Blogging Bunny-style

Ponderings on Fingolimod etc.

with 4 comments

I feel a bit blah.

Did I mention how I thought that the steroids I was given three weeks ago weren’t up to scratch? Maybe old stock, maybe got left lying in the sun somewhere while in transit? Whatever the reason, it doesn’t seem to have interrupted my relapse the way it should have. I am now left with the dilemma of taking some more (which is a bit dangerous, considering the last dose was so recent) or waiting it out a bit. Waiting is also scary, as the longer inflammation occurs, the more nerve damage is done, the longer the remyelination/ rehabilitation process and the greater the likelihood of permanent damage resulting from it.

The symptoms are as follows: numb(er) feet/ legs. This is creepy but not debilitating as such. Then there are my hands, which are getting increasingly numb and are in the process of losing co-ordination. This is disturbing, especially the right hand (I’m right-handed) and could influence quality of life. Quality of life is a huge consideration for anyone living with a chronic illness. It is not so bad that I can’t write, for instance, but it might mean the difference between being able to play the piano or not. It’s not that bad, and certainly not apparent to anyone else yet. But it is affecting my state of mind. It’s kinda hard to ignore.

I’m quite convinced that as far as the Fingolimod trials go, I am on the smaller of the two dosages. Phase I and Phase II trials had two dosages of the meds: 5mg and 1.25mg. The results of those trials were that both dosages had the same clinical efficacy, but that the smaller dosage had less side-effects. Now, in the Phase III trials, they have adjusted the trial dosages to 1.25mg and 0.5mg. (They scrapped the 5mg dosage and introduced a markedly smaller dosage to the mix).

So herein lies my theory. I reckon I am on the 0.5mg dosage. It has induced quite dramatic improvement in my condition, and I even went for eight months without a relapse at one stretch. But. I don’t think this dosage is powerful enough to stop my relapses completely. They are noticeably milder than they were previously, but they have not been banished.

IfI get invited to go on the extension phase (which I understand is a distinct possibility) then it is a reasonable assumption to suppose that they may adjust the dosage to what was proven to be the most effective dose. I’m thinking at this stage that it will be the 1.25mg.

Of course, I could be sitting the pot miss here, lol. It is all supposition on my part. But if I am right, it would also explain why I have NIL side-effects. Because I’m on a tiny little dose. Maybe the meds will eventually be available in two strengths. My MS is particularly active, so I probably need a slightly stronger dose. But someone who has a more benign case could perhaps get away with a piddly dose of the meds and the resulting non-existing side-effects.

I guess only time will tell.

In the meantime, I am in a bit of a quandary here. It’s subject to change at any given moment, but at this stage I think I am going to try and wait another week before going back to hospital and taking meds again. Then it will at least have been a month since the last session and my kidneys will have gotten a much needed break. Wish me luck.

Written by Maggie

March 24, 2008 at 11:28 pm

Posted in Uncategorized

4 Responses

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  1. Wow, Maggie! Sorry you are having such a hard time! I totally agree with your theory about the dosages and why you might be on the one you are on. I’m guessing I’m on the 1.25 mg due to the fact that I had so many head colds since starting the trials.

    I well know that having problems with your hands is disturbing. To not be able to do the things we love and take for granted — like playing the piano for you, and drawing/painting for me — can leave you feeling very despondent.

    I’ve never, in the last 9 years, had a “mild” relapse. Mine always knocked me down hard and left no doubt about their presence. Since starting this trial I’ve had one “episode” that was determined to be a pseudo exacerbation. I swear, tho, that my hands have gradually gotten a little less coordinated and weaker along the way. Maybe I just never noticed before because I was feeling too bad all over too much of the time. Or maybe I have had a relapse and didn’t eve know it. Who knows.

    Hope you feel better soon! I’m pulling for you, Maggie!


    Jeri a.k.a. TickledPink

    March 25, 2008 at 12:04 pm

  2. Wow … this sucks. I hope you get much more than just plain old luck.


    March 25, 2008 at 9:23 pm

  3. Hey!:o)
    I looked up lymphotropic…and it seems to be related to the I looked that up too…:
    Lymphocytes: A small white blood cell (leukocyte) that plays a large role in defending the body against disease. Lymphocytes are responsible for immune responses. There are two main types of lymphocytes: B cells and T cells. The B cells make antibodies that attack bacteria and toxins while the T cells attack body cells themselves when they have been taken over by viruses or have become cancerous. Lymphocytes secrete products (lymphokines) that modulate the functional activities of many other types of cells and are often present at sites of chronic inflammation.

    You mentioned T cells…guess there could be a connection…to what you are taking now..:) From what I understood..your’s is a drug..? I started taking vitamins (I did keep on taking interferon..but supplementing it with vitamins:) far so good..just so many pills to take everyday makes it a bit uncomfortable..but at least I know it won’t ”harm”..:p
    Wish you all the best :o)
    take care!!


    March 29, 2008 at 5:48 pm

  4. If you want to hear a reader’s feedback 🙂 , I rate this article for four from five. Detailed info, but I have to go to that damn yahoo to find the missed parts. Thanks, anyway!

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