new to the forum but had first set of infusions in april

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

new to the forum but had first set of infusions in april

Postby charlie1 » Fri Jun 26, 2009 7:02 pm

just wondering how people felt two months post infusion, still feel the same symptoms havent decreased, just curious maybe im expecting too much too soon. dx 07/2007 thank you..
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Postby queenie » Sat Jun 27, 2009 10:25 pm

Hi, Charlie! I am pretty new to this forum, also. So far I haven't had ANY replies to any of my posts...Oh, well...
I also had the infusions in April - the last week, and don't feel any different, either.
I didn't expect too much, though. I didn't really know WHAT to expect.
Are your symptoms severe? I work full time, have a lot of fatigue, and various aches and pains. I think my walking is a little worse, actually; seems like the foot drop is worse, causing me to trip around on the job alot. I guess if I have less long term progression, and no new lesions, I'll know it is working. I don't even dare to hope for improvement of lesions!
I, too have been looking for some anecdotal info on how PWMS are feeling post infusions, and haven't really found anything here. Maybe we can support each other!
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Postby Lyon » Sun Jun 28, 2009 4:36 am

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Postby raven » Sun Jun 28, 2009 10:24 am

but it "seems" that most people who have utilized Campath and Revimmune have gone on with life and no longer hang around here much.


This is very true. I have to admit that I haven't visited or posted on this site for many months. I am as you say getting on with life, it was only a conversation I had with a colleague on friday who had just learned that I had MS that prompted me to visit the site again.

I do feel guilty, I owe an awful lot to this site and the encouragement and support that I got from other members [ How are you Bromley? and thanks for the anniversary card! :) ].

If anyone wants to know anything about my experience, results etc. please post or PM me, I will answer although it may take a few days as I'm pretty busy at the moment [ Being able to hold down a stressful job and the recent look of amazement on a workmates face upon learning that I have MS is testament enough to Campeth ]

As to the specific question of when you can expect results; the only thing I can say is that halting the progression and relapses is a huge result in itself. If improvements do occur they will happen gradually. One day you may catch yourself doing something that previously would have been impossible, yet the change was so gradual that you didn't notice it sneaking up on you.

My only advice would be don't wait for improvements, take what you have and get on with life as normally as possible.

Best wishes

Robin
Do not go gentle into that good night. Rage, rage against the dying of the light.
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Postby Lyon » Sun Jun 28, 2009 10:42 am

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Postby charlie1 » Sun Jun 28, 2009 11:54 am

thanks for the advice its just hard with this disease to adjust and I think a problem also is all of the info on the internet of campath being some kind of wonder drug. and since ive only really started having symptoms (a bunch.) over the last two years, I guess im still scared, even though i fool myself that I understand what i have and how its progression is unforseeable, it is easy to start hoping that something would start helping the symptoms, I should be happy if it does at least maintain my current level, however it may be a struggle I know, it could and may still get worse. I know I just have to take it slow and not put too much hope on campath because I know it is not a cure. and I thank everyone for the replies thank you for your time and advice. queenie I will try to keep in touch with yes we can give each other some support, I know it is scary starting a new tx, was on copaxone for a little over a year and a half.
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Postby queenie » Sun Jun 28, 2009 4:54 pm

Charlie, I was on copaxone for 4 years, and was very happy with it! Didn't like shooting up every night, and it burned, but it felt like an active way to fight off the beast. In that sense, campath seems passive. But after 4 years, and about 1500 shots, it wasn't hard to give up!
Are you working? How much disability, if any, do you have?
How old are you? Do you have children, and how old are they?
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Postby charlie1 » Sun Jun 28, 2009 8:17 pm

queenie, my main symptoms right now that really bother me are fatigue (sleepiness), back pain and leg weakness but am still able to ride a bicycle at the gym at a decent resistance level 5 days a week, even though i pay for it during the week. im 35yo still work 64hours every two weeks. i dont really feel like the copaxone was trully holding my ms at bay, and i dont miss the daily burning shots much. even though it did feel like giving my shot daily was more like a security blanket. was hard mentally to stop those. also have other minor issues im sure a lot of RR Ms people have like bladder, numbness, and dizziness but has decreased some used to be terrible.. MS sure does work pretty fast two years and i have these goodies. but i know it could be worse. I work as a nurse and see alot, so i count my blessings too.. thanks for the reply oh yes i have two children and a very supporting wife thank god... well theres a little info on me..
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Postby queenie » Mon Jun 29, 2009 6:02 pm

Charlie, I am a nurse, also!
What area do you work in? I am lucky to have gotten my masters early, and gotten into leadership/admin, because I could never do the bedside care (oncology) that I loved, now.
But I am a nursing director of med/surg nursing at a local community hospital, where I get to make and enforce policy and procedure, and I really, really love it!
I hope that the campath is keeping the beast at bay. I think that everybody has their shit to deal with, and as long as I can get out of bed and move around, I'll count myself among the fortunate!
I've had my ups and downs, and many fits of crying spells, don't get me wrong. I just have to get on with life.
Let's stay in touch. It sounds like we have a lot in common.
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Postby freiguy » Tue Jun 30, 2009 7:34 pm

I am getting ready for my second round of infusions beginning July 22. I have to agree with Robin as far as getting on with things in life. Personally there was a learning curve with MS. By this I mean that I used to go all out every day with everything I was tasked with. The last year I have tried to take a step back and realize that I cannot accomplish everything I was able to a couple years ago. I am sure some of this is just due to getting a little older but mainly from MS. I can still do the 24 hour nonstop workday but I definitely pay for it for the next several days. If I push myself too hard I notice the dizziness/vertigo symptoms coming on. If I get the right amount of rest I can function pretty well. After the campath infusion there is no point when the "switch is flipped" and suddenly you feel great and no longer experience any symptoms.
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Postby charlie1 » Tue Jun 30, 2009 8:19 pm

thank you queenie i will keep in touch for sure. get so busy with work and taking the kids to there evening activities... freiguy thanks for the reply the info from people that have actually recieved campath is great. it is hard to meet people with ms, you all know how it is not a very common disease thats why when someone finds out i have it and ask what it is i tell them to google it, and tell them it'll be some good reading.. im not being rude to them but it is a difficult disease to explain.. so thank god for these kind of forum's, i cant imagine going thru this disease without the kind of access we have to communicate and learn thru the internet. even though i know some of the info is not always correct. i am learning to live with my disease and am trying to adjust my life accordingly. thank you so much for the reply. oh yeah i have a question i have had two routine blood draws and have not recieved any results on them should i ask the site for them? if anyone has any info...
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Postby freiguy » Wed Jul 01, 2009 3:57 am

Charlie1,
My doctor only treats MS patients and she run several different clinicla trials. She has a dedicated nurse for each trial to assist the patients. I have a great relationship with my trial nurse and keep in touch with her on a regular basis. She calls me the day after my blood draws and lets me know the results. I keep a journal of all of this to see where I am each month and compare it to my baseline screening levels. My whit count dropped so low right after the infusions that I was going in for weekly blood testing to monitor it for the first two months. I don't think that you have anything to worry about if you don't hear about the results. The trial is monitored closely. They will let you know if something strange pops up in your test results. Let me know if you have anymore questions. I have been checking in on the forum since my second round of campath is rapidly approaching.

Fred
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Postby queenie » Wed Jul 01, 2009 3:56 pm

Hi, Charlie and freiguy!
Does it ever annoy you when "normal" people start telling you that they have the same symptom(s) as you, and that it is probably your age? Even my research nurse, when I was complaining about not sleeping well, said, "hmm; ms or our age?".
And this is somebody who should know better! Do they think it will make us feel better to hear that THEY have problems, too? Or do they just think we are all big babies?
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Postby freiguy » Wed Jul 01, 2009 7:38 pm

queenie,
I am sure everyone has their own problems in life to deal with. The problem I find is that most people really have no idea what MS is. I mean they have heard the term before but they do not understand what the disease is. I have to admit that when I first got the diagnosis I was completely unaware of what MS was or what to expect. This forum has really educated me and I am definitely able to deal with things better now than last year. I can't relate to your situation as far as my doctor and trial nurse are concerned. They are unbelievably supportive and listen to every concern I have no matter how trivial. It is sad to hear that you get treated that way from your trial site. I hope things get better in that regard.
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Postby queenie » Fri Jul 03, 2009 12:56 am

My doc is terrific; I e-mail him, and he gets back to me in under 24 hours - usually at 5am the next morning
1 My research nurse is okay, also.
And I am the FIRST one to say that everyone has their own shit to deal with. It's just that, if you ask me about my symptoms, and then brush them off as unrelated, then don't even ask me!
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