Azilect for PD

Asking for your experience with rasagiline (azilect) (dose per day) in combination with carvidopa-levadopa.

I took rasagilne-standard dose but felt no different so stopped taking and only take C/L. Took for at least 6 mo.

I took it for about 2 weeks and had some bad side effects. It was 9 years ago, but it is on my med list as allergic to med listing. A few meds for different issues I end up in the 1-2% of people that have rare side effects.

My husband was diagnosed with PD 7 years ago. He’s been doing pretty well through medication and intense exercise 🤞🏻

Recently he wasn’t feeling so well. Saw his Movement Dr. as it turned out, he was having bad side effects of Rasagline. (He’s been taking it for at least 5 years). His gait was off. When he walked his left hand would curl behind his back. Acting out violently in his dreams. More muscle stiffness, etc. he’s been off of Resagline for 4 days now and he says, he hasn’t felt so good for such a long time. It’s not a cure, but a warning that, sometimes certain drugs could turn against you.

It's also a good idea to review you med with your doctor from time to time. I take 21 meds - PD, asthma, high bp, high choresterol, low thyroid,, particularly if you are fetting meds frim mire than 1 doctor. I try to do it once a year. Things change: the may have discovered an new interaction between meds. Mabe it's ok to take med A with med B, and ok to take med B wirh Med C, BUT you shouldn't take all 3 of them. Or mabe some newbproblem with a particular med had come yonlight; maybeva new med has been released tgart wiuld be better for you. I include mybscedulr fir taking my meds, because maybe i've been taking somethun on a full stomach and i snhould have been taking ut on an empty somach OR, maybe you've been taking a med for 10 years for osteopoenia and it turns out that if you takr it oire tha 7 years, it can makeyour bones brittle. ( really happened to ne!)

He sees his PD Dr. every six months. He’s keeps on top of things. He does see different doctors for different issues. He’s fortunate to have wonderful care.

He is, indeed fortunate, as am I. And I believe that we can help our
overworked health care professionals by watching things like this and
taking on some responsibilities, because they are human just like us, and
sometimes may not be able to track some things as closely as they would
wish. There are so many new drugs, and side effects that may come to light
after we are prescribed a med, that even the most rigorous trials may not
have found, because they aren't going to have 7-year trials and have to
wait for real-world use to figure out that beyond 7 years, you shouldn't
take it any more. There is so much coming out that iyou doctor could easily
miss the notice. Even so, imagine what would have to be done to review
patient files for meds taken and how long they've been taking them.
Electronic records can help some, but even they require time and attention.

I have just returned from hospital due to a bad reaction to Encapatone which included muscle seizures for up to 2 hours. Whilst in Hospital they discovered small blood clots (Pulmonary Embolism).

The clots were treated, but I remain on anti coagulants.

During my stay I became Delusional, and suffered Paranoia. I was told that this was due to Azilect so am now on a titration down. This seems hard as my dopamine levels are going up and down, as I go through a one day on Azilect, 2 days off.

In addition Opicapone has been added.

So my questions are why after taking Azilect for many years have I suddenly developed hallucinations?

What is the best way to titrate down Azilect?

Is there any evidence that strong muscle cramps can cause blood clots?

What is the best way to manage dopamine levels with all this going on?

@tony42miles - I'm really sorry to hear about these side effects you've experienced from encapatone and rasagiline (Azilect).

Since there is no discussion currently on encapatone in the Mayo Clinic Connect Parkinson's support group https://connect.mayoclinic.org/group/parkinsons-disease/, I'd really encourage you to start one. If you share about what you experienced that sent you to the hospital, others who've experienced side effects can also share.

In the meantime, I've moved your post related to rasagiline (Azilect) here so you can talk to members such as @cartercd @angood1969 @dlc1953 and others:

- Azilect for PD https://connect.mayoclinic.org/discussion/has-anyone-taken-azalea-for-pd/

Also inviting @hopeful33250 to this discussion, as she may have input related to side effects from rasagiline (Azilect).

What does the doctor who suggested you titrate down on rasagiline (Azilect) say about your dopamine levels going up and down and whether there might be alternate titration plans you could follow?

The spelling is Entacapone. It’s supposed to increase on time by about 30%. Roughly 10% will develop diarrhea. Almost everyone’s urine turns orange!
I just left the doctors office today and I did not take the offer!