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I had one high dose of Campath 2-3 years ago. I got ITP and could not have another dose. I have not had any major relapses since the treatment. However, I have had and am currently experiencing pseudo relapses where I have worsening symptoms and periods of increased disability, which come and go frequently. I am not sure if I should even report these to my neuro. It is hard to tell. HAs anyone experienced similar after Campath? I wish i could get another dose and not have the ITP reaction. My GP and hemotologist both say NO WAY it could kill you from untreatable
ITP. Oh well. I feel that the beneficial effects of the CAmpath are now gone and I am starting to slip back into the progression.

I wonder what the lemtrada protocol will be for checking ITP. In the study, which I've been in 4 years now, it's a monthly blood draw. I'm over it ! Def check with your neuro @ pseudo relapses. At one point, discussion was that it be a 5year dosing, but I got 3, 3 years in a row, the last one being 17 months ago. I guess I'm stable, don't use my scooter much; that says something for its corrective properties. Sent you a pm Grumpster, talk to you soon.

My husband and I were wondering how they'll address protocol too. Full patient compliance is a very difficult thing to achieve. At my site a couple of people have been kicked out of the study because they stopped coming in. Personally, I'm getting sick of the monthly draws, and really hated the change in the phone surveys. Yet, I can't imagine NOT doing the draws or surveys to stay atop risk assessment of potential problems like ITP.

I've had 2 years of infusions, and am 6 months into year 3. So far no relapses, and I haven't done a third dosing course...yet.

Grumpster, I'd report that to the neuro. When you say pseudo relapse what does that mean, something just occurs for a few hours? I'm in Arizona, hot as you-know-what in summer. In the past, I would have minor symptoms like fuzzy eyesight, exhaustion, some uncoordinated movement, but in general it was brief, occurred outdoors at the peak of the hot day, or was later in evening after a long day. This summer, it's been a little different, and these "minor occurrences" are worse. Nothing serious, and again, they're brief. I mentioned the happenings to my neuro and study site, and while they may be new symptoms, they haven't occurred over a long enough time span, so they're never official "episodes" or "relapses". They think it's just my nemesis, the summertime heat.

It seems like my situation is worsening existing symptoms rather that full blown relapse. Sometimes if it tough to really tell the difference. My prior relapses have been really bad with ON and hard time getting up, etc. Now mine has mostly to do with stiff right leg, a bit of foot drop, and balance problems. I have had all of these in some magnitude previously but they seem worse now. I think it is likely just the usual course of MS and worsening over time. I have been diagnosed since 2002 so time is not my friend. I do not think a typical steroid treatment for a relapse will do me much good.

I may go talk to him. It seems to me that the neuro approach is just managed decline and there is nothing much they can do unless you need rescue steroids for a massive relapse.

Hello Grumpster, did you not try antibiotics once before you had the Campath infusion? Last year, the Australian science programme, Catalyst, made a short segment about antibiotics and MS:

http://www.abc.net.au/catalyst/stories/3572695.htm

It has caused something of a neurological outcry in Australia. You might be better going back to antibiotics rather than Campath or whatever it is being renamed. I couldn't take Campath because my disease had become too progressive and I am glad that I couldn't because I have not had any sort of MS relapse since 2003, when I started abx.

Sarah

Gumpster,

From what you have written, I cannot see why you would call it a pseudo relapse, as opposed to mini or very mild relapses?

Anecdote

Anecdote wrote:It has caused something of a neurological outcry in Australia.

Admittedly, I haven't seen a neuro since the programmed aired, but what do you exactly mean by this? I can see and understand neuros loosing their patients because more of their patient's have now been made aware of possible treatments outside their own current offerings.

I probably was ha ing a mild relaps but who knows. I think it is just worsening of symptoms, a typical ms progression. I was on abx ffor a year or so but did not feel it benefited me so i stopped. Now i just take copaxo.e and hope for the best. I havee lost faith in the drs ability to help. I do not even go for regular MRIs anymoo re. What is the point? They never do anything different based on one

The abx made me feel prety aweful

Grumpster wrote:I was on abx for a year or so but did not feel it benefited me so i stopped.

So did I.