Lemtrada available in Mexico- Hospital that agreed to infusion

[misslux]

I would sure hate to be making a potentially life or death assumption.

I don't disagree with your comments about medical tourism, but I'm unclear how it relates to Katje's answer of Rocky Mountain doing trials to someone's question (who resides in the US) of who is doing the trials.

[Marco]

misslux and Katje please accept my apology if I made a mistake in reading comprehension. The comment was more about medical tourism and the OP stating they were going to Mexico for Lemtrada.

-> If you are in a drug trial the physicians will do anything necessary to help participants.

-> If you are doing medical tourism for any reason ensure you will have competent medical care for any complications. Even if "Mexico" or wherever will treat complications do you have the funds and ability to return?

Again, please accept my apology ...

[misslux]

Totally agree with you medical tourism comments!

[69Mustang]

What did you hate about Tysabri? I am thinking of trying it out.

I am JCV AB+ with a high titer and 64+ months on therapy. This puts me in a very high risk group for PML.

If you are JCV - and new to Ty it is a great drug with few side effects. If you are JCV - I believe it to be the best thing out there as far as efficacy and low risk.

Even in my case of high risk for PML, my neurologist says no patient has ever progressed to PML after moving dosing every 8 weeks.

8 week dosing though is tough because your MS starts to break through- whatever your personal problems are with MS, they begin to manifest.

[Katje]

My MS is pretty inactive overall. My Neiro suggested it because I want surgery and I think he feels I might relapse. However I am afraid to be on tysabri and have surgery at the same time. Seems unsafe to me.

[winhelen]

lemtrada in canada or mexico

I've been trying to get a neurologist or MS clinic in Canada to agree to treat me with Lemtrada, but I've failed despite many phone calls to hospitals, clinics, doctors, Genzyme Canada and the MS Society of Canada. Has anyone succeeded? I'm interested in Mexico too, but that's much further for me to travel. I'm looking for any information or leads from anyone.

[helenwinternitz]

lemtrada in canada or mexico

I'm still trying to get Lemtrada, in Canada or Mexico. If anyone has further information about how to go about this, please respond. I'd like email messages too, if you can get my email address from my profile.

[69Mustang]

My MS is pretty inactive overall. My Neiro suggested it because I want surgery and I think he feels I might relapse. However I am afraid to be on tysabri and have surgery at the same time. Seems unsafe to me.

True confession- I am also a Nurse Practitioner but obviously I can't give personal advice. But I read all the research I can.

The time to use DMT is early in your disease when they can make the most difference- usually this is the time you are not having major symptoms or exacerbations. Once the damage is done there isn't much the current drugs can do for you.

I had elective surgery last fall on Ty. I did have to extend the period of routine post-op antibiotics but otherwise had no problems.

Talk to both your surgeon & Neurologist about your concerns but also know that making no decision is a decision.

Take care

[69Mustang]

I've been trying to get a neurologist or MS clinic in Canada to agree to treat me with Lemtrada, but I've failed despite many phone calls to hospitals, clinics, doctors, Genzyme Canada and the MS Society of Canada. Has anyone succeeded? I'm interested in Mexico too, but that's much further for me to travel. I'm looking for any information or leads from anyone.

I have EMd with a doctor in Vancouver. The CA MS Society is meeting in approx 2 months to set national protocols for Lemtrada administration. If you have a contact there keep checking in. The more of us who do, the better.

My Neuro recc I go with a clinic in CA or the EU who participated in the clinical trials & then he would follow me here post infusion.

I need to do more research to find out the names of those sites. I am a bit nervous about Lemtrada but Ty isn't doing the great job it used to so I know the risks of Lem & think this is best for me.

[Penn_Doc]

Thank you for the tip

Hi Mustang,
Thank you so much for the tip as to a Mexican hospital willing to prescribe alemtuzumab. Do you have the email address and specifics, or should I reach out to the neurologists at the hospital you mentioned? I have been looking for foreign options since the FDA rejection, but have had limited success. After much back and forth with Canadian MS facilities, none are willing to assume the risk for what is considered non-emergent therapy. "Because I have never treated a foreign patient in a non-emergent setting with a medication that has the potential for significant side effects before, I contacted the Canadian Medical Protective Association, which is the organization that provides all licensed physicians in Canada with legal coverage and advice. I explained your situation to them, and they informed me that unfortunately, they will not be able to cover me at all legally if I am treating a foreign patient non-emergently. This unfortunately puts me in a very difficult position, as Lemtrada has the potential for severe adverse events. As a result, I do not think I will be able to prescribe and treat you with Lemtrada..."

I am also looking into Singapore, India, Malasia, Germany, Sweden, and Holland. I will share what I find. If it weren't for the Campath withdrawal, a buyer's club would be in order. BTW, both my wife and I are both practicing physicians, we have read the clinical trial data, and having failed Tysabri believe this is the best option all things considered. The FDA really blew it on this one.

Keep up the hope everyone, and please share any insight into possible treatment sites.

Regards,
PD

[helenwinternitz]

lemtrada in canada or mexico

Hello Mustang or anyone else,

I'm trying to get Lemtrada infusions in Canado or Mexico. So far, I've had no luck with Canada after telephoning the MS Society of Canada, Genzyme Canada and St. Michael's MS Center in Toronto, a premier MS research clinic. The head of the clinic says Lemtrada "is too complicated to administer to foreigners."

I'm starting to investigate Mexico.

[69Mustang]

Update

Canada will not set protocols for infusing their patients for several months. Then the priority will be Canadians. Personally I do not want to wait.

On my Neuro's advice I contacted clinics who participated in the CARE MS I and CARE MS II trials. To see a list of these go here:

http://clinicaltrials.gov/ct2/show/N...cr=Open&rank=1

http://clinicaltrials.gov/ct2/show/s...ow_locs=Y#locn

You can find a link to Contacts & Locations towards the bottom of the page.

Here is my progress to date:

Bad News:
Cant seem to get anywhere with the 3 Mexican sites. One actually told me they did not participate in the trial, although they are listed. I am from Texas so Mexico is closest for me.

France will not be infusing until October or so. The Dr. I emailed with there encouraged me to never smoke and take Vit D, which I thought was a nice touch.

No response yet from London.

Good News
I have found 3 doctors 1 in each Bonn, Hamburg and Dresden who are willing to provide the medication. One said that just the med would be 50,000 Euros (about 70K US) but he wanted to check with his front office for sure and then the travel costs and possible other hospital related costs. Another doctor wanted to help me file on my US health plan. All three (they do not know I am taking to others) want to ensure I am followed by my Neuro here.

The Czech Republic has a program in Prague. I am in early stages of setting that up. They have an actual medical tourism company so that would help with travel etc. My Neuro has ties to the Prague hospital (interns have visited my MS clinic to shadow him- I have actually been the patient for some of these visiting doctors) so I feel safe with these 4 options.

I am currently trying to track down the Lemtrada protocol. I know the basics of the infusion procedures & what to expect but I need to make sure all my bases are covered here before I go (labs, MRI, chest xray) and I want to know what the protocol will be when I return.

My neuro is supportively reluctant- giving me 2 options- Tysabri q8wks or Lemtrada. He wants me to go with the former, I want to go with the latter. I am trying not to rock the patient/doctor relationship too much here by being too pushy so I just need to spend the time to do more research of my own. He has agreed to continue as my primary neuro whichever I choose.

As someone who WAS a principle investigator in several clinical trials (for HIV, Hep C, etc) it is frustrating to not be able to just call someone and get the protocols faxed right over. I will just have to be more resourceful. if anyone has a copy of their informed consent from CARE MS II I would really like to ready a copy.

They may be google-able...? I will work on that.

I am sure I will have updates this week RE: tmt options and costs in the EU. I will try to get back here to post them.

Feel free to email me (I dont really know how that works on here) if you would like. The email listed is a 'junk email' i check once a day- because I didnt know what to expect as far as spam when I first signed up here so I may not see it until the evening.

I have the personal emails of all three docs in the Germany cities listed above. I am not allowed to post them here but If you are able to email me personally I am happy to provide them.

Take care out there.

Nice to know we have a large supportive team for each other!

[69Mustang]

They informed me that unfortunately, they will not be able to cover me at all legally if I am treating a foreign patient non-emergently.

In talking with approximately 5-6 Canadian doctors I have not heard this reason.

if you prefer Canada I would encourage you to email the neurology department at every university hospital you can find an email for.

There were pioneer doctors here doing off label Campath for years- you are likely to stumble upon one with diligence and some researching. I found emails for Canadian doctors were much easier to find than those in the EU so create a form letter and go email hunting.

If you want a copy of my form letter I am happy to email it to you if you can figure out how to email me personally within this forum.

Just keep plugging away, is really all that keeps me going- hope that things will improve!

[helenwinternitz]

lemtrada is available in mexico, most probably

This is good news, probably, for those of us willing to go to Mexico. Thanks to Mustang 69, I contacted Hospital Galenia in Cancun and spoke with Olivia Laviada, chief of sales and medical tourism. The hospital wants to treat MS patients with Lemtrada. You can contact her to get things going. Her phone number, email ***

I also spoke with Dr. Jose Flores Rivera, a research neurologist in Mexico City who treats patients at the Methodist International Hospital. He seemed eager to treat American patients.

I'd like to hear what you and others think. Maybe we can really get something going.

**Phone and Email address removed by Moderator in compliance with MSWorld Guidelines.**

[69Mustang]

Thanks Helen,

I didn't see an email in your profile to contact you directly. I have more news on Mexico today and I might go there soon for treatment.

I wanted to share resources with you. If you click my name & are able to email me personally please do so.

Best of luck!