I did not remember. It was 2-3 times more than the recommended.
Today I somewhat feel better.
Hello
Re: Hello
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!
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!
Re: Hello
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..!
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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Re: Hello
No hynip jerks yesterday.
Tomorrow I will meet a new friend, Aubagio. I will share my experience.
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!
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!
Re: Hello
good news! hope you and your new friend get along well 
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use the report button to flag problematic post content to volunteer moderators' attention.
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Re: Hello
Hi Zyklon,
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.
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.
Re: Hello
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.
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!
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!
Re: Hello
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
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
Re: Hello
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.
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!
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!
Re: Hello
Green light and I have started Aubagio.
Got the first tablet. Looks cute
Too early to talk about anything.
Got the first tablet. Looks cute
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!
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!
Re: Hello
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.
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!
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!
Re: Hello
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...
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!
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!
Re: Hello
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
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!
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!
Re: Hello
Well well well. I am very much surprised. From my last message:
I lost 7 kilograms of body weight in the last 2 months. Aubagio goes great.
Take care, mental health is important.
Got the MRI 2 days ago. No new lesions and no change. I restarted Celexa, my good anti-depressant friendThe 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.
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!
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!
Re: Hello
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.
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!
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!
Re: Hello
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!
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!