What to Do...

[Hisoka]

Hi, everyone.. i am a new user here.. it was a total coincidence that i saw this forum, and i really liked.

I have MS for like more than 4 years. I am living up with it normally, but am going through the longest relapse in those 4 years! This relapse started on June, i had some numbness in my left leg, which leads to lack of control of course. Believe it or not i am still having that relapse till now! both of my legd are resty, weak and have numbness. Plus that i feel like a burning pain in my left leg.

My right hand was also weak and resy and i was unable to control it, but now it came back to normal, however the two last fingers in my left hand (Ring and Little) have numbness and i almost can feel nothing with them which disable me to control them. I really hate how all this is happening, because i never had a relapse/attack that took that long. I am taking Betaferon injections, but it doesn't seem to work that well!

What can i do? without talking those 1 gram injection for 5 days in te hospital?
Another question, is that new medicine Fingolimod (FTY720) any good?


Thanks alot for listening guys.
HSK

[Hisoka]

I guess i should stick to betaseron till this FG treatment becomes more reliable.

Thanks alot, sho. really appreciate your help

[shoshin]

I will try to answer your questions.

> Fingolimod isn't yet approved all over the world? so it cant be prescribed in hospitals yet? big chance i cant find in Australia and carry on with my betaseron injections.

Fingolimod is currently not available anywhere outside of clinical trials. I know they did large phase 3 trials and that they had trouble recruiting enough people. I don't know if they're still recruiting. Those trials also have a 1/3 chance at placebo so that's probably not a good option for you anyway.

Novartis says they are going to apply for approval in the U.S. and the EU before the end of the year. No way will Fingolimod be approved before February. I am not sure how long these things take, but the makers of Fampridine-SR (a drug for MS symptoms, not a DMD) submitted an application to the U.S. FDA in the beginning of February this year and the drug was fast-tracked for an expedited “priority review." It is still not approved, although it appears to be close. However, even after it is approved, the drug companies still have to ramp up for mass production so there will still be some time before it comes to market.

I do not know what the status is as far as approval for Fingolimod in Australia

> Many side effect, as you said, death can be there! But you said it works for some people, does it work for like a specific group of people? like age, level of MS.
my type of MS is not that serious, so does that necessarly mean that it would work?

I have not seen any info on this. The trials were designed for relapsing-remitting MS so if you have that, there seems to be a good chance it will work. So far as I know, they don't have any magic formula to predict who will be helped by MS therapies. After all, they don't really know either how MS works or how the MS DMDs work. So the only way to know is to try and give it a good six months or year unless you start getting a lot worse.

> I need your advice. Am leving to Australia on February, if Fingolimod became approved by then (will it? i dunno), should i go for it? or carry on with my betaseron...?

I think you will have to carry on with Betaseron for now.

Sorry not to have better news, but I hope this helped.

sho

[Hisoka]

Thanks alot for your time.
Ok, so let me summirize all this in questions to make sure i get this. Sorry ill annoy a bit with this.

> Fingolimod isn't yet approved all over the world? so it cant be prescribed in hospitals yet? big chance i cant find in Australia and carry on with my betaseron injections.

> Many side effect, as you said, death can be there! But you said it works for some people, does it work for like a specific group of people? like age, level of MS.
my type of MS is not that serious, so does that necessarly mean that it would work?

> I need your advice. Am leving to Australia on February, if Fingolimod became approved by then (will it? i dunno), should i go for it? or carry on with my betaseron...?

Thanks alot agin Sho for your co-operation.

[shoshin]

Hi and welcome to the forum. I heard you were interested in the Fingolimod trial. I've been in a phase 3 trial for FTY720 since June 2008. You probably know this, but in case not everyone does, Fingolimod is an oral immunosuppressant that works by keeping the lymphocytes in the lymph nodes and thus reducing the number of T cells and B cells in the blood (including both the misguided ones and the normal ones). The idea is that then there are less of the errant ones available to go to the brain and wreak havoc.

I think in the long run, they are hoping to come up with more targeted immunosuppressants, but since FTY720 is a general immunosuppressant, one of the main side effects is a tendency to get more infections, such as colds. This hasn't particularly happened to me. In fact, I recently got sick for the first time since I've been in the trial (a good thing since getting sick tends to increase the slope of my decline). However, they have reduced the dosage from what they originally tested and that seems to have reduced the overall side effect rate.

"Regulatory submissions for FTY720, planned in the US and EU at the end of 2009, will seek approval for the lower 0.5 mg dose based on comprehensive Phase III results establishing its positive benefit-risk profile." (http://www.novartis.com/newsroom/media-releases/en/2009/1344775.shtml) I'm not sure how long it takes to get the final approval, but it sounds promising for the drug to be widely available in the not too distant future. I don't know how things work in Australia, though.

It's true that so far Fingolimod doesn't seem to have done much for me. I am pretty sure I am on the drug because at my last physical my WBC was way low (low enough that my PCP was thinking about AIDS). However, I am really not sure that I have RRMS (which is what they're testing for) so that might be why it's not working for me. I read an article recently (which I hope to summarize for the forum when I understand it a little better) in which they showed via autopsies that the type of inflammation found in the brains of people with MS varied between people with RRMS (T and B cells) and both primary and secondary progressive MS (plasma cells) so that may be part of the problem.

However a lot of people have had great success with FTY720. For example, check out the Fingolimod & Me blog at http://fty720.blogspot.com. Two or three people have died from infections while in the trial, but so far as I know, all the other side effects have been reversible and there may have been extenuating circumstances in the situations where people died.

Let me know if you have any other questions that I might be able to answer.

sho

[sllowe]

Hi again,

I didn't go on steroids for my increase in symptoms. One of my problems that lasted for about 5 months was burning on my back which was accompanied by bad sensations in the middle of my spine and bigtime pressure. Made it hard to sit or lay, and standing still. Going to the bathroom was an issue too (for example, pushing was hard not to mention adding the pressure of a push). I'd have to keep on moving and thought it would never let up.  Slowly, it started to back off after about 4 months, but lasted the majority of 5.

At that time my MRIs did not reveal new lesions and just a slight difference in measurements from the previous facility to the newest.  So, guess that's why I said wasn't sure it was an attack because there were no new lesions or enhancement.  Dr. had prescribed lyrica to see if it would help, but I didn't take it.  Just waited it out and now I only have minimal pressure. It's always there, but not as bad.

Oh, and a doosey, meant as compared to the rest, sounded as if this one "takes the cake" or so to speak.  Sorry I'm not able to come up w/a better explanation for my redneck slang..ha/ha...

Glad you are still taking your beta - I'm on a comparible one, Rebif.

-Shell

[Hisoka]

Sorry i have another qs for you.

you said: "I've had some issues last for 4-5 months too not sure if they were relapses" did you see any improvement because of the steroids? Or you just waited during those 4 months?

because i am just waiting, only taking my normal betaseron injections 3 days a week.

[Hisoka]

Thanks alot.

I will check up those health pages, thanks. I hope i get over this soon

[Hisoka]

Thanks, i don't think ill be leaving this forum! its great being here.

Yeah actually i had mny relapses but they were so normal and went away like in a 5 days - a week maximum. But this one is the weirdest!
What do you mean doosey?

I read Shoshin's topic about the trial, i really hope she feels better and this eventually works, it would be great if i she's around. Because i read alot about the FG treatment, but nothing would be more certain than a real experience.

Thanks again
HSK

[saveone]

hi and let me add my welcome to that of the others and sorry this relapse is lasting so long.

Have you read any of the health pages.  There is a lot of good info to found in them.  You can access them in top right corner of the page.  Just click the yellow icon.

Best of luck with your studies.  We do have some members from Australia.

Take care and I look forward to seeing you around,

terry

[sllowe]

Hi Hisoka,

Sending along a belated welcome. Have you had many relapses in the past 4 yrs? This one sounds like a doosey. I've had some issues last for 4-5 months too not sure if they were relapses, but surely they gave me a run for my money - thought I'd never see improvement, but I did eventually - so hoping your at the tail end of it and it simmers down.

We have one member that may have been on the Fingolimod (trial) named Shoshin. I'll look her up for you and see if she's around for you.

Glad you found us if even by accident.  Hope you plan on sticking with us!

-shell

[Hisoka]

Thanks alot meg and shadowsister.. I really hope i get better anytime soon. :)

Dear, Julia, thanks for your welcome, i didn't really know am the only one from Oman here! :)
I just hate those steroids, i have my reasons.
Unfortunately there are no other options here, you must take the treatment in the hospital.

i am leaving the country soon for my studies, to Australia actually, and i needed more info about the FG treatment because maybe it would be my next treatment instead of the betaferon injections am taking now, much easier for me.

[meg321]

Welcome to this forum..its a great support system and the people are awesome !!
Can't remember how i found it, go figure !

I am having a relapse at the moment, its the worst I have had since I was at my worst at the beginning of the year,,was dx'd in April. But now i knw it will get better.

I always want to ask how long will this last and realize noone knows.. but today I show signs of improving.

But 4 months, i can understand your concerns....but it will not last and yiu will feel better. I will keep good thoughts and keep you in my prayers.

hugs, meg

[ShadowsSister]

Hi, Welcome, I am sorry you are having a rough go of it, but things will get better, none of us know when... as for the length of your relapse, it not that long,   some last a few days, some last a few months and some even longer,,, Yours isn't the longest I have ever heard of... So try not to despair, take it one day at a time.... work through and stresses that are bothering you and try to rest and relax.... as well as talk to your Dr.


I will be praying for you and sending you gentle hugs on the winds.{{{{{~!~}}}}}

[Sarahsmom46]

Hi and welcome to the our forum.  I found the group by accident too and have stayed evers since.  This is the friendliest, most intelligent, and helpful people you will come across.  Glad to have you with us and from Oman.  I don't think we have anyone else from your neck of the woods.  

Wwo, a 4 month relapse!!!  My dear, I think you take the prized for having the longest relpase around here.  You are young and I'm sure don't want to be in the hospital for these treatments, but is there any other reason why you don't want to resort to the steroids?  It is not good that the symptoms are sticking around so long and the damage that could be going on as a result.  Please talk to your neurologist and let him/her know what is happening.  If you don't wnat to be in the hsopital, are there other options?  Here in the US we can do our steroid treatments at home or in an out-patient center.  

I don't have any info to give you on the FG treatment, but we have a few people here on it and they will hopefully be along to share their experience with you.  In the meantime, takecare and again welcome and thanks for joining us.

Julie