Rasagiline/Azilect intolerance? To stop or not to stop?

[ramotswe]

Has anyone here taking rasagiline/Azilect as PD primary MONOTHERAPY initially had nasty side-effects (flu-like symptoms, dizziness, headache, nausea and feeling sad etc.) but found those side-effects disappeared on continued use of the drug?

I have just taken my 14th 1 mg per day dose, and am wondering whether to stop taking it because of the intolerable side-effects, despite a modest improvement in walking. Feeling extremely sad is a new experience for me, and coincides with starting this drug. If I knew the side-effects will disappear soon, I might persevere with the drug. I do not take any other PD medication.

Help please.

[laglag]

First check with your doctor before stopping any medication. If you've been sick for 14 days I would definitely call your doctor. I've been taking Azilect for approximately 15 yrs and have not had any side effects, but everyone is different. I recently stopped taking it for 2 months, mainly because my delivery didn't get shipped to me on time. I had thought about stopping it because I didn't think it was doing any good, but after a couple of weeks, I noticed a worsening of stiffness, slowness and mood. I'm back on it now and feel much better. Hope your side effects are only temporary. 🥊 Keep fighting!

[ramotswe in reply to laglag]

Good advice laglag, Thankyou. Had another new symptom this morning - think I'll quit before I end up face first in my porridge after 'sudden sleep attack'!

[park_bear]

Rasagiline/Azilect only helps a little. No point in putting up with these awful adverse effects for a small gain. In some cases the body might accommodate, but in other cases it may only get worse.

Inform your doctor you cannot tolerate these bad effects and get something different. I suggest a time-released levodopa preparation.

[ramotswe in reply to park_bear]

Thankyou Park-Bear. Sound sense. Do you use time-released levodopa?

[park_bear in reply to ramotswe]

Yes I do – generic carbidopa levodopa ER. For details of the difference between this and the immediate release version see:

healthunlocked.com/cure-par...

[faridaro]

I've had a terrible brain fog when started on 1mg azilect. My doctor suggested to half it and on 0.5mg I started feeling better. However, after 6 months I started experiencing daily headaches which rarely had previously and was advised to discontinue. Also, I've seen someone's comment that they felt better on Azilect than Rasgiline, which is generic, so if you have a choice of switching, something you may want to consider.

[ramotswe in reply to faridaro]

Yes, I've had the headaches - they come suddenly, go as quickly, then come again with piercing pain.Thankyou for that. I chose Rasagiline because it was described as 'gentle' by the doctor!By the way, as I understand it 'generic' - correct me if I'm wrong - means a drug which has the same ingredients as the original (say Azilect). Maybe the difference experienced by some PWP is due to different excipients?

[Smokeypurple in reply to ramotswe]

The pharmacist told me that while the active compound is chemically identical the fillers and coatings used can differ which can lead to problems with one but not the other.HOWEVER she did say that about 14 pharmaceutical companies make rasagiline and use different fillers etc - so although Azilect is off the table here in the UK, if I reacted to one she would try other makes and try to isolate the problematic component.

[alaynedellow in reply to Smokeypurple]

When i lived in uk was prescribed azilect

[ramotswe in reply to alaynedellow]

Thankyou Alayne.Good news!

[faridaro in reply to ramotswe]

Yes, the brand and generic versions are supposed to have the same amount of active ingredient but there could be a big difference in excipients. Here is a good article regarding inactive ingredients :sciencealert.com/scientists...

[alaynedellow]

I had always taken azilect brand but when changed to generic ragasilene i felt awful- nothing you could really ifentify but bk on azilect the feeling rough disasppeared.

[ramotswe in reply to alaynedellow]

The excipients could affect the body's response I think. My version of Rasagiline called Torrent is made by about 14 companies in the UK and includes a FODMAP sugar. Maybe that has something to do with the flatulence side effect!But where can we get Azilect brand ??

[alaynedellow in reply to ramotswe]

Its s prescription drug. In france my doc days ' no substitutions' and i get azilect

[Smokeypurple]

Hi there

I am just 2 weeks ahead of you on my rasagiline journey. Before starting I had a good chat with the GP practice pharmacist. She said that one would expect it to stabilise in the body by 6 - 8 weeks and that during that time things could fluctuate.

I started on half a dose a day for a fortnight and have just finished 2 weeks at full dose.

I have certainly noticed fluctuations. I had a hives type rash on my neck after starting, which abated and then returned when I increased dose. It has now more or less gone. Pharmacist says that she is not surprised.

My mood has certainly fluctuated. At both doses I have experienced a few days of old style me a few days in - bionic dynamic and happy. Sadly that was another one of the fluctuations and now I feel mentally worse - pharmacist says it is to be expected and by 8 weeks things should stabilise again.

So I'm going to give it 8 weeks at full dose before I decide.

I do have more energy.

[ramotswe in reply to Smokeypurple]

Please keep us up to date. I'd be very interested to know how you get on. BTW I presume you are not on any other meds. Thanks Smokeypurple.

[Smokeypurple in reply to ramotswe]

Will do. Yes, only Rasagiline...

[ramotswe in reply to Smokeypurple]

How's it going? I'm at 4 weeks and 2days full dose and a new side effect every day it seems. A minor uptick in my walk is probably placeboI'm ready to quit. What's your news?

[Smokeypurple in reply to ramotswe]

Oh dear it sounds like you are having a rough time. My experience is good so far. The rash has calmed down and I have more energy. I've just had a nasty bug for a week so am waiting to recover and see how I feel then. I've been on full dose for just over 4 weeks now and will definitely give it until 8 weeks - probably longer.I'm so sorry to hear it isn't helping your situation.

[buzbyc]

I started Rasagiline a couple of months back, and as it got into my system I developed significant dyskinesia's and had to reduce my sinemet CR that I was taking by quite a lot. Although things have improved dyskinesia in my left foot is still a daily problem and I'm thinking of discussing reducing from 1mg to 0.5mg. Having said that I'm reluctant to mess about with the drug regime after my bad experience last time!

I'm sometimes finding it difficult to differentiate between dyskinesia in my left foot and dystonia, which was one of my first symptoms. Any experience from anyone else would be appreciated!

[Kwinholt]

Hi there. I was taking Azilect for almost 8-9 years and my main side effect was the extreme tiredness. My dr actually took me off Azilect this past April and I expected maybe some withdrawal effect but there was none. I am scheduled for DBS next month so hopefully I’ll be able to cut back on the other meds as well after. Take care ❤️ Karen

[Despe in reply to Kwinholt]

So you were approved as a candidate for DBS! I am happy for you, wishing you the best of luck!

[Kwinholt in reply to Despe]

Despe, I finally got the seal of approval after all the testing. Started the process in June. I’m excited and nervous both. K

[Despe in reply to Kwinholt]

It is understandable, Karen. It takes a lot of courage and determination to have this invasive procedure. I hope you have the best possible outcome.

When is the surgery? Please keep us posted.

[Kwinholt in reply to Despe]

Despe, my first procedure (the leads in my brain) is November 18th and second procedure (device in my chest) November 23rd. It will be here fast. Thank you for your kind words and support. Karen

[Despe in reply to Kwinholt]

Wish I could give you my support physically!