Off Gilenya... have to go through process again. Confused.

[NintendoGurlie]

I recently overcame a flare and the flu. When I was in the hospital, my neuro took me off my DMD which is Gilenya. The hemotologist said for him to take me off of it as my WBC was dangerously low and I needed to be in isolation. At first for me, then for the workers because I had to flu. The story is in the New to MSWorld forum.

Now I am confused. He doesn't do Gilenya so he's finding a clinic since I've been off it more than 2 weeks. (3 or 4 I don't know, cog fog lol) anyway I've been feeling great since I've been off it, a little stronger, a little faster, and getting around with my cane well and for longer periods of time. I asked him about it and he said sometimes when someone gets off a DMD they sometimes feel better, but it's just temporary and he spoke with the hemotologist today and she said the flu made the WBC really low so he wants to get me back on Gilenya (had been on about 4 years)

I am confused. I feel good, better for all intents and purposes. I am back to where I was before the flare and the flu and feeling better than I have in years even though I still don't walk well and all that business. His office is supposed to contact me with a place to go through the Gilenua start up 6 hours stupid thing again since he doesn't have a traditional office or staff to monitor me. Then I do that and he wants me back on it. Then the vampire, I mean hemotologist that took 12 vials of my blood, wants to do a CBC with my PCP in 2 weeks after being back on it (if I pass the test *rolls her eyes* heehe) and then again in 4 weeks to make sure it's not the Gilenya but the flu that had dropped my WBC so severely.

I guess what I'm blathering about is, I don't know if I really want to go back on a DMD if I can feel like this without one. Anyone experience a situation like this? I mean I know a flare can come back, but after years, I feel really darn good, I'd forgotten what good felt like. Still have the symptoms that keep me disabled, but feel good inside and out. However, I know if I don't get back on Gilenya or another DMD, I'll just be knocked down sooner or late, probably sooner, with another flare. *sigh* Anyway, if you read this thanks. Sorry it doesn't make much sense, I just had to put it out there how I was feeling.

Hope you all are doing well and your best and let's keep fighting! Take care and see you around the boards or chat. Will update but gotta get all docs in sync before even I know what's going on.

Best regards

NintendoGurlie "Memphis"

[Carolinemf]

Hi,
I had a really bad time n betaferon years ago and for roughly 12 yrs I took nothing for ms (just symptoms etc). I believed i'd given it a good go for up to 4 yrs (approx) but i felt that it's side effects were worse than MY MS. I refused steroids after 2 treatments too. It was to much to feel ill from these things as well as weak etc from ms. My neuro wasn't very happy with me because i had originally been part of a study and I think he kind of lost interest in me after I DECIDED to do my own thing so to speak.
I still think this was the best thing I did for me at the time. I have now changed neuro's and have been on Ty for almost 5 yrs.

I would draw up a pro's and con's list and don't feel you MUST follow others recomendations for YOU. Consider them and also consider other alternatives - does it have to be Gilenya?- you may tolerate something else better.

We are unfortunately unable to definitely know if any of these meds we take are helping it is mostly perception based.

Many have never been on meds or have had breaks , some take what ever they are offered as soon as they are offered and upgrade to the next strongest med asap.
It is an individual choice.

Docs are there to HELP us. So ask questions and mull things over and feel free to make YOUR decision.

[Thinkimjob]

Hello🙃 I can assure you, you are not alone thinking, "I feel better off the drugs".

Because you do. The trouble is these DMD/Ts aren't meant to make you feel better.

In my experience (Beta, Copaxone, Aubagio, Gilenya) they make you feel worse.

But as you will be told, they're not meant to make you feel better but meant to reduce the number of flares and hopefully slow progression.

It is maddening. If there was a cure, I would happily put up with any and every side effect.

But there is no cure. And the only way to "know" if a drug "works for you" is not to have as many flares.

Sorry for rambling - Gilenya is giving my legs an excellent workout (rollating to the lavatory and back minutes after I eat or drink anything).

Let's just say I'm not Usain Bolt, worse luck.

[msgijo]

Hi NintendoGurlie.

I understand what you men about feeling better. I had taken Gilenya for 5 years - until last May - but quit taking it when the side effects became too much for me. Horrendous headaches, fatigue (worse than "NORMAL"), vision problems etc.

I am finally feeling pretty good. Yeah the 'normal' MS stuff, but doing well here. BUT my neuro has decided that I MUST be on a DMT, and decided that the one for me is Aubagio . Like you, I understand the reasoning for taking the poison - I just wish that I could convince myself that feeling bad taking the DMT is worth it .

No word of wisdom from me. Just know that somebody understands. Good luck with the 'first dose' day .

[JerryD]

Hi from Philly! Boy, it's cold here! I see that you are in the United States, so you should be able to get the entire selection of MS drugs. Did you ever hear of Lemtrada? Maybe you can ask your doctor if that one is for you! I just had that treatment and I feel better than I have felt in years !

[ru4cats]

Not taking a DMD is always a possibility, and there are many with MS who don't. However, it's just not a risk I would be willing to take. It's important to remember that MS is like an iceberg; most of the damage being done is hidden, and you won't know what the damage is until it's too late (think Titanic). MS causes inflammation, and it's the inflammation that causes a loss of brain volume; the loss of brain volume determines what your long term disability will be.

I would look at one of the infusions, since they have been shown to have the strongest efficacy. Tysabri, Lemtrada, Rituxin, and a new one, Ocrevus, that is due out soon. They all require the least amount of intrusion on your daily life (at most once every 28 days), with the fewest side effects. You need to really look at the side effects of each, but I'd sure consider one.

I have been on Tysabri for almost 7 years, and I have been very happy. I am JC- and have recently begun the process of moving to extended interval dosing, stretching my infusions to 5 weeks and then hopefully 6.

Good luck!

[ru4cats]

One last thought...if you choose to go without, schedule a brain MRI at least every six months to monitor for any new lesions that might be leading to future problems of which you might not be aware, yet. I know several MS'ers that go this route.