HELLO EVERYONE!! JUST GOT CAMPATH 2 MONTHS AGO!!!

A board to discuss the soon-to-be released drug Campath as a treatment for Multiple Sclerosis

HELLO EVERYONE!! JUST GOT CAMPATH 2 MONTHS AGO!!!

Postby leetz » Thu Oct 08, 2009 1:36 pm

I am so glad that i found this site...........I am two months in and feeling a lil crappy...so glad to read all of these post because it has helped me to understand how this medication works..I have been told by my doctor that it does take time, so now that I am able to get a feel for how much time I feel renewed! Clinging on to hope that I will have wonderful results like most of you...for a quick run down:
I walk with a cane(still do)
Aches/memory/bladder problems
Balance problems
Will update as things improve...I did not have bad side effects during infusion..just weakness/rash...walked good because of solumedrol(faded after two weeks).........now same ol ms symptoms(no new ones)....scared because I feel like this is my last resort medication wise.........really really really hope that this works....would love to walk again...stand for more than 2 minutes..cook...dance..maybe maybe maybe wear heals! :wink:
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Postby LR1234 » Thu Oct 08, 2009 2:13 pm

Welcome Leetz!
I hope Campath works for you. I have not been treated with it but am trying to see if they prescribe if "off label" what country are you in? Did you have it as part of a trial? how long have you had MS for?

Keep us updated for sure, fingers crossed you see some improvements


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Re: HELLO EVERYONE!! JUST GOT CAMPATH 2 MONTHS AGO!!!

Postby Lyon » Thu Oct 08, 2009 2:39 pm

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Last edited by Lyon on Sat Nov 26, 2011 9:52 am, edited 1 time in total.
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Postby queenie » Tue Oct 13, 2009 4:52 pm

Hello, guys.
I am nowalmost 6 months post first infusions.
I'm feeling pretty good!
So glad I took it.
I read that the study is closed now, so I feel really lucky that I was able to get it.
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Postby patientx » Tue Oct 13, 2009 5:37 pm

queenie wrote:I read that the study is closed now, so I feel really lucky that I was able to get it.


Yeah, rub it in. :)

Seriously, glad you are doing well. And even though you haven't received much response from your postings, please keep us updated (this goes for others, too). Reports on how people are doing months and years out are very valuable.
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Postby scorpion » Tue Oct 13, 2009 5:46 pm

I agree with patientx. Please keep us posted.
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Postby Grumpster » Mon Nov 23, 2009 10:38 am

Hello Leetz, another CAmpather here! Welcome to the site and to the Campath trial world. I hope that you have all of the good and none of the other. Keep us posted. As someone on Campath I am interested in how others are doing. You can read my tale on this Campath forum.

Grumpy
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POST CAMPATH 3 AND A LIL MORE MONTHS...

Postby leetz » Wed Dec 02, 2009 8:46 am

Hello everyone...Well not much to report...I am still doing the same..lil disapointed dunno what i really expected..miracle cure???? I am told by another campather to be patient...wait at least six months before i expect any significant change(s) so i am waiting...i am told it is very slow acting and gradual improvement...still waiting..no balance (walk worse than a 2 year old...at times)....pain galore...especially when steroid treatments wear off....what do you take for pain???aleve and advil just ain't cutting it anymore...and tramadol makes me way to jittery...

Can't win sometimes...i believe in god and i am already healed..these things take time i suppose!
Barely any muscles in my left leg...3 months of pt did nada..any suggestions????? Will update if i notice anything significant enough...

Oh to the person with the bladder issues (all of us...lol) try sanctura at 40mg's works for me...

Live..and laugh at yourself...it helps me through (especially when i fall) i crack up sometimes...have to or else you can find yourself in a very dark and lonely place...god bless us all!!!!!
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Postby freiguy » Thu Dec 03, 2009 8:34 pm

I am 16 months into campath and things are well. I wish you the best. Keep everyone updated on your progress.
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ok...

Postby leetz » Mon Dec 07, 2009 3:36 pm

Same ol song.........nothing to report...getting fitted for brace..so knee will bend when i attempt to walk...almost at 4 month mark post campath(round 1)....still being told to be patient this med is very very slow acting...waiting...hope everyone is well..

Can someone please tell me post campath how long was it before seeing results????? Anything??? Feeling back in pinkie toe---doesn't matter--some one????
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Postby Lyon » Mon Dec 07, 2009 3:57 pm

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Last edited by Lyon on Tue Nov 22, 2011 3:39 pm, edited 1 time in total.
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LYON

Postby leetz » Tue Dec 08, 2009 6:00 pm

To answer your question...when i initially got the infusion i had a wave of all of my old symptoms come back..(my doctor warned me this would happen)...the crash...according to other campathers that i have personally met, this happens...not worse right now...can stand a lil longer..waiting but was told by those that have gotten the medication that it takes time....up to 6 months to notice any results...hope this helps out!!!!
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Postby raven » Fri Dec 11, 2009 1:59 am

Hi Leetz

I'm an old Campath lab rat (nearly 4 years in) I don't visit this site as often as I should. I'm too busy holding down a stressful job which I am sure that without Campath I would not have been able to do. As others have said it is all about stopping progression, any improvement is a happy bonus. I certainly have improved but very slowly over time. Miracle cure it is not.

For me the biggest bonus is that I am no longer dreading the next attack, wondering which bits of my life are going to be taken from me next. MS has been relegated to an inconvenience to be borne.

If I should have a relapse then I will deal with that when it happens.

Actually the real reason for my reply was your question about Neuropathic pain. Have you tried Gabapentin? It has certainly helped me.

Best Wishes and a Happy Christmas to all MS'ers

Robin
Do not go gentle into that good night. Rage, rage against the dying of the light.
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ROBIN AND OTHERS...

Postby leetz » Sat Dec 19, 2009 9:37 pm

THANK YOU FOR YOUR RESPONSE...I HAVE MY DOUBTFUL DAYS AND AM HOPING FOR THE BEST....I AM NOW FOUR MONTHS AND 5 DAYS IN....STILL BEING AS PATIENT AS POSSIBLE...FEELING TRAPPED IN MY OWN BODY...SUCKS, BUT I KNOW YOU GUYS/FEMALES CAN RELATE..KEEPING MY FAITH BECAUSE I KNOW GOD IS WITH ALL OF US!!!BLESSINGS!!!

LEETZ
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Hello everyone!! Just got campth 2 months ago!!!

Postby NHE » Sat Dec 19, 2009 11:28 pm

Hi Leetz,
It would be great if you could not type in all caps. In written communication, typing in all caps is the equivalent of shouting. It is also more difficult to read than standard sentence case. Thank you.

NHE
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