URGENT: Can someone here please let me know where I can get Lemtrada infusions?

[LillyMS]

I'm trying to find what countires and doctors do the Lemtrada infusion for MS since it is not apporved in the US.

 

If anyone here can please kindly be of any help in finding the mentioned it would be very appreciated.

 

Thanks.

[Nick]

Hi Lilly,

 

'Lemtarda' is one trade name for the drug alemtuzumab also know as Campath 1H see here: http://www.mult-sclerosis.org/Campath1H.html and a fact sheet from the trust here: http://www.mstrust.org.uk/shop/product.jsp?prodid=248

 

Also see here as to what stage they are at which in the case of the NHS is at the very last stage (Appraisal)

 

http://www.mstrust.org.uk/research/drugsindevelopment/

 

 

Hope that is useful

 

Nick

Edited 29 Mar 2014, 5:48 pm by Nick

[LillyMS]

Thanks, I do know people are gettng the infusions. I saw someone posting somewhere claiming they are having it done in the UK. However, I am having difficulties finding a doctor (which country doesn't matter) that is currently doing Lemtrada infusions for MS. I know it is approved thus far in 30 countries... at least that is what I gather from what I read.

 

If anyone here is currently on these infusion for MS I would be very grateful to hear from you... where and what doctor is doing it.

Edited 29 Mar 2014, 7:09 pm by LillyMS

[Nick]

Some people will have been involved on the trails, I myself am on just such a trail involving a different drug. This article is also of interest which may explain what is happening.

 

http://www.pharmatimes.com/Article/12-08-21/Sanofi_withdraws_Campath_in_US_and_EU.aspx

 

Nick

[LillyMS]

Thanks Nick, if you don't mind me asking... what drug on you on a trial for?

[Nick]

I'm on a two year trail called 'Ascend' The drug is Natalizumab, sometimes called Tysabri. This is already used in RRMS but the trail is to see its uses with SPMS in regard to improvements in mobility. I was diagnosed with SPMS in 2008 and now understand that in all probability I have had the earlier forms of MS for many years without diagnosis. The drug is a once a month infusion, involving a trip to hospital lasting two hours. When I was first diagnosed it took me a long time to understand that my specific condition was unsuitable for any DMD's. This is perhaps one of the most difficult aspects of MS to get to understand. Of course, not having a cure is very scary when it's you, but that is far from the end of the story. I had not realised that lifestyle played such an important part in working to help alleviate some of the MS affects. Anyway I was asked by my neurologist if I would be interested in any involvement with studies or trails. I took that up and have done various things such as 'model patient' for GP's exams, acting as an 'expert patient' at my local health centre, as well as getting involved directly with providing information at a local 'MS Information Point' setup which has since lost it's funding. Getting involved like this has been good for me and has always opened up the possibilities of other things. Trails, such as the one I am on are run by first looking for specific patients, that might fit the criteria. These criteria will be different for each trail, So you could say it was by chance that I fitted the profile for that particular one. If you are interested then you should ask about this at your next appointment with the neurologist.

 

Nick

Edited 30 Mar 2014, 9:50 am by Nick

[orono]

Hi Lilly,

It's been a couple of years since my last post here I see. I have noticed an increase in questions about Lemtrada on different forums so I thought I would update on my experience with Lemtrada (I took it when it was Campath).

 

I live in Sweden and was treated at my nearby hospital. I was not part of a study. I received it off label and was covered under the national healthcare system. So no charge for me. I don't know whether neurologists would treat patients from other countries here due to the post monitoring that is required.

 

I think what is super important to understand is the follow-up monitoring that is necessary after treatment. I am nearly three years post the second treatment and I am still going for monthly blood and urine testing. My neuro wants me to continue for another year. That means at the end I will have had monthly blood and urine tests for 5 years total. The post-treatment monitoring is critical due to the serious side effects that can occur. If the side effects are caught early, they are treatable. If they are not caught, they can harm and result in death. It is also very important that patients are educated in understanding what signs to look for. I have not had any of the serious side effects.

 

In my opinion and my neuros, I am doing pretty well. I continue to be stable with no disease activity. The past two MRIs (taken a year apart) show no new plaques and normal brain volume. I can run 10 km, headstands in yoga, x-country ski and swim. I bike to and from work. My EDSS is 2. I still work 50 %. My biggest complaint continues to be fatigue which contributes to cog fog. What I have found to help somewhat with the fatigue is a change in my diet. I didn't have a poor diet before. I no longer eat white flour, white rice, pasta (any kind), white sugar or anything processed. I take no other medications. I do take vit. D drops once per week during the winter months.

 

I feel Campath was a good choice for me, but I fully understand it is not a treatment for everyone. It's important to learn as much as you can so you can make an individual, informed decision. I am happy to answer questions to the extent that I can.

 

Good luck to you!

 

[LillyMS]

Thanks so much for your reply. Could you please kindly let me know your doctor's name/phone number? I am actually a swedish citizen (tri- citizen).

 

If you could please PM me that info I would be very grateful.