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looking for advice on certain drug medications

PostPosted: Sun Dec 03, 2017 2:32 pm
by Valley
Hi all

I am looking for advice from anyone on gilenya or Tecfidero. Sorry if I have spelt those wrong, just have not got the blurb right beside me at the moment to check spelling. The neurologist wants me to go on one of these medications, but I do not know practical stuff about either to make a decision. When I try to ask the neuro team I just get told how wonderful the other medication is, not the one I am asking about (this happens whatever one I am asking about). I have an appointment on Tuesday and they are going to expect a decision.. Any advice or antidotes would be very appreciated!

Valley

Re: looking for advice on certain drug medications

PostPosted: Sun Dec 03, 2017 4:12 pm
by californiadreamin
Hi valley,

I can give you my thoughts but do you have any info about yourself you can share? Age? Planning on having kids in the future? Did you have an mri recently and did it show inflammation? Lastly those were the only two you were offered?

Re: looking for advice on certain drug medications

PostPosted: Sun Dec 03, 2017 4:44 pm
by Valley
Hi californicadreaming

Thank you for getting back to me. I am in my early forties, no plans to have kids. No other treatment was mentioned or was I given the option of. I am currently waiting on a mri. This all came about from my putting on a lot of weight from rebif. I explained how little calories, fat and saturated fat I consume. Not sure if I was believed at the time so was sent for many tests. They must have confirmed my story as I was treated very differently by neurologist afterwards. I am waiting on one other test to do with my hormones. The reason these two are the only options I was offered is it was felt with hormone problems that oral medication is the best.. I want to make an informed decision but feel I am being rushed to just make up my mind.

Any help would be greatly appreciated!
Valley

Re: looking for advice on certain drug medications

PostPosted: Sun Dec 03, 2017 7:21 pm
by californiadreamin
So my wife has been on Tecfidera for a year. While there are GI issues that are typically the largest concerns with it, most people dont have problems and if they do they are short lived for 6-8 weeks. My wife had no issues for 2 weeks and then it hit her like a rock and we almost gave up. However, she is doing great with it now. We try to follow OMS very carefully. The meditation component is sometimes just substituted with a funny 30 minute TV show.

Gilyena has a rebound effect in 10% of the people that take it which makes it risky to stop without the potential of a serious relapse. Both Tecfidera and Gilyena are on paar with effectiveness though closely looking at the studies, Gilyena might be slightly better.

If you look at the posting on the new page you will see that data is starting to come out questioning how effective medication is past 40. My wife is 45 so it has us thinking a bit as well. The main take away is that given that the medications are probably getting less effective as we age, I would recommend starting with Tecfidera for several reasons:

1) Gilyena needs a little more monitoring
2) Gilyena changes your heart rate etc. If you are over weight or older, I am just personally more concerned with heart health then if I was 25.
3) Tecfidera can be stopped at any time
4) Tecfidera is believed to work through several mechanisms but one is changing your microbiome in a positive way. If you are having unexpected weight issues, maybe changing up your gut could help and unlikely to make it worse. The principal is really if you are holding a hand of cards you dont like, getting a new deal is probably a good thing.

Both medications are better at slowing progression the rebif based on the current studies.

Thats my personal opinion. I am not a medical professional but I pretty much read every study and journal on a daily basis related to these two drugs.

Re: looking for advice on certain drug medications

PostPosted: Mon Dec 04, 2017 11:36 am
by JC2
I take gilenya and have for 5 years.
When starting you have to ensure are immune or vaccinated prior especially to varicella (chicken pox/shingles). You need a baseline ecg to look for conduction problems and some drugs or cardiac histories are a relative contraindication. If all ok then monitoring for 6hrs or more with first dose is required. Eye checks at 0, 3, 6, 12 mths or similar for macular oedema also advised,, none of which were a problem for me.
Bloods should be watched mainly to see effect on WCC; i have had problems with that but continue on lower dose.
I honestly wouldn’t know i am on it if not for watching wcc - and not having relapses.
As already said, rebound on cessation is possible but not universal
It is in the moderate to highly effective group and there is some suggestion of bit better protection against atrophy.

I have to say I dont understand why these two drugs are the only ones being offered or the rationale; hormone issues per se dont necessitate oral formulations, Keep asking questions but hopefully the answers wont confuse things even more!.

Re: looking for advice on certain drug medications

PostPosted: Mon Dec 04, 2017 12:25 pm
by Valley
Hi

Thank you for replying. I can not really post for long at the moment. The reason I was told for these two medications is my skin was really suffering with needles, even blood tests were causing bruising. I was told they think this is hormonal so these two drugs were suggested instead of a injectable. I am very confused at the moment because I have been more or less told to pick one, and things not being properly explained does not work with me.

Thanks again
Valley