I was diagnosed around a year ago now and what a year it’s been. I just wanted to say hi to all as I’ve found the forum very comforting when the inevitable spirals come and go.
I, like many it seems had a painful arm/hand around 4.5 years ago and had always hoped that the trapped nerve route was the end of it. There was a period of a few months where MND was being discussed which does nothing for stress levels!
My main issue is with my left hand that has no dexterity left but still works as a lifting and carrying tool at least. My left leg now seems to be very slowly getting stiffer and less flexible so my foot slaps slightly but apart from that I’m carrying on as ‘normal’.
After speaking to my neurologist this week he’s suggested I consider Rasagiline as a mono therapy when I’m ready in the hope of making exercise and daily tasks a little less taxing.
I’m absolutely terrified of Dyskinesia as it feels like the end of my career so I’m trying (and failing) to work out a treatment plan in my head to avoid it for as long as possible/ever?!
Could anyone share their experiences of Rasagiline if possible? I know we’re all different but knowing where to start with this would be useful I think.
Welcome to our community forum. You’re sure to hear from our group members with regard to their experiences with Rasagiline, but in the meantime we would suggest having a read of this page of our website: MAO-B inhibitors (rasagiline, selegiline, safinamide) | Parkinson's UK. We’d also urge you to have a search of the term for more information, using the simple search feature. And of course we have a free and confidential helpline on 0808 800 0303 staffed with advisors who would be happy to assist with a range of services.
We hope these resources can be of use, and we offer our warmest welcome,
Good morning AndNo_1 … I am 70 & was diagnosed with Atypical Parkinson’s in June 2023 having had symptoms for a number of years. I was put on
Sinemet [co-careldopa] around about 6 months ago. I have gait freezing & mobility issues. Both my hands & arms are strong & work normally. I also have neuropathy like a lot of Parkinson’s patients do [up to 55%]. Neuropathy make my legs feel very heavy. painful & numb & my lower back uncomfortable. I struggle to walk more than 100 yards & am not comfortable doing so.
I saw my experienced Parkinson’s nurse 3 weeks ago & he prescribed Rasagiline which I have been taking for a week. Since I started my legs felt a lot heavier but I am better today.
Rasagiline prevents dopamine metabolism irreversibly, thus increasing levels of dopamine , the result being a symptomatic benefit in patients with PD. It has demonstrated clinical efficacy in both early monotherapy and in advanced PD as an adjunct to levodopa.
Carbidopa-levodopa (Sinemet ): The most effective and well-tolerated drug the medical profession has to offer at this time is carbidopa-levodopa. It often helps with bradykinesia (rigidity and rest tremor). It generally does not help with imbalance or falls, freezing and non-motor symptoms.
I have not noticed any other downside to taking Rasagiline so far. I’m guessing it was prescribed as I had been on Sinemet for some time.
In medicine, clinical efficacy indicates a positive therapeutic effect. If efficacy is established, an intervention is likely to be at least as good as other available interventions to which it will have been compared.
What is the use of monotherapy?
Therapy that uses one type of treatment, such as radiation therapy or surgery alone, to treat a certain disease or condition. In drug therapy, monotherapy refers to the use of a single drug to treat a disease or condition
Thank you for the info, I’ll dig a little deeper into all of the ins and outs. Like everything else it seems to have such a varied impact from person to person
Thanks Steve2,
There’s definitely a good deal of neuropathy going on - I have been battling sciatica for about a year now and I’ve found that sitting on a heat pad massively helps my pain & walking. Amitriptyline helps me too but it also completely knocks me out like a sleeping tablet so I don’t use it very much.
Hi @AndNo_1
I took rasagiline as a monotherapy for the first two years after I was diagnosed with no noticeable side-effects - but also with few noticeable benefits except that I became a lot less anxious. I then added sinemet which worked well for a while but after another couple of years I did develop dyskinesia so had to cut down. I’ve recently had DBS surgery which has allowed me to cut down on the medication but still control the symptoms (in particular tremors).
That sounds a bit like I’m expecting things to go Clare. I don’t really have a tremor at present and only get it very slightly when I’m really anxious but it sounds like the 5 year to dyskinesia story I’m worried about. I guess I keep hoping to read that people have gone for 20 years without it but I probably need to come to terms with that not being the case.
I had an interesting chat with my Neurologist in Bristol regarding DBS and they’re going to be offering adaptive DBS next year which looks great (brain surgery aside).
I had my original DBS fitted at Addenbrookes, Cambridge. Having moved away from their catchment area my Battery needed replacement & the long & the short of it is that I had a rechargeable battery fitted at Bristol. My wife plugs me into the mains every week. LOL Seriously, she doesn’t but I do recharge my battery every week after transferring the charge to my battery. Having the DBS done at Bristol is scary but you will reap the rewards afterwards, so give it serious consideration.
Hello AndNo_1, I was on Rasagiline for the first year after diagnose and as Clare said, no side effects, but also no benefits. My neurologist doesn’t want to put me on C/L because, as he said, “90% of patients develop dyskinesia after 5 years”, than he paused a bit and said “I’m lying, everyone. Yes, you will feel almost healthy for a first time, and then for a few years you will curse me”. So I will try to avoid C/L as long as possible
So I will try to avoid C/L as long as possible