annoying!

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annoying!

Postby carolew » Mon Jan 12, 2009 4:06 pm

I was on the study for FTY720 for two years. The whole time, my lymphocytes were low.. I knew since I got a copy of my blood work in 2007 and 2008.
Now, I am in the extension phase and my neuro gets these SAME results, not lower, and they tell me that if they do not increase (my lymphocytes that is ) they will D/C THE DRUG....!!! I have been like this for two long years!! No one in Belgium complained before... 'oh, they have increased their thresholds , the nurse says...??? I was a bit taken aback...
it was more simple when I was on the real study I suppose :roll:
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Postby CureOrBust » Mon Jan 12, 2009 5:59 pm

That does sound a little dubious with their timing on the change of thresholds.

What I do not understand is that I thought, FTY720 was suppose to lower circulating lymphocytes?
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Postby carolew » Tue Jan 13, 2009 5:09 am

It does! too well for me it seems! I know that one can get a severe viral infection when the lymphocytes are down but the way they are changing their mind is a bit disturbing to me .
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Postby carolew » Tue Jan 13, 2009 5:10 am

oops, double post! Must be the low lymphocytes...
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Postby CureOrBust » Tue Jan 13, 2009 5:46 am

carolew wrote:It does! too well for me it seems!
so they just turn you off? don't even consider a lower dose with monitoring? I guess it is trial substance at this stage.

surely they have some idea how long it affects your system? restart it soon after? options?
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Postby carolew » Tue Jan 13, 2009 3:36 pm

yes, yes,, no one knows the dose I am on now.... .5 or 1.25.
the plan they gave me is that if I am still too low, I will need to stop the meds, repeat the blood work until it is better and the whole things starts all over again... what a deal!!!
I have a suggestion... I take 5 doses a week of what ever I am taking now... I could even do this behind their back but I will not take the risk,,, :?
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Postby lionheart » Wed Jan 14, 2009 8:50 am

Hi! Were you feeling well while on the oral drug? I mean, can you compare it to sth - previous/different treatment or just previous health condition. Can you say that this drug has worked out for you?
Sorry, if these questions have been already asked.
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Postby carolew » Wed Jan 14, 2009 5:53 pm

Dear Lionheart,

I have always said that it is not a miracle cure... I am worse then when I started the initial study in dec. 2006.

I have felt well the whole time and was not scared even though I knew my lymphocytes were lower. Now, I am more scared since the nurse and the neurologist are all nervous about it.

No one will ever know how I would have been without this treatment... but I didn't want to try anything else. Carole
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Postby lionheart » Thu Jan 15, 2009 12:36 am

And before starting the drug were you on any other medications?

As for what you say about getting apprehensive, because the doctors are getting nervous - isn't it all in our mind? I mean how susceptible we are to external influences which get on our minds and make us feel one way or the other. I say this from experience - when, esp at the beginning, I was feeling bad and down and didn't see any bright future before me, when at these moments I had to go to my neuro, who's very positive and supporting (she has other drawbacks, as being very busy and not paying enough attn), I walked out of her office a new person! It depends on you to a great extent, how you'll choose to feel and what you'll choose to think. Try to make the doctors more specific, to sooth your anxiety. Find one from the team who would :)

You said you were getting worse - worse how?
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Postby carolew » Thu Jan 15, 2009 10:18 am

hi Lionheart,
I totally agree with you. I am normally a very positive person.
They made me more nervous because of all the precautions they were asking me to take.
I knew the whole time and lived with it no problem. Now I tell myself not to push my luck.
Before the study, my left leg was weak and my walking limited. I was EDSS 3, now I am a 4 according to them because I use the cane to do their test walking. I know I am worse than 2 years ago but I manage. I still work. The moral is good, and the neuro just basically said she had nothing else to offer??? I do not have attacks anymore (last one in 2002). I am probably secondary progressive now. I am hoping the FTY720 will keep me at least stable and functional. Take Care , Carole
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Postby carolew » Thu Jan 15, 2009 10:21 am

I forgot, no, I was not on any treatment before except Lipitor , and I am still on it... I think it helps me more than the drug.... :?
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Postby lionheart » Thu Jan 15, 2009 12:38 pm

Interesting why they didn't put you on any interferon treatment.

Just now I read about a man who used to be almost paralyzed and managed to get back to normal and is still 28y later, by the Silva method, meditating and visualizing that his legs were moving, also by eating only vegetables and fruit, walking in the mountains, etc. etc.
Don't know how to address such miraculous cures...perhaps there is certain truth in all this, but somehow I don't feel motivated enough to starve or do things much out of the ordinary to no certain result and without medical advise. Related to my previous post: I need someone - a doctor - to tell me that this is if not a treatment, recommendable at least. On the contrary, my neuro says I should live my normal life, and abstain only from animal greasy stuff. Evth else is ok to have, even a glass of wine.She says there is no scientific proof that MS is influenced by the way you eat.
Where is the truth?
How about doctors in your country: what's their advise re food?
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Postby Cojack » Thu Jan 15, 2009 5:53 pm

Lionheart,

check out roy swank....he did a study that covers many years and MS'ers...just google it.

Jack
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Postby lionheart » Thu Jan 15, 2009 11:48 pm

I am well acquianted with Swank's diet, I meant neurologists, on an avarage basis. Your neuro for example. Or Carole's neuro, or any other.

Not that having healthy eating habits isn't good for anybody, ms or not.
For me personally it is very difficult to cut off almost evth and to watch every bite I take, it is 1st, annoying and makes me feel bad(neuro says it's more harmful for ms to torture my psyche with what to eat and not), and 2nd it's very time consuming to figure out what to eat, to prepare it (moreover I don't live alone). In the beginning I tried it and I was one very sad and depressed person. BUT if it was generally accepted by doctors, even though not scientifically proved, I would keep the diet.

Problem with ms is that if you are improving or in remission being on the diet, you can never tell whether it is the diet or just ms, as it is unpredictable and nobody can predict its progression with certainty.
Don't you know people who got worse although keeping the diet?

I was thinking, if virtually starving was the miracle , then all ms-ers would be doing that and be healthy! No ms problem, no nth. And Swank would have proven it scientifically and won the Nobel prize.

Don't get me wrong, I am absolutely for healthy eating habits, but not to be allowed to have my favourite pizza for instance is just killing me :)
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Postby carolew » Fri Jan 16, 2009 5:12 am

I eat whatever I want. My neuro never said anything about my diet. I do eat lean already. I try to function with the abilities that I still have and concentrate on what I CAN do and not the opposite. I drink 2 glasses of wine per day, good for stress reduction. I love chocolate and eat a bite of it everyday and one piece of pizza almost every Friday. I doubt that diet will change my future.
I never used any treatment before because of me... I didn't want those side effects and wanted to be able to work. My choice . I have had this for 30 years and I don't regret not pricking myself all those years....
take care, Carole
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