Getting off azilect

[1953bullard]

You those of you who got off of azilect did you do it cold turkey? Taper down? And bad side effects of getting off?

[JohnPepper]

I was on a similar drug called Selegiline (Eldepryl) for 8 years. I came off it cold turkey in 2002 because my condition had improved so much I did not need it anymore.

I had a few problems.which I do not remember because it was so long ago.

I have not been back on any Pdmedication since them.

[beccainnyc in reply to JohnPepper]

What did you do to improve symptoms

[JohnPepper in reply to beccainnyc]

Hi beccainnyc. I did several things in 1994 which got me into the position where I was able to give up all Pd medication in 2002 and I have been Pd medicatiomn-free since then.

1. Joined a walking program with my late wife and we both improved our general health.

2. Learned to consciously control my movements, because my subconscious no longer works properly. Things like walking, writing, bringing food to my mouth without spilling anything and control my tremors, enabling me to paint and perform many other functions.

3. I started doing brain exercises and still do.

4, Managed my stress levels and avoided anything that stresses me.

5. Adopted a positive attitude towards life in general and especially my Pd.

Everybody should be able to do these things but not many are prepared to put in the effort. I am nearly 86 years old and live a 'normal life'. Thismay not work for all Pd patients because there are many forms of Pd.

What you put in is what you get out.

[beccainnyc in reply to JohnPepper]

Thank you, what kind of brain exercises ? Do these things made your tremor go away?

[JohnPepper in reply to beccainnyc]

Hi

I do Sudoku Puzzles and Crossword puzzles, Scrabble and Chess, to give my brain a workout.

Nothing makes the tremor go away, that I know of.

If you learn how to uses your conscious brain to control your movements thenyou can overcome things like walking and writing , but not the resing tremor.

The best advice for that is to cease being self-conscious about the resting tremore and tell your friends that you have Pd and you are not under the influence of alcohol.

When you cease being sel-conscious about your Pd, you make life so much easier for yourself.

[Hidden in reply to JohnPepper]

Prescription meds for PD are widely acknowledged as mitigating or eliminating tremor for many patients, at least for a time. Seeking natural therapies is one thing, putting up with PD symptoms based on irrational anti-medicine dogma is another entirely.

[JohnPepper in reply to Hidden]

You hit the nail right on the head, when you said, "For a time". Wev don't need medication that on;y relieves symptoms for a time, we need something the reverses the symptoms . Fast walking isn't irrational, it works very well for those who are willing and able to do it.

[134A in reply to JohnPepper]

Hi JohnI recently watched a presentation you gave on fast walking . I live in Canada and walking outside in winter especially fast walking is not always possible. We are locked down due to Covid and can go to the gym or even mall walking which is popular here in winter. Is there another indoor exercise that would replicate the effects of fast walking? I.e. stationary biking, mini trampoline, treadmill etc?

Normally, we travel South in winter for 5-6 months but not this year due to Covid.

Do you have any suggestions?

Thanks

[134A in reply to 134A]

I meant to say “can’t “ go to the gym

[JohnPepper in reply to 134A]

I don't know the answer to this question. It is quite possible that there is another form of exercise that creates the same situation where the brain thinks we are in trouble - 'Fight or Flight'. To do this it must be a continuous exercise, with no breaks, and a t a level that is close to your maximum ability. Walking on a treadmill climbing at a fair angle meets the physical requirements but it does not involve the brain in any compelling way.

I have watched people on treadmills while watching TV. That means the brain is not involved in the exercise.

When walking fast, it would be very dangerous if we are not concentrating on where we are going and on the surface on which we are walking.'

Maybe you can think of something that does both these things together!

[134A in reply to JohnPepper]

I’ll see what I can come up with Thanks

[JohnPepper in reply to 134A]

Good Luck!

[kaypeeoh in reply to JohnPepper]

I stopped taking Sinemet because it made my legs swell enough that I couldn't get shoes on. I take 5mg ropinorole and 10mg melatonin at night and Cymbalta and amantadine each morning. I probably should be working on my memory as I needed three trips to the bedroom to remember the drugs long enough for this post. I've had a dominant hand tremor for 4 years. Mild double vision and mild balance problems but come and go. Prolly should be taking Vitamin D but tend to forget. I'm hoping to get back to HIIT exercise once my achilles is healed.

[JohnPepper in reply to kaypeeoh]

The sooner you get back to doing high intensity exercise and stop relying so much on medication, the better. Good luck

[Dap1948]

Why do you want to come off? I’ve been on Azilect for ten years with no side effects. It was thought at one time to be neuroprotective.

[1953bullard in reply to Dap1948]

I have to come off of my antidepressant if I stay on. My dr no longer thinks being on both is ok and pharmacy won’t refill antidepressant either

[Dap1948 in reply to 1953bullard]

You could change your antidepressant. I take a small dose of mirtazapine for anxiety and depression. It’s ok to take with Azilect.

[1953bullard in reply to Dap1948]

Mirtazapine is also Contraindicated.

[Dap1948 in reply to 1953bullard]

Oh dear, are you sure. My doc has happily prescribed me both for years.... I’ve just done a search and have come up with this unreferenced quote -

.”...... in fact those meds only have relative contraindications...means you have to take very big doses of both to have problems...that combination is safe and used in fact by most if not all neurologist....I have used in my practice for years without problems....“

[Yardmom7]

Hello 1953bullard. I am still taking Azilect, up from .05 to 1mg. I had a severe reaction to Sinemet so I'm not sure where I'll go when I need additional medication. I do know as an RN that a very slow titration down is the best way to discontinue a drug. Good luck.

[Connie18 in reply to Yardmom7]

What was youreaction to sinemet

[faridaro]

When I started taking 1 mg Azilect, it caused a horrible brain fog so I was advised to reduce my dose to 0.5 mg which I did and felt better, but after 6 months started having daily headaches and gradually discontinued it.

[rebtar]

I take Azilect with mirtazapine and citalopram. My doc has no problem with it.

[PalmSprings]

I went cold turkey with consultation with my Neurologist (1 mg dose/day). I wanted to reduce brain fog. It did work for me. I had been on it for 5 years and it was expensive.

[1953bullard]

Mine had no problem with me and Zoloft until recently. I just saw this on web md: Taking MAO inhibitors with this medication may cause a serious (possibly fatal) drug interaction. Avoid taking MAO inhibitors (isocarboxazid, linezolid, methylene blue, moclobemide, phenelzine, procarbazine, rasagiline, safinamide, selegiline, tranylcypromine) during treatment with this medication. Most MAO inhibitors should also not be taken for two weeks before and after treatment with this medication. Ask your doctor when to start or stop taking this medication.

[LAJ12345]

If you decide to try mirtazapine try it a a dose much lower than the prescribed dose. My husband took it a few years. It seemed to be the cause of most of his PD symptoms. He became like a geriatric dementia patient sitting in a chair all day and sleeping most days, with frozen face. He weaned off it over a year but is unable to get off the last bit. But We have found that a fraction of a tablet actually works for him to help him sleep but doesn’t cause all the side effects. So I have had it compounded into 3mg capsules From 30mg and he has actually found that 1/6 of one of those is enough or 0.05mg is enough for him. It isn’t placebo as he tried going off that last bit and he had nasty side effects like not being able to sleep and extreme anxiety.

Next time I will have it compounded into 0.05mg capsules. That way he could always take a couple if needed. At the moment I have to weigh the powder with a jewellers scale and package into gel caps.