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Posted: Thu Dec 14, 2006 9:21 am Post subject: Fingolimod
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.
Joined: Nov 06, 2004 Posts: 366 Location: Ottawa, Ont. Canada
Posted: Thu Dec 14, 2006 7:35 pm Post subject:
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
Joined: Nov 06, 2004 Posts: 366 Location: Ottawa, Ont. Canada
Posted: Sat Dec 23, 2006 2:06 pm Post subject:
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.
Joined: May 04, 2006 Posts: 3398 Location: Mid-Michigan
Posted: Sat Dec 23, 2006 5:25 pm Post subject:
carolew wrote:
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.
Hi Carole,
I think you really need to tell them Carole. In that kind of situation complete honesty is essential and withholding the truth is the same as lying. Not that what you're talking about is going to make a huge difference in the long run but to some degree the health and welfare of others might eventually be riding on these results.
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!!! _________________ 1st traceable symptoms Jan 01, last edss by doctor 6.5. Feeling better on ginkgo, salvia, capsaicin, curcumin, scutellaria. Interested in other vascular strengthening herbs; pycnogenol, butcher's broom, horsechestnut, centenella, hersperidin
Joined: Nov 06, 2004 Posts: 366 Location: Ottawa, Ont. Canada
Posted: Sun Jan 07, 2007 10:29 am Post subject:
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.
Joined: Nov 06, 2004 Posts: 366 Location: Ottawa, Ont. Canada
Posted: Sun Jan 21, 2007 12:00 pm Post subject:
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.
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. _________________ John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX:r. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
Joined: Nov 06, 2004 Posts: 366 Location: Ottawa, Ont. Canada
Posted: Mon Jan 22, 2007 7:15 pm Post subject:
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..
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I am not happy about it but I had prepared myself for this possibility.
r. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.