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Zyklon
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Re: Hello

Post by Zyklon »

I did not remember. It was 2-3 times more than the recommended.

Today I somewhat feel better.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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jimmylegs
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Re: Hello

Post by jimmylegs »

glad to hear that you're feeling somewhat better!

re melatonin, I have understood ~3mg to be the recommended dose for conventional use as a sleep aid,
9mg to be what worked on epileptic seizures for children above 30kg,
and as much as 18mg to have been effective for RBD in adults - so as much as 6x conventional dose.

https://www.frontiersin.org/articles/10 ... 94872/full
"Treatment can be initiated for RBD ... Oral treatment options include melatonin (3–18 mg) nightly (144) or low doses of clonazepam (0.25–1.0 mg) (145). While clonazepam is considered first line treatment for RBD, melatonin is often effective and better tolerated (144)."

https://www.ninds.nih.gov/health-inform ... /myoclonus
"Clonazepam, a type of tranquilizer, is the most commonly used medication to treat some forms of myoclonus."

and just for fun, some reported post treatment clonazepam withdrawal symptoms include severe hypnic jerks.
could be a good reason to give melatonin another try at a higher dose..!
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Zyklon
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Location: Turkey

Re: Hello

Post by Zyklon »

No hynip jerks yesterday.

Tomorrow I will meet a new friend, Aubagio. I will share my experience.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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jimmylegs
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Re: Hello

Post by jimmylegs »

good news! hope you and your new friend get along well :)
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NHE
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Re: Hello

Post by NHE »

Hi Zyklon,
Zyklon wrote: Mon Feb 13, 2023 9:08 am No hynip jerks yesterday.

Tomorrow I will meet a new friend, Aubagio. I will share my experience.
You may be interested in reading the Aubagio prescribing information.

http://products.sanofi.us/aubagio/aubagio.pdf

It lists increased neuropathy as a side effect. That might mean if your neuropathy gets worse, that it could be the Aubagio and not your MS. There is also a black box warning for liver toxicity. That's something you'll want your docs to watch out for.
Zyklon
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Location: Turkey

Re: Hello

Post by Zyklon »

Hi NHE,

Thank you for reminding me. I have experienced increased liver enzymes with Rebif which recovered in 2-3 months. I can live with some neuropathy as long as I am in good protection. Lots of headaches with Rebif but very much worth it.

The only side effects that worry me are PML and cancer. Aubagio seems very safe about those.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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NHE
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Re: Hello

Post by NHE »

Hi Zyklon,
Here’s a link to a video by Gavin Giovannoni. He discusses teriflunomide as well as other drugs in the context of inhibiting EBV.

viewtopic.php?p=262656&#p262656
Zyklon
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Location: Turkey

Re: Hello

Post by Zyklon »

Hi NHE,

I watched it. Really good video.

BTW I am waiting for some tests. Got the Aubagio. When docs give me the green light, I will share the experience.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
Zyklon
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Posts: 401
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon »

Green light and I have started Aubagio.

Got the first tablet. Looks cute :D Too early to talk about anything.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
Zyklon
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Re: Hello

Post by Zyklon »

Well after 1 week of Aubagio, I only experienced very minor flushing.

I am still somewhat recovering. I guess this was a very minor relapse.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
Zyklon
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Posts: 401
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon »

Well, I am recovered without steroids. Aubagio is going well for now. If a slow escalation of DMT works for me, it will be awesome. I want to save the big guns for later when I will need them most. Also, I want to see more long-term follow-up studies for Ocrevus and Mavenclad. HSTC is another potential area. Big pharma and docs learn more and more every day.

Nowadays, I kinda understand why docs have different approaches and let patients decide on the DMT. My first relapse was a nightmare. Tysabri, and Ocrevus might be offered by some docs. Rebif surprisingly worked for me after such a relapse. That was because of luck or something I did. MS is very very complex with lots of variables. Nothing is absolutely right or wrong. I don't know of any other disease like MS. It's so terrifyingly unique...
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
Zyklon
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Posts: 401
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon »

T0 and T0+30 Aubagio tests. These are only for information:

White Blood Cell Count 6,94 to 4,3 x10^3/µL (This is really interesting.)
Hemoglobin 15,0 to 15,5 gr/dL (Not alarming but no explanation.)
ALT 33 to 43 IU/L (This is well expected. Nothing major but needs frequent monitoring.)
CRP 2.1 mg/L

The last 30 days were a rollercoaster for me. Ups and downs. Fatigue (Liver ALT increase maybe?), vision issues, dizziness, ataxia, and diarrhea. Nothing lasts more than 2 days, mostly some hours.

I plan to get an MRI to see if I have active lesions and have a baseline for Aubagio. I have a feeling that it is not working which I will prove with another MRI 3 months later.

Diet-wise I try to follow an anti-inflammatory diet without any junk and bad oils. Salmon, blueberries, walnuts, almonds, vegetables. I already lost 3 kilograms and looking much better.

Exercise depends on my mood and fatigue. I push myself to go pilates and walk. Maybe I switch back to GYM.

I need to go to a psychiatrist. It is mentally tough nowadays. I need less anxiety, better sleep, and mindfulness.

Take care all ;)
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
Zyklon
Family Elder
Posts: 401
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon »

Well well well. I am very much surprised. From my last message:
The last 30 days were a rollercoaster for me. Ups and downs. Fatigue (Liver ALT increase maybe?), vision issues, dizziness, ataxia, and diarrhea. Nothing lasts more than 2 days, mostly some hours.

I plan to get an MRI to see if I have active lesions and have a baseline for Aubagio. I have a feeling that it is not working which I will prove with another MRI 3 months later.
Got the MRI 2 days ago. No new lesions and no change. I restarted Celexa, my good anti-depressant friend :-D I lost 7 kilograms of body weight in the last 2 months. Aubagio goes great.

Take care, mental health is important.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
Zyklon
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Posts: 401
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon »

I have a new silent C6 spine lesion one millimeter in diameter. Since it is a spinal lesion, I will not risk anything and change my DMT to a stronger one. Mavenclad or Ocrevus if my doctors give the green light. Another NEDA journey will start soon :)

Don't forget your MRI and other checks. As you see in my case, they are critical.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
Zyklon
Family Elder
Posts: 401
Joined: Sun Apr 16, 2017 12:45 pm
Location: Turkey

Re: Hello

Post by Zyklon »

I got my first Ocrevus infusion today. It was reaction-free. I feel a little bit dizzy after 5 hours. The second half-dose is 15 days later. I want my NEDA back. Let's play the game again ;)
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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