HiCy & Returning Relapse Rate?

Kerplunk20 · Newbie Joined: May 27, 2008 Posts: 7

I have been watching this board for about six months and finally made the call to Carrie this morning.

As a short backgrounder, I have had MS for 14 years but you would never know it by looking at me. I work 10 hour days at work and don't seem to have some of the problems some of the other MS'ers have with heat and fatigue (I feel very lucky!).

Back to the call, we talked about the program and then I asked her about the relapse rate from those who have been treated. She said they are seeing a 50% reactivation rate but are trying to improve that through the use of Copaxone. I said I have been on Copaxone for about 8 years.

So here are my questions...

For those of you that have done this did you know about this 50% reactivation rate?

Are you planning to do this again if it comes back?

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 405

Yuppers I had heard of that.

I quit the Copaxone right before my MRI to have them look at for qualification. Before that all my MRI's were actually really good. I just felt like shit and kept getting worse. My hope is the MRI I have on 6/9 ( my birthday and 4 year anniversary of the MRI I had that confirmed MS ) it is not lit up and there is nothing new. If we got that I win because I am already feeling better. Getting better is a lot like getting worse. Really slow.

In animals they can't give them MS if they have Copaxone first. The thought is Copaxone trains the immune system to not go crazy. Now that my immune system is not crazy I will be taking Copaxone for 6-12 months to hopefully train my immune system to not reactivate the MS.

If I go back for my three month appointment on June 18th and they tell me they want to do it again I will be there as soon as they can get me in. The quality of life I have now compared to March is 100x better. The couple of days of being sick is way easier than having this disease.

I would do this 20 times before I ever consider a shot of any of the RABS (I take C for a reason) or any of the other crazy stuff they want to give you in a desperate hope to slow this horrid disease up.

Jamie · Family Elder Joined: Jan 08, 2008 Posts: 162

I think that's 50% after a sustained period of remission (2-3 years), I think very few get no relief.

Kerplunk20 · Newbie Joined: May 27, 2008 Posts: 7

Thanks for answering Chris and Jamie and I have to say I admire the tenacity both of you have had in pursuing and getting this treatment.

I am thinking hard about this. As someone that has had this for 14 years and haven't had any real issues this is harder decision. I mean my quality of life right now is pretty great and has stayed that way for years. I can walk for miles, lay in the sun all day, etc. My MRI's haven't shown any spots in a long time either. I think the Copaxone is actually working really well for me.

I think that if I knew that it would be 100% no return ever I would do it. That 50% reactivation rate is not good but maybe the Copaxone after treatment is going to fix that.

And new advances are coming all the time. When I was first diagnosed there were no CRABS only B and there was a lottery for who got to take that.

Jamie · Family Elder Joined: Jan 08, 2008 Posts: 162

Well that's was our goal.

We're not expecting a cure, although I sometimes get carried away and call it that in my more giddy moments, we're just trying to buy some time.

I don't think this is something I'd consider in your position but if you're early, aggressive with a lot of inflammation this is your current best option without a doubt.

There's all kinds of antigen therapies 5-10 years away, hopefully this can buy some people some time until then and double triple quadruple wammy bonus prize - for some people, it hasn't come back.

Some people on this very forum who have gone through the protocol will win that lottery, in fact half of them will.

No other protocol can say that, let's keep perspective.

Plus, even if it's only 'dialed back' Mel's MS and makes the Copaxone work, that's an impressive gain. Rebif took away her quality of life substantially.

Hopefully, and from what I've read it seems reasonable to hope, Copaxone is tolerated by her easier.

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 405

Ya I tend to agree with my brit friend. If you are that well off I would wait. If you can go a whole day without MS bothering you I think I would wait or at least ask to participate in the trial when they start. The off label folk are those just begging to have this shit stopped so they can live just a little itty bit again.

I will say though, I really really really underestimated how bad I was until I look back.

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 405

Hey Jamie,

Copaxone is definitely better than all the other crabs. I can take it and still live.

2 buggers with it though. 1- it is everyday and I do forget once in a while. Yes I know it's my fault. 2- the reaction if you get it sux ass bad. It's like a mini heart attack acid trip all at once. I've had a couple but now I know what it is so it's no biggie and each one is less intense. I had the fun of it but I know of people who take it for years with no issues.

Trust me, if there is someone who is going to have issues with a MS procedure it's me I guess. Look at the fun I had with HiCy and no one else did lol.

Kerplunk20 · Newbie Joined: May 27, 2008 Posts: 7

The Copaxone is great Chris - don't forget to take it. It gets easier after the first few hundred times - LOL! I've had the reaction a few times - the first is the worst and now if I do happen on that rare occasion to hit a vein its more like 5 minutes and nowhere near as bad. Just lay down and let it pass over you (the flushing and shortness of breath will ease).

I am going to share something else that I think is important for you guys especially after the HiCy - take Vitamin D-3. I think it greatly improves your chances of it not coming back. Just look at the geographical incidence of MS. It can't hurt and your probably not getting enough of it anyway.

chrishasms · Family Elder Joined: Sep 15, 2006 Posts: 405

If I eat or become any healthier I will start to shit tree bark.

I was on the big C for 2 years before the HiCy.

Jamie · Family Elder Joined: Jan 08, 2008 Posts: 162

Thanks Chris, good info.

So the crazy reaction that I used to pay good money for in my younger times happens if you accidently hit a vein?

Cheers,

J.