I can run!

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

I can run!

Postby raven » Fri Jul 18, 2008 9:07 am

It may seem like a funny thing to get excited about but I haven't been able to run since 2002-3. At times a slow shuffle was the best I could manage.

Recovering enough to be able to run again always seemed to be out of reach.

Today I got caught in a sharp, heavy rain shower. Without thinking about it I just took off for cover. It was only when I was out of the rain that I realised what I had done.

Okay, I'm not gonna be worrying Linford Christie any time soon and my steps were certainly lumpy but for me it is a huge milestone.

The fact that I am still slowly improving 2 years after my final treatment gives me great hope for the future.

I really hope that all the new Campath patients who are posting now get the same results that I have had.

Robin
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Postby bromley » Fri Jul 18, 2008 10:32 am

Robin,

Good news.

We (the British) may well need you as a reserve for the UK Olympic track and field squad.

I'll dig out my running shoes and we could become the new Coe and Ovett.


Ian
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Re: I can run!

Postby CureOrBust » Fri Jul 18, 2008 8:15 pm

raven wrote:It may seem like a funny thing to get excited about but I haven't been able to run since 2002-3. At times a slow shuffle was the best I could manage.
You have no idea how NOT funny this sounds. I am not a lover of running by any stretch of the term, however, it is something I truly miss, and it highlights my disability to myself in a big way. I can truly understand your excitement! :) :D :lol:
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Postby raven » Sat Jul 19, 2008 3:55 am

I am not a lover of running by any stretch of the term


hehe me neither.

I am however going to exercise this new found ability as much as possible. Later today when I take the dog for a walk I'll try a bit of a jog (We walk through a secluded leafy track. I'm not quite ready for public performance yet - too much risk of going *** upward)

Most of my deficits were spinal cord based (L'Hermettes, walking, bladder, lower body skin sensitivity etc.) As there is almost no redundancy in the spinal cord I assumed that I was stuck with my residual symptoms for life. This has now been called into question.

You never know, I my end up learning to like running for the sake of it :)

Robin
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Postby CureOrBust » Sat Jul 19, 2008 5:01 am

raven wrote:Later today when I take the dog for a walk I'll try a bit of a jog
see, now, ya just showing off. Do I sound jealous? all the best to you.
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Postby Lyon » Sat Jul 19, 2008 7:47 am

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Postby robbie » Sat Jul 19, 2008 8:46 am

glad your doing so well Robin, it must be amazing to be in a position to beat this shit, good news so many will be inspired.
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Postby raven » Sat Jul 19, 2008 2:24 pm

Thanks Robbie.

I must admit that I was in two minds about posting at all.

I know full well that there are many who read this board who are unable to participate in something like the Campath trial. There are also many who's disability is far worse than anything that I experienced. I didn't, and don't want those people to think that I am crowing "I've beaten MS" when they still suffer. Whether I have truly beaten MS is something that will take many years to determine, however I am enjoying the respite that I have been given.

On the other hand I also believe that Campath is a very important advance in the treatment of MS. By making public my experience so far, perhaps it will give those who are suffering this awful disease some hope that treatments are continuing to be developed that stand a real chance of if not beating, at least holding at bay the relentless progression.

It was a close call but I decided upon the latter.


p.s. The jog was great, definitely a bit 'lumpy' but at least I didn't eat turf :)
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Postby robbie » Sat Jul 19, 2008 3:41 pm

thanks raven, there are lots of people i'm sure that want to know about the treatment your on and how your doing and i too like reading and hearing about you. you were here when i started and it's just good.i hope you can run like the wind some day. rob
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Postby CureOrBust » Sat Jul 19, 2008 7:21 pm

raven wrote:I must admit that I was in two minds about posting at all.
....
On the other hand I also believe that Campath is a very important advance in the treatment of MS. By making public my experience so far, perhaps it will give those who are suffering this awful disease some hope that treatments are continuing to be developed that stand a real chance of if not beating, at least holding at bay the relentless progression.

It was a close call but I decided upon the latter.
I am definitely glad you decided to post this. Please, keep doing it. I love having someone to be jealous of.

There is Campath and HyCy that are fairly early in their usage, but people are singing their praises now. Its important to hear from people who have had the treatment many years ago, to understand the long term effects/results. Please keep posting.

Do you (or anyone) know if there has been a long term follow up of patients that have done Campath? What is the longest a patient has been (i.e. after the treatment) on this? is there any papers on the long term results using their current procedures?

For example, Revimmune (i.e. HyCy) have now added Copaxone to the regimen, but I haven't read any published articles showing it has solved the longer term problem they intend to fix.
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Postby raven » Sun Jul 20, 2008 6:39 am

Do you (or anyone) know if there has been a long term follow up of patients that have done Campath? What is the longest a patient has been (i.e. after the treatment) on this? is there any papers on the long term results using their current procedures?


I don't have any real answers for this. I know that I will be followed for as long as I remain in the trial. How long that will be after Campath is approved I don't know. As far as the longest treatment goes there was Paul who posted here under the nick whitepjs he was treated I think 2 years before me. I would guess that the earliest treatments go back about 6 years. I don't know of any papers but then I haven't been the avid reader of PubMed that I was.

Oh, and Lyon I would volunteer for the brain autopsy but my wife pointed out "what brain?"
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Postby Lyon » Sun Jul 20, 2008 6:50 am

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Postby raven » Tue Jul 22, 2008 7:51 am

Ahh yes, David rather than Paul, must've got a few wires crossed there.

Cure - As I was in Cambridge talking to the man today I thought I'd pose some of your questions. The first patients were treated in 1991 however it was first tried on those who were in the late stages of MS where it was found to be largely ineffective. Treatment of RRMS patients goes back 9 years. Those patients are still being followed. So far 700 patients have been treated, at this stage there are no indications that the treatment is a temporary respite rather than a lasting reprieve.

On the downside one patient has developed lymphoma. This is a known risk with Campath. The patient was treated 3 times with the last treatment 4 years ago. In my opinion the benefits I have had compared to a 1:700 risk were well worth it.

Robin
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Postby freiguy » Tue Jul 22, 2008 8:11 am

One would have to wonder if it was really caused by the campath directly. Who knows?? Raven, when you say 700 patients does this mean the patients that were treated exclusively in England? Do you have any information regarding how many patients got a third round of campath?
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Postby raven » Tue Jul 22, 2008 8:17 am

Hiya,

Of course it's impossible to say that Campath was responsible but the patient had no 'risk factors' what they would be for lymphoma I don't know but it is being assumed that Campath was responsible.

I believe that it's 700 patients worldwide but I could be completely wrong (I frequently am!). I don't know how many patients got a third dose. I believe (see above caveat) that initially 3 doses was the norm but was changed to 2 with a third only being administered if found to be necessary.

Robin
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