
Filmmaker
Family Elder
 
Posts: 194
Joined: Fri Nov 13, 2009 3:00 pm

Postby formyruca » Sat May 07, 2011 6:37 pm

I have never been on any MS drugs or MS symptom drugs. I hope that this fact will help me if I have a problem with insurance. Otherwise, I may just order the drugs and throw them away?

It would probably make a good poison for the weeds growing in the cracks of my driveway.
User avatar
formyruca
Family Member
 
Posts: 29
Joined: Wed Aug 04, 2010 2:00 pm

Postby EJC » Sun May 08, 2011 5:56 am

fogdweller wrote:Hmm. I was hoping that the lack of need for continued drug therapy would provide an argument that the insurance companies could save money in the long run by paying for the angioplasty, but it doesn't sound like anyone is deciding not to use DMDs becuse the angioplasty made them unnecessary. The reasons for not using them are factors other than the angioplasty. It was a thought.


The reason most IR's will suggest continuing and DMD's is for continuity.

It is difficult to know what casues any imporvements or regression if you make two major changes in one go.
User avatar
EJC
Family Elder
 
Posts: 616
Joined: Tue Apr 20, 2010 2:00 pm
Location: Surrey, UK

Postby Johnnymac » Sun May 08, 2011 6:55 am

Filmmaker wrote:Hum Johnnymac, why is IRIS a bad thing, maybe it was trying to rebuild brain tissue.... and I think this resolves spontaneously anyway...


Swelling in the brain is not a good thing
User avatar
Johnnymac
Family Elder
 
Posts: 213
Joined: Wed Oct 18, 2006 2:00 pm

Postby MegansMom » Mon May 09, 2011 2:41 am

My daughter was diagnosed with MS Aug 2010, and was sent home with 2 literal backpacks of promotional literature from the MS drug companies each vying for her decision to " pick them", mugs, scarves, folios, diary books, calendars, etc. She was asked by her neurologist to "pick" which DMD.

Instead she chose to get diagnosed and treated for CCSVI Sept 21, 2010.

She made the decision to "see how it goes" without DMDs because her symptoms abated on the day of and after the venoplasties. It's easier to not start than to stop. She said she wanted to give it a year and assess relapses and need. So far , so good.

She HAS saved her insurance company thousands this past 8 months.
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-
User avatar
MegansMom
Family Elder
 
Posts: 200
Joined: Sun Aug 22, 2010 2:00 pm
Location: Central FL ( near Ocala)

Postby MaggieMae » Mon May 09, 2011 5:00 am

Thanks Johnnymac. I will ask his neurologist about IRIS.

If my husband was in the beginning phase of this disease, I would tell him to NOT take any meds, but unfortunately he was diagnosed in the mid 70's. There is much damage to his system.

It is hard to know what to do.
User avatar
MaggieMae
Family Elder
 
Posts: 380
Joined: Wed May 23, 2007 2:00 pm
Location: Pennsylvania

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service