I saw my PD consultant on Tuesday this week and reported that switch-offs and Distonia are getting worse but mentioned I had put myself back on Safinamide, which now seems to be helping to ease symptoms.
He also wants me to go on Tolcapone 3 times a day. First however he has arranged for a liver function test, as the drug is reported to cause liver damage. If my liver is ok he wants me to start the Tolcapone. I feel uneasy about this, as if having a perfectly good liver, he wants me then to take tablets that might damage it. As a back up I will need to have liver function tests every 3 or 4 weeks, which says to me that liver damage is an issue.
Has anyone on the forum had any experience of or gained any knowledge of Tolcapone?
Or has anyone any views on my dilemma?
This sounds totally crazy to me! Putting you on a drug which may cause liver damage? As if you don't have enough to contend with!
I'm sorry but I have never heard of Tolcapone but thank you for raising alarm.
Now, in my experience, this post of yours will disappear without trace. If you can't stay on the top of the list of topics, you'll never get an answer to your question. Keep waving your flag and get noticed by posting and re-posting.
Tolcapone (or Tasmar) has been on the market for quite a few years, but was , as far as I recall, only available if you paid for it. The liver function tests put a lot of people off, but there wasn't much choice, now there is more, Opicapone is waitng in the wings and since the introduction of Stalevo (which contains Entacapone (other name Comtess), these COMTinhibiters have apparently proven their worth , a lot of patients seem to benefit from taking them.. I have recently started on Entacapone. There is no mention of regular liver tests in the patient leaflet, only if you would start to feel unwell there is a a vague suggestion to have a "general medical evauation, including liver function should be considered".. My experiencwe of this kind of advice ( i.e. regular checks like: blood tests , bloodpressure monitoring ,etc. ) in the leaflet is largely ignoredby GPs.
Ask the consultant why Tolcapone and not Entacapone? I seem to remember it is even .more expensive .
Finally there is always a payback with the medication. Some will l do more harm than others. I have come to accept this...........Best wishes,Kate
On my last appointment with Neuro(we i remember live in the same sphere if not same neuro?) i asked him for his opinion on safinamide, but he went on a tangent about stalevo and generic at that, I also wouldn't be at all keen on tolcapone, but I would like an opinion on Opicapone.
Perhaps PD UK could tell us about it??????????????, there was a thread recently about it, but very little info??.
Thank you for your input, it is very useful. I tried entacapone about three years ago, when I was on a much lower level of Madopar and my PD symptoms hadn't progressed so much. It didn't suit me and didn't seem to help in any way.
I see my GP next week and I will ask the question you posed, viz’ why tolcapone rather than entacapone?
Now symptoms have got really quite bad, particularly switch-offs and Distonia I’m prepared to try entacapone again but will hold off until I’ve seen how this Safinamide works (which is expensive) as since I have recommenced taking it there has been some marginal improvement. I'm on over a 1,000 mg of Madopar every 24 hours.
I read the reports from BB about the massive change DBS has made to her life. As I’m coming up to 80 that is not an option however.
From what I’m hearing tolcapone may be a bit dodgy.
Just read your input SA, nice to hear from you and very helpful as always. Interesting about your GP and his view of Safinamide. Yes PD what's the latest gen?
This has been a very useful enquiry. I've just gone on the site suggested my Mr (or Ms) Moderator, for Opicapone and it makes interesting reading. I small tablet a day compared to three a day for Tolcapone - No contest!.
