Alemtuzumab (Campath)
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February 7, 2007 at 7:02 pm
does anyone know of any CIDP sufferers who have been treated with Campath? My son Dan who is 21 ,finished a 7 day course of this 12 days ago. We were told that he is only the 2nd CIDP sufferer to be treated with it , but that it has been trialed for MS. Not sure whether this means 2nd in UK or what. !2 days ago he was totally bed bound, unable to bend his legs,had to be fed, washed, total personal care etc. Today he can bend and lift both legs from the bed, hold a glass to drink from,and has washed and shaved himself (not too bad a job either!) Has also been upright for the first time for months using a stand frame and has taken a few steps using this. I pray that this progress continues ,and that finally something will stop the progressive path his CIDP has taken over the 4 years since he was dx. He has had prednisolone, azathioprine, methatrexate,plasmapheresis, cyclosporine, Cellcept,and for the past 18 months or so fortnightly IVIG (alternating 2 then 3 days). he has had a limited response to some of these, so we have been here before, but never so dramatically, so maybe this is the one!
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February 7, 2007 at 9:45 pm
I hadn’t heard of that drug. That is so wonderful to finally see some progress for your son after trying so many things. Take care.
Jerimy
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February 7, 2007 at 11:50 pm
I can feel your happiness and joy – I was praying for you and your son and waiting for good news, thank God for this -your son’s experience gives us all hope. All the best and please keep us posted with how you all doing.
P.S.
If it’s not to much asking, where in the UK ,Dan had the tretment done? -
February 7, 2007 at 11:57 pm
I have never heard of this treatment before, but I truly hope it is the miracle you have been looking for. I have always believed that there is a “magic bullet” out there for all of us who suffer from CIDP, but since we are all so different, it is never the same for any two people. I was in the same condition for your son for over two years, & was treated with twice weekly IVIG, 17 plasmapheresis treatments, weekly solumedrol infusions (prednisolone), imuran, etc. For me it finally was 9 months of massive cytoxan treatments that arrested my CIDP. But even then I had to wait about 6 months after my last infusion to see any nerve regeneration. It was a very slow recovery, & I still have some residuals…
Please keep us posted, maybe this can be the next miracle treatment for CIDP. And my heart truly goes out to your son, I know how horrible being in that condition can be, but I can’t imagaine it at his age, as I was 48 when my CIDP hit.
God bless him,
Pam -
February 8, 2007 at 4:30 am
thanks for your good luck messages for Dan. He is being treated in Liverpool, but we live in North Wales.The original patient to receive this treatment for CIDP was at University Hospital ,Cardiff I believe.We are currently waited to hear when he is to be transferred to a neuro rehab hospital.
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February 8, 2007 at 5:14 am
Alemtuzumab is the same class of drugs as rituximab (rituxan). I went through the same therapeutic journey as Dan, Rituximab did a similar miracle for me. Neither are registered for CIDP but have been used by neurologists. DocDavid
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February 8, 2007 at 5:21 am
Dan was originally going to have Rituximab ,but this was decided against for some reason .have read about several people having good results from this too,hope that you are still benefiting from yours.
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October 5, 2007 at 9:27 pm
Hi, this is actually Dan now… hi.
8 months later and after only one 5 day course of this ‘miracler drug’ I am still progressing and getting stronger every day.I am now living a pretty much independant life. So, from being completeley bed bound and having to be hoisted out of bed it’s a pretty impressive recovery!
I have just signed release forms for my case to be written up for medical journals. My Neurologist believes this treatment could benefit many more CIDP sufforers.
I believe only 2 of us have been treated with this drug for this particullar condition (worldwide). I will post a link to the write up so anyone that’s interested can have a gander.
Just thought I would share that with you all.
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October 5, 2007 at 10:08 pm
DAn,
That is wonderful news, it gives so many people hope! Please post your progress often, I would love to read it!
Dawn Kevies mom -
March 20, 2011 at 8:33 pm
[QUOTE=Dawn Kevies mom]DAn,
That is wonderful news, it gives so many people hope! Please post your progress often, I would love to read it!
Dawn Kevies mom[/QUOTE]Eu estou tentado a utilizar esta droga também,pois o percebo os avanços de forma clara.Se alguem souber algo que contradiga nos dias de hoje o tratamento com esta droga por favor me respondam
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March 20, 2011 at 10:36 pm
[QUOTE=edvaldo]Eu estou tentado a utilizar esta droga também,pois o percebo os avanços de forma clara.Se alguem souber algo que contradiga nos dias de hoje o tratamento com esta droga por favor me respondam[/QUOTE]
I translated the above post to English…in case anyone has any info to share. Thanks to Google Translate for the help.
“I’m tempted to use this drug as well, because I see the progress so clara. Se anyone knows anything that contradicts these days treatment with this drug please respond”
Kelly
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March 21, 2011 at 12:37 pm
Edvaldo-
“Alemtuzumab podem oferecer uma alternativa de tratamento para um subgrupo de início precoce IVIG pacientes dependentes CIDP não convencionais agentes imunossupressores, mas as preocupações sobre a toxicidade pode limitar seu uso.”
Alemtuzumab may offer an alternative treatment for a subset of early onset IVIG dependent CIDP patients failing conventional immunosuppressive agents, but concerns about toxicity may limit its use.
the source: Journal of Neurol Jun 2010 at
[url]http://www.ncbi.nlm.nih.gov/pubmed/20049473[/url]
On the other hand, lots of things we take contain that caution.
Por outro lado, muitas coisas que tomamos conter esse cuidado.
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March 21, 2011 at 12:42 pm
you show off Yeuhan!!! i had to pull out my spanish dictionary!!!!
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March 21, 2011 at 12:47 pm
[QUOTE=Dawn Kevies mom]you show off Yeuhan!!! i had to pull out my spanish dictionary!!!! :)[/QUOTE]
Thanks, but I don’t deserve any credit. I also used Google translate, English-Portuguese and reverse. The web site is very useful. Look For Google language tools.
[url]http://www.google.com/language_tools?hl=en[/url]
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March 27, 2011 at 7:13 pm
Obrigado A Todos Que Postaram, EstÃo Me Auxiliando A Tomar A DecisÃo De Tomar Este Medicamento. O Que É TÃo Dificil Pra Mim Em Utilizar Este Medicamento, É Pelo Fato De NÃo Haver Certeza De Que Minha DoenÇa Possa Estar Relacionado A IntolerÂncia A Glicose, Associado A Alguma Outra DoenÇa. Fiz O Maximo De Exames Aqui No Brasil Em Proximo A Centros De Excelencia,mas Observo Que Mesmo Ai No Usa Algumas Pessoas Ficam Inseguras Em Seus Diagnosticos.obrigado Pela InformaÇoes Continuarem A Investigar
Edvaldo
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April 18, 2011 at 1:05 pm
does anyone know if this AR4 person is still around and how her son is doing with this treatment or anyone else try it?
Wendy 🙂 -
April 18, 2011 at 1:14 pm
[QUOTE=edvaldo]Eu estou tentado a utilizar esta droga também,pois o percebo os avanços de forma clara.Se alguem souber algo que contradiga nos dias de hoje o tratamento com esta droga por favor me respondam[/QUOTE]
He is asking along the lines of- ‘I’m tempted to use this drug as well, because I see the progress clearly. If anyone knows anything that contradicts these days treatment with this drug please respond.’
So, if you know any reason(s) not to use the drug please reply.
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