First dose of oral drug...hurragh!

[Sparkysarah]

Just a quick update to say that I spent all day in hospital today and took the oral drug mid morning and then had regular hourly obs, pulse, blood pressure, ecg, temperature and not forgetting more bloods to add to the bruises that are already on both my arms from the frequent blood tests this week.

It was really nice to meet some other friendly faces who were also on the trial although we were all at different stages. We found out that we had all had glandular fever (although I only found this out from recent blood tests on the trial..but does not surprise me as I have had frequent swollen glands). Perhaps this was a coincidence or maybe not?????

So what did I experience?  After two hours I felt slightly light headed as if I had had an alcoholic drink or how I felt when I have taken Diazepan. It was not an unpleasant feeling and I did not feel faint but there was a definite change in how I was feeling. All my obs.  showed a steady change eg. blood pressure dropped to a level far from my norm (as it is normally high) pulse dropped and heart rate dropped.  This is supposed to be a common side effect of taking the drug for the first time.  So although they suggest you do not try and predict if you are on the placebo or not...I feel reasonably confident that I was on the drug as I do not think "the placebo effect" could have caused the physical changes I experienced..but maybe I will be proved wrong.

Anyhow I feel very happy that I am on the trial now and there is a long way to go, many more hospital appointments but in 6 months time I will be able to either continue the drug if I have been on it or start the drug if I have been on the placebo. I have now found out that they will tell me at some point in tte follow on trial if I was on the placebo or what strength drug I was on.

Long day, tired but relaxed and happy.

Sarah

PS I also met a lady in a different trial for Fingolimod (which will not be licensed over here in UK for a while yet until NICE approve it) She had been on her trial for 4 years and for the first two years she had been on a placebo, and then she had been on the actual drug. She has had no relapses in the last two years which was encouraging and no side effects and she said she had never felt better.

[essdipity]

The placebo effect is very real. Whatever helps is good.

I'm wondering if I have ever had this influence. I'm virtually impossible to hypnotize, for instance. Just not suggestible.

Sooner or later I may find this out.

ess

[Lulu54]

Thanks for the update, Sarah.  I'm sure you will keep us posted as the study progresses.

I smiled at your reference  to the placebo effect - I heard a short while back that MS patients are HIGHLY influenced and about a 60% placebo effectiveness rate.  That is a huge number - no wondert he Ampyra worked so fast for me!  :-)

be well, Lulu