MS medications before and after CCSVI...thoughts?

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

MS medications before and after CCSVI...thoughts?

Postby javabean » Tue Sep 28, 2010 6:57 pm

As I am getting closer to the delivery of my baby and my treaqtment in Albany in January, many questions are percolating. I just switched to a new neuro who, like the previous one, wants to wait on CCSVI until there is more research, so I'm not comfortable posing these questions to her.

My question:
The neuro wants to put me on Copaxone after the baby is born. I was on Rebif until last June, so have taken no dmd's for over a year. Is starting copaxone before and continuing after CCSVI an issue? Same thing with Neurontin and Ampyra. Never taken either of those and it would only be about a month between taking those and getting the procedure. I don't know what the gereral thinking of the IR's (or others) is about the relationship of these meds to CCSVI before or after.

Sorry for the confusing question. I think I may have too much time at the moment to mull over these things. I realize we have no absolute answers but if some people can share their experiences or things they've heard and read, that would be great.
Thanks!
User avatar
javabean
Family Member
 
Posts: 73
Joined: Sat Jun 05, 2010 2:00 pm

Advertisement

Postby joanp » Tue Sep 28, 2010 7:59 pm

if u can, perhaps hold off on the meds and then see what happens after your procedure.
User avatar
joanp
Family Member
 
Posts: 48
Joined: Fri Feb 26, 2010 3:00 pm

Postby Cece » Tue Sep 28, 2010 8:40 pm

Zamboni recommends staying on the DMDs. Here on the forum MegansMom made a convincing argument that DMDs have only been tested in cases of untreated CCSVI/MS and not in cases of treated CCSVI, so we don't know what good or harm it does to modify the immune system in post-liberated patients.

I don't think there are any issues with starting the drugs and then having the procedure, but check with your IR for any possible drug interactions with blood thinners or that sort of thing. One concern would be that you wouldn't know if it's the liberation procedure or the new drug that would be responsible for hopefully any improvements you may experience.
Cece
Family Elder
 
Posts: 9054
Joined: Mon Jan 04, 2010 3:00 pm

Re: MS medications before and after CCSVI...thoughts?

Postby drbart » Tue Sep 28, 2010 10:30 pm

I assume your doctors are switching you to Copaxone post-delivery because it would be a bad idea to be taking immunosuppressants while nursing.

I'd worry also about neurontin etc.

I would consider going off MS drugs only if you experience significant improvement from your procedure. Depending on who does it, and not knowing anything about your condition, you have something like a 30%-50% chance of having such improvement.

If you don't experience improvement, I wouldn't expect the treatment to have stopped or slowed your progression.

(..and I'm not a medical doctor..)
User avatar
drbart
Family Elder
 
Posts: 103
Joined: Tue Apr 06, 2010 2:00 pm

Postby Johnson » Wed Sep 29, 2010 12:31 am

I can't help chiming in.

These are just my personal views, and I have no medical training beyond para-medic, so no professional opinion is implied.

I believe that breast-feeding for as long as you have the strength is critical to the well-being of your baby. I don't think that any drug is good to ingest during pregnancy or nursing unless it is critical to the survival of mother and/or baby. During pregnancy, the immune system is already suppressed naturally (or I am grossly misinformed). I don't know about DMDs, but it seems that they are immuno-suppressant, largely. That seems an extreme prescription for a pregnant woman, to me. The angioplasty is a day procedure. If it were me, I would wait until post-partum and do the procedure ASAP, no drugs.

Again, I am not a doctor, and I have a bias against even aspirin. I am not an authority by any stretch of the imagination, but if the baby doesn't have "MS", why treat the baby? Pardon me if I seem out of line. I have just seen too few doctors with common sense. They tend to "treat" diseases as they know how, and fail to treat the patient.

Best of luck, and I hope you have a beautiful baby. They are all beautiful in any case.
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 3:00 pm
Location: Ucluluet, BC

Drugs for MS after birth

Postby MarkW » Wed Sep 29, 2010 3:43 am

Hello Javabean,
Before offering any advice I two questions:
Do plan plan to breast feed your baby ?
When are you planning your de-stenosis ? ie how soon after the birth.
You are going to need to talk to your vascular surgeon/IR, neuro and a pharmacist who specialises in drugs in babies to get a full answer. I can help in the questions to ask them.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
User avatar
MarkW
Family Elder
 
Posts: 1151
Joined: Thu Oct 19, 2006 2:00 pm
Location: Oxfordshire, England

Re: MS medications before and after CCSVI...thoughts?

Postby Cece » Wed Sep 29, 2010 9:33 am

javabean wrote:I don't know what the gereral thinking of the IR's (or others) is about the relationship of these meds to CCSVI before or after.

I don't think the meds have a relationship to CCSVI. They're for the treatment of neurological issues of MS (for the Neurontin & Ampyra, I think) and the treatment of the immune system (for Copaxone).

The neurological damage caused by MS will remain even after CCSVI treatment, although there is hope for some healing. The immune system may remain in need of modifying post-treatment, may no longer need modifying, or may never have needed modifying in the first place because the whole autoimmune theory was in error. So the second one, which is continuing to take DMDs, has no clear answer. For the first, it makes sense to still take Neurontin or Ampyra if a person gets symptom relief or neurological improvements from them.

I nursed for a year after my youngest son was born, then went onto Copaxone afterwards. My doctor did not want me nursing while on Copaxone. But nursing is a very personal issue especially for someone with chronic health issues. It would tire me out and I would crash afterwards. But it was rewarding as well.
Cece
Family Elder
 
Posts: 9054
Joined: Mon Jan 04, 2010 3:00 pm

Postby javabean » Wed Sep 29, 2010 12:16 pm

Thany you so much for your responses! As much as I know breast feeding is the best thing for the baby, I do not plan on doing it becasue my body is already struggling to get through. The weakness/spasticity? in my legs really slows me down.
Good to know that Zamboni reccommends staying on treatment after the procedure. So many things to consider...
I really do appreciate all your feedback.
User avatar
javabean
Family Member
 
Posts: 73
Joined: Sat Jun 05, 2010 2:00 pm

Postby hlm286 » Wed Sep 29, 2010 12:46 pm

I have a 3 month old and am exclusively breastfeeding. My neuro told me (which I also found in research myself) that breastfeeding is actually more protectant from relapses than the DMTs. Studies have shown that exclusively breastfeeding mothers had relapse rates lower than those who chose not to breastfeed to go back on their DMTs. Not only do I feel that breastfeeding is great for my baby, I feel great myself, and it's completely natural so I don't have the stress of taking meds or the side effects. I don't know what my plan is as of yet for when I stop breastfeeding, (I have never been on any DMTs and will consider my options when the time comes) but I figured I might as well enjoy the benefits of breastfeeding as long as I can because it's such a short period of time anyhow. Please just don't be afraid of having a relapse if you don't jump back on the DMTs and decide to breastfeed, new research has shown it to be better protection. I know breastfeeding can be tiresome, but there are so many benefits! It also helps me lose the baby weight quickly which helps you gain more energy, confidence and be happier as well. Lol, I feel like I sound like I'm trying to sell you something, believe me, I'm not, I strongly believe to each their own, everyone has the right to their own choices and I don't like to push my beliefs on others, I just wanted so share some information :)

Good luck with whichever route you choose and with your new baby!
User avatar
hlm286
Family Elder
 
Posts: 100
Joined: Sat Jun 27, 2009 2:00 pm
Location: Ontario

Postby MegansMom » Wed Sep 29, 2010 2:01 pm

Hi JavaBean,

My very best wishes to you for an easy birth and a happy healthy baby.

I read ( and listened) to Dr B B Lee with particular interest. He is the embryonologist thats been studying the valves and veins of persons with MS and CCSVI.

Here is one of his papers: http://www.fondazionehilarescere.org/pd ... 8-ANGY.pdf

There is a part where he describes the vein tissue as mesenchymal- a type of tissue that responds to hormones- he specifically mentions pregancy.

I think this type of tissue (if my memory serves me)responds to certain hormones by becoming very stretchy and elastic- distensible. If this is true it falls hand in hand with why pregnant women do not experience MS attacks and then a few months after pregnancy (after the tissue goes back to the pre-pregnant state) they have an attack......this with nursing causing hormones to continue to be secreted also falls in line.

As for your question, since this (Copaxone) is not a drug you are continuing on but newly starting. Why not wait until after your angioplasty?

My daughter (dx Aug/angio Sept) said she is going to give it a year and see how she does without the DMDs. She is completely symptom free though,

So I would encourage you to wait and see how you feel after the procedure.

My best to you.

Cat
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)


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