NP001 - start tomorrow

[kelleyri]

Forgive me if this is a repetitive post ... I go tomorrow for my first visit ... I'll be a new participant in this trial.

Can anyone offer me any insights as to what to expect - either during the treatment or after? I'm curious -- and slightly nervous (though hoping for some positives over time).

Thanks.

 

[george123]

Although I'm sure the experience varies some from trial site to trial site and from person to person as to side effects.

For me the toughest part was the first week which seemed pretty lengthy, 5 days of infusions and then you have to have your vitals checked again about 4 hrs after each infusion before you are free to go, makes for a fairly long day.

The nurses at my site were wonderful fun to visit with and they really took great care of any of our needs no matter how small. I think most trial participants would agree after the first week subsequent rounds of infusions are even easier as you are only at the clinic for 3 days vs 5 days and your vitals are checked 2hrs post infusion instead of 4hrs so it makes for a shorter day.

Most people that get the drug seem to experience some tiredness or lethargy which may persist even into the following week.

In some rare cases I have heard of people with the reaction of lowered red blood cell count or rarely some irritation at the infusion site. Its a good idea to drink plenty of water so they can find your veins for the needle.

Any more specific questions just ask - overall I can't imagine a clinical trial being much easier and pleasant than this one.

 

[TedH5]

kelleyri - good luck, I have heard a lot of positive things about the potential for this trial.

 

[kelleyri]

Do I understand you correctly that I should feel some lethargy/tiredness after my first visit/week of visits if I'm receiving the "real thing" (vs. the placebo). Or does this take time?

Any clues I might look for to know/suspect whether I'm getting the drug or the placebo?

Thanks.

 

[joni51]

Good luck honey!

 

[susanf]

Good luck Kelly. I heard great things about NP. My clinic in Tampa was trying to get a trial since it's been so successful. Keep us in the loop.

 

[notgivnup]

Kelly I will be keeping you in my thoughts and prayers.

 

[AKjo]

Hi Kelly.

It is interesting that they are starting you on a Tuesday for the five day treatment cycle. Does that mean you are going on Saturday?

Good luck tomorrow!

 

[george123]

Kelly, although the trial is double blind and we are not 100% certain who is getting the drug and who is getting placebo, most folks that eventually report what they perceive as improvements note varying degrees of lethargy or tiredness pretty much starting after the first infusion.

I didn't notice what was being called lethargy but I did find myself going back to where I was staying after the infusion and taking a nap for several hours, I interpreted this as just extra tiredness related to travel & participating in the trial. After several rounds of infusions I came to believe this tiredness was what others were calling lethargy.

There are other side effects possible if you are getting the drug including headache, runny nose, diarrhea, low energy, anemia and abnormalities in tests that check your liver function. These and others should be listed in the informed consent you signed and the trial personnel should have given you a copy for your own use.

Obviously having one of these side effects is no guarantee you are getting the drug but could be an indicator. Even if you don't notice side effects at the outset you might still be getting the drug.