Rasageline: Should be rescheduling be used... - Cure Parkinson's

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Rasageline

Danasr profile image
28 Replies

Should be rescheduling be used before trying to CL? I thought it should be used before going on C/L. My movement specialist told me that he wanted to put off putting me on that, since I’m so young, as long as possible. Now He’s doing a 180 prescribe CL in conjunction with the Rasageline. As per usual I did not get to speak to him I had to speak to my nurse and she just told me that that’s what he wants me to do .... any thoughts I really need advice.

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Danasr profile image
Danasr
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28 Replies
Danasr profile image
Danasr

Sorry I meant Rasageline not rescheduling...using my tremor hand...the struggle 😂

park_bear profile image
park_bear in reply toDanasr

Just FYI you can edit your post by using the "more" pulldown menu. Rasagiline can be used separately from C/L. Together they are synergistic since it helps conserve dopamine.

I would not worry about starting C/L if you need it. Better to properly medicated than under medicated. C/L hastening the start of dyskinesia has been shown to be a myth.

Pa-zzi69 profile image
Pa-zzi69 in reply topark_bear

re: C/L hastening the start of dyskinesia has been shown to be a myth

According to my neurologist, expect dyskinesia in 7-10 years, whether I medicate or not with C/L.

Note: am 77 yrs old, diagnosed Parkinson 1.8.’19, rated on 3.’19 at 15/100 on the updrs scale, started 3.12.’19 on Dr Costantini’s High Dose Thiamine, vitamin B1 hcl, 500mg/day, a fraction [12-25%] of the 2-4g typical dosage; self-prescribed and self-monitored during Dr Costantini’s convalescence. MarcP

MBAnderson profile image
MBAnderson

Is he too busy to base prescribing judgments on 1st hand evaluation ?

Danasr profile image
Danasr in reply toMBAnderson

Yes, I suppose so. I have an appt. with a new movement specialist In April. I will wait to talk to her...I’m on my 3rd specialist. Can’t seem to find the right fit.

MBAnderson profile image
MBAnderson in reply toDanasr

I'm on my 3rd, too, but like him, so maybe #3 will be the right one for you.

Danasr profile image
Danasr in reply toMBAnderson

Thank you!!i always get great support when I reach out to this group. No one else gets my struggles...they try but they can’t possibly.

MBAnderson profile image
MBAnderson in reply toDanasr

Agree. We would have to walk in someone else's shoes to fully understand their situation - and they in ours.

Livin_MY_life profile image
Livin_MY_life

Hey There Danasr,

I take L/D up to 3x per day when needed and participate in a Rasagaline trial. Uncertain if I have placebo or not ( my mind changes constantly!) but I feel good most of the time. My understanding is the Rasagaline can be expensive but if I am taking it I haven’t seen any PD changes in almost 1 year. Which is the premise behind the study. (except times when I have had too much HDT, resolved when I back off) Sooo... May be worth a discussion ?

Danasr profile image
Danasr in reply toLivin_MY_life

Thanks. I started Rasageline today.

Livin_MY_life profile image
Livin_MY_life in reply toDanasr

Ok!! Well... I guess like any antidepressants it takes 4-6 weeks to start working. I hope you have positive results. Last neuro visit discussed starting as soon as my trial ends in June. Keep us posted on your experience

Adnelg54 profile image
Adnelg54 in reply toLivin_MY_life

It’s not an antidepressant... I understand it helps slow the progression, it’s not a dopamine...it helps stop the destruction of dopamine...as opposed to the Pd that is stopping the production of it.

Livin_MY_life profile image
Livin_MY_life in reply toAdnelg54

you are correct, rasageline is used to slow down PD disease progression but like many drugs it has multiple purposes. Rasageline is a Monoamine Oxidase Inhibitor and is one of the first class of antidepressants to be developed. 5 examples of MAOI depression medications

rasagiline (Azilect),

selegiline (Eldepryl, Zelapar),

isocarboxazid (Marplan),

phenelzine (Nardil), and.

tranylcypromine (Parnate).

Danasr profile image
Danasr in reply toLivin_MY_life

You are so knowledgeable; thank you!!

Hikoi profile image
Hikoi in reply toLivin_MY_life

I understood Selegeline was used for depression (and still is) but rasageline was specifically developed for PD treatment and is not used as an anti depressant though it may have some anti depressant effects.

Livin_MY_life profile image
Livin_MY_life in reply toHikoi

Cool! I thought that it was just "re-branded" because it falls into that class of (MAO) type B inhibitors. You know like Wellbutrin and Zyban. They marketed Zyban as an aide to help stop smoking and Wellbutrin was (still is) a common antidepressant. I guess they still sell Zyban too? Market developers are so smart!!

laglag profile image
laglag in reply toAdnelg54

I've been on Rasagiline for at least 10 yrs and haven't had problems with it. I decided to Google it a few minutes ago & this is what came up.

I've never noticed it being an anti depressant before?

Brand name: Azilect

Antidepressant

It can treat Parkinson's disease.

Brands: Azilect

Availability: Prescription needed

Pregnancy: Consult a doctor

Alcohol: Interactions can occur

Hikoi profile image
Hikoi in reply toLivin_MY_life

I’m surprised you are in a trail and still able to take HDT. I thought any additional medication / vitamins would be contra-indicated.

Actually the trial also surprises me as Rasageline has been available in the UK for more than 10 years and in the US quite some time too.

ncbi.nlm.nih.gov/pubmed/224...

Livin_MY_life profile image
Livin_MY_life in reply toHikoi

ncbi.nlm.nih.gov/pmc/articl...

Livin_MY_life profile image
Livin_MY_life in reply toHikoi

Right?! But no, I have not been excluded due to HDT use. My one year trial ends in June. The trial measures free water via MRI imaging. The mri was interesting , sorta like a video game to ensure engagement during the screen. Initial Testing was interactive and extensive... I hope valid.

researchgate.net/publicatio...

Livin_MY_life profile image
Livin_MY_life in reply toLivin_MY_life

Measuring free water levels as a biomarker

Hikoi profile image
Hikoi in reply toLivin_MY_life

Thanks LML, thats a fascinating read and on a topic I had not encountered before.

So free water could be a bio marker and in the experiment those on rasageline showed lower levels of free water than those not on rasageline. Possible proof that rasageline delays progression. Amazing!

Selegiline and rasageline, the differences

ncbi.nlm.nih.gov/pubmed/212...

Livin_MY_life profile image
Livin_MY_life in reply toHikoi

A step in the right direction if validated. The trial will be continuing beyond my end date so we will have to wait a while before the outcomes are shared. I’ve made the personal decision to continue with the resagaline because although I am uncertain if I am currently taking the placebo or not, I have experienced zero change over the past year.

Danasr profile image
Danasr

Will do.

Motherfather profile image
Motherfather

well danasr i took it for years it done nothing for me so dont worry to much about it as its expensive and it was a waste of time for me you will understand after awhile you will feel its not doing anything for you.sorry to be saying this to you ..aaaa one of my fav songs just came on..ill just have to send it to you..regards john..

Adnelg54 profile image
Adnelg54 in reply toMotherfather

Since it’s purpose is to help slow progression... you wouldn’t know it’s working

Motherfather profile image
Motherfather

youtu.be/rExJ6j5OeCo

Adnelg54 profile image
Adnelg54

Azilect (rasageline) comes first...c/l gets added in. First thing neuro put PWP on was azilect...8 years ago. Cl didn’t come for 4 1/2 years..

mds call azilect Vitamin A.

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