NEW, husband has PPMS and is on the FTY 720 trail Phase III

[Astrid]

Hi,

My name is Astrid and I am from The Netherlands.
My husband (Rob) is diagnosed with PPMS in August 2006.
Since January 2009 het is on the new FTY 720 trial for PPMS.
We are 41 en 45 years old, no kids, own business witch I run on my own now.
Rob is getting worse everyday and we think he has side-effects from the FTY (thinking because in this trail you are not sure if you are on the drugs or not).
His EDSS score is 5.0, he doesn't feel his feet or legs, arm and hands but stil can walk about 200-300 meters.
He cann't coordinate his right hand anymore and his left hand is getting worse. He always has tintling (is that the right word?) sensations all over his body and his legs and arms feel very heavy and painfull.
He had to quit working 2 years ago and is very tired.
But... we still try to enjoy life and when it is possible we go to parties, out for dinner or to friends.

I'd like to know if there is anyone out there who is on this new trial for PPMS.
How are you feeling?

Thanks and I hope to hear from you!
We try to continue oure life

[Smilingface]

Hi Astrid and Rob,

I was diagnosed with PPMS Nov. 2006 and currently scheduled to enter the FTY 720 trial for PPMS in the second week of Nov. 2009. I have faced many delays in the last six months due to finalizing of the protocol and rules and regulations of the study site in Charlotte, NC. I know no one else in this trial and look forward to further contact with you.

Like Rob, I know I have progressed with my disease course since January. I'm not sure what my current EDSS score is but it was 3.5-4.0 last neuro. visit, 8 months ago. I am thankfully able to continue work as a self employed optometrist, take care of my 92 year-old Dad and watch over my 2 kids 11 and 17. I have primarily a walking disability and right hand and arm weakness. The fatigue can overwhelm me some days. But life does go on and I'm looking forward to joining Rob's trial Do you think he is on the drug or placebo? Do you know if his White blood cell count is lower or his heart rate is lower than baseline?

[Astrid]

Hi Smilingface,

Thanks for your reaction.
We are very greatfull Rob can join this study because there is no alternative drug.

We don't know about his White blood cel count, we never see any results from the bloodtests (is that the right word for that?)?
Because I am dutch not every medical term is familiar to me.
I am not sure if they would give that results anyway, so we cann't get a false idea about the fact of he is in our out (real drugs or placebo).
They also didn't mention if his heartrate dropped when he took the drugs for the first time.
We did ask for it, but that wasn't allowed to tell us.
And maybe that is the right thing anyway, so you don't jump into conclusions that can be totaly wrong.

We do think he is on it by the way.
Rob is feeling different since taking the pills, 10 month ago now, but offcourse it can be imagination.
There is so much happening in his body.

We asked the neurlogist en the ftp-team from the hospital many times if any one else experienced the same as he does and has the same "side-effects" as he does (the electric feelings/tintling in his arms and legs are incresing every day and is there the whole day). And he is getting worse in stead of stabelise.
But that isn't the case for so far (or not known).
We don't know how other participants are doing (4 inVUMC).
But I do know that they (the FTY-team) expect a lot of this drugs.
So we stay optimistic.

We are very happy with that FTY-team, we can call any hour of the day (if neccesary).

It must be very difficult for you some times to take care of your father and sons.
Do you have any help wiht the household (cleaning, cooking)?

Good to hear that you can still work!
Rob finds it very difficult not to.

I hope to hear from you!

Take care.

[Smilingface]

Cooking, cleaning and laundry is rough most days. Both my kids, especially the older helps. He likes to eat so he is learning to cook!

It makes sense that information has to be held from trial participants as well
as trial doctors. As long as the results are being monitored for safety I guess we have to accept that.

My PPMS is fairly stable and I am certain some months I have experienced little change. I am on no treatment of any kind. I still try to remember to take my Vit. D.

Has Rob had any gain in walking or hand strength?