This Is MS Multiple Sclerosis Community: Knowledge & Support

I went for my 3 month checkup today. Unfortunately I didn't get a neurological assesment but it would only have confirmed what I know. Since treatment my condition has definitely improved. Prior to treatment I was assesed as EDSS 4.0, in my own judgement I have improved by at least 1 EDSS point since treatment, probably more. Hopefully these improvements will continue.

A sobering note to the proceedings was that one patient on the CAMMS223 trial has died from a condition called ITP (idiopathic thrombocytopenic purpura) This is an autoimmune condition that causes the immune system to attack platelets. Whilst it cannot be proven that Campath was responsible for the development of this condition, given the fact that related autoimmune conditions such as Graves disease are known to be possible side effects it seems likely. Had the symptoms been recognised and reported to the trial doctors ITP is a treatable condition and this person need not have died. It is however a reminder to all of us who participate in clinical trials that nothing is guaranteed.

The unfortunte fatality was on the American side of the trial, Rat, I really hope you're ok...

Despite this news, given my improvements and the fact that I have not had even a whisper of a relapse since treatment I still firmly believe that I have done the right thing.

Robin

_________________
Do not go gentle into that good night. Rage, rage against the dying of the light.

Robin,

Thanks for the update. Sad news about one of the participants in the trial -I think Arron referred to you as courageous in an earlier post - he was right.

Everytime more effective treatments appear in trial or onto the market (eg Tysabri), this disease has a nasty habit of showing us that it won't go down without a fight.

Best of luck and hope you see continuing improvements. Hopefully the future, for all of us, will be as Howard Weiner wrote in the ms article I posted recently on this site.

'I believe that in future, MS patients will receive
strong anti-inflammatory therapy right from the start, followed by the
addition of degeneration-blockers. MS could be turned from a
relentlessly progressive disease that causes permanent pain and
disability into a relatively mild condition that can be kept in check
with the right medicines'.

Ian

Sad news about the death of one of the CAMMS223 participants. I am a bit troubled that his or her illness was not recognized. Thrombocytopenia is a recognized danger with Campath!

Let us hope this is an isolated case; Campath and other monoclonal antibodies strike me as being the best hope for near future treatments for MS. I'm also following the LDN and antibiotics stuff, of course, but there's a reason we make a distinction between anecdotal evidence and scientific evidence.

Actually, I read about an approach similar to Campath except they somehow kill off only the T-Cells which are attacking the nervous system instead of ALL the T-Cells as with Campath. Perhaps that approach would avoid the autoimmune problems we are seeing with Campath. I wish I could find the info on that approach again...

Good luck with your treatment. I wish I could get a peak at the CAMMS223 data, I'm in the middle of making treatment decisions!

Justinian,

Nice to meet you.

The other treatment you refer to is probably Tovaxin. There are quite a few posts on this in the Drugs Pipeline section.

Bromley.

Hi Justinian,

I wouldn't mind a look at the 223 data as well, although from talking the the trial doctors it's pretty good. Apparently the trial participants platelet count was normal when he went for a 3 month check-up. Shortly after he developed the symptoms of bruising easily and bleeding gums but did not report them. He died from heamorrage some time later.

I'm also following the other treatment options (Whilst I may have made my decision and committed myself I'm still interested in following up on new treatments). The specific T cell option looks hopeful provided MS is a purely T cell mediated disease. I did read about some success for a monoclonal that targeted purely B cells which would point the finger at antibody mediation in at least some cases. This would also explain progression despite a lack of gross inflammation as antibodies can activate the microglia within the CNS. The much talked about findings of Prineas and Barnett noted extensive microglial activation in plaques that did not show gross inflammation.

But as usual it's all speculation until someone nails this sucker once and for all.

Let us know what decision you come to.

Robin

_________________
Do not go gentle into that good night. Rage, rage against the dying of the light.

Robin,

You mentioned anti-bodies and B cells so I attach a paper which I posted elsewhere.

Hope you are continuing to see improvements.

Hope that we hear from Lab Rat soon.

Bromley

http://www.cerebrospinalfluidresearch.com/content/2/1/3

I've read that Grave's disease is a concern. What's the deal with that that one? Is it treatable?

I'm sure this has been explained, but no time to research this AM. Thanks.

Grave's is treatable, eg. could take thyroid replacement medication, but perhaps more importantly, my understanding is that Grave's hasn't been an issue with the trials in the U.S. There's been some speculation that it may have had something to do the manufacturing of the Campath that was used in the previous studies.

- Arcee

Lab Rat who is on the current Campath trial in the US wrote:



Bromley