FTY720

carolew · Post by **carolew** » Fri Dec 08, 2006 4:13 am

thanks Lyon and Flip, I sure hope I'm in the proper group for this drug. Carole

namedbos · Post by **namedbos** » Thu Dec 14, 2006 7:21 am

I am new to this forum and have also been considering Fingolimod trial. I saw that one of the side effects was on the heart rythmn and blood pressure for the folks already on trial have there been any changes in that that you have noticed compared to the situation before. I have not been on any medication yet but have to decide faily soon between : Lipitor, Fingolimod trial, LDN and Copaxone. I am not keen on injecting myself daily and been waiting for the oral medication.

carolew · Post by **carolew** » Thu Dec 14, 2006 5:35 pm

Hi Namedbos,
I have been on fingolimof for a week now with no problem. I had a tiny headache the first few days, probably tension from not knowing what I am taking ( i.e. the placebo or the drug)
. They observed me for 6 hrs and found no changes in my pulse nor blood pressure. But,... after three days my footdrop is better. Probably just a coincidence, probably just the normal course of this disease that waxes and wanes anyway.
I used to take lots of Lipitor, may take it again if this drug doesn't come through.
Good luck,
Carolew

carolew · Post by **carolew** » Sat Dec 23, 2006 12:06 pm

After 2 weeks on FTY720, still no problems but the spasticity is back. I had taken care of it with my lipitor so.... I restarted at only 20 mg. 3 days later, I am better. I don't care what they say about lipitor, it works for me.

Now, I must be careful and not take too much of lipitor so my liver enzymes will not increase.

My dilemma now is: do I tell the study people? we are suppose to , it is not on the list of drugs that we can't take with the study.... I just might.

I just have to say it is for my cholesterol cause they don't check it.

Anyway, I always thought that this disease probably needs more than one drug to control it. Like AIDS and epilepsy or rheumatoid arthritis etc.

Even if I am not on the placebo (that is always on my mind), this drug is suppose to decrease relapses drastically, they never said anything about spasticity or regaining any function. Therefore, I will combine for a while anyway.

Take care.

Carolew

Lyon · Post by **Lyon** » Sat Dec 23, 2006 3:25 pm

carolew · Post by **carolew** » Sun Dec 24, 2006 6:07 am

I tend to agree, maybe this won't matter, but maybe it would.... Carolew

gibbledygook · Post by **gibbledygook** » Tue Jan 02, 2007 9:00 pm

How about checking the side-effect profile of the trial drug. If there are side-effects which are noticeable such as with any of the interferons the trial won't be blind so the results will be screwed up anyway even if you don't take the lipitor!!!

gkalman · Post by **gkalman** » Sat Jan 06, 2007 9:04 pm

Hard question. But, it is a scientific study. I'd let them know. I.e., it probably should make their log.

carolew · Post by **carolew** » Sun Jan 07, 2007 8:29 am

I told them. Said it was for my spasticity. If I had not told them about spasticity problems before the study started, she said (the nurse) that she would have had to write it in as a side effect of the new drug. But, now the record is accurate.

carolew · Post by **carolew** » Sun Jan 21, 2007 10:00 am

Guess what I did? I opened a capsule of this pink pill I am taking. It had NO TASTE what so ever!!! So I am pretty sure that I am on placebo now!

If I get really desperate, I will just increase my lipitor and survive on it till the end of the study.

I am not happy about it but I had prepared myself for this possibility.

Or, it is a drug that taste nothing.... I doubt it. Anyway, life goes on.

Carolew

carolew · Post by **carolew** » Sun Jan 21, 2007 6:03 pm

Hum, my boyfriend just told me reminded me that there are poisons that you can't taste either.... what to think now...

CureOrBust · Post by **CureOrBust** » Sun Jan 21, 2007 11:04 pm

I wouldnt use the "taste test" as a total defining point. Even a placebo has to be something "sugar", "calcium carbonate" etc.

Although, I like yr sneakiness...

I'm suprised they dont have you swollowing the tablet in their presence. Do they let you take it home?

Melody · Post by **Melody** » Mon Jan 22, 2007 7:32 am

Maybe go to the drug store and check the ph and such with litmus paper or a pool tester kit. You can check how different things react to see if it is a neutral base. Where are the chemist in the group.

carolew · Post by **carolew** » Mon Jan 22, 2007 5:15 pm

The first dose was with them but now I take it at home.
I too think that this is not a sure thing i.e. no taste but.... I had to do this,
I was not getting much out of the pill and it had no side effect really.

Anyway, it doesn't change a thing. I will take this for 2 years and will see what the others do on this study. It was quite promising.

As for the litmus paper idea of Melody, I just might try it.,,, It would harm no one. Will keep you posted..

Good night and take care.
Carole

CureOrBust · Post by **CureOrBust** » Tue Jan 23, 2007 3:47 am

carolew wrote:As for the litmus paper idea of Melody, I just might try it.,,, It would harm no one. Will keep you posted..

Of course you would have to tell them you dropped one pill down the sink; so that you dont miss a dose.