Has anyone had any experience of the drug trihexyphenidyl?

[sharong]

I have been given this to take alongside Ropinorole.

Thanks

Sharon

[srarndt]

I would recommend that anyone trying trihexyphenidyl would be well served to discuss this med in depth with their doctor and pharmacist. It is a commonly misused drug at the street level causing problems like exacerbating problems tha we Parkies might already be struggling with...like constipation becomind VERY severe and compulsive behaviors (esp. sexual compulsiveness as it is a disinhibitor and aphrodisiac... Just sayin'

Best wishes,

Steve

Bisbee, AZ

[sharong in reply to srarndt]

Hi Steve

I think the dosage might be critical

Just gettng through each day is my major concern

some side effects are more tolerable than ohers

thanks Sharon

[srarndt in reply to sharong]

Most good clinicians wiould set a patient on a slow progression until some desired outcome is reached. Most seem to start out at .5 to 1mg per day and gradually ramp it up from there taking care to closely monitor extrapyramidal side effects (MPSEs). There are lots of such side effects to watch for such as akinesia (inability to initiate movement) and akathisia (inability to remain motionless). Kind of an A to A list there, lol...

Personally the extreme constipation alone was enough to take me back off of it...keyword EXTREME

[Court]

I have been asking this question for a while. I was put on this drug a few weeks ago to help with my tremor - which it has done. People who have been taking it have stopped because of the side effects. I take a 2mg tablet cut into half twice a day. When I first started taking it I did notice my tremor at all. However, whether it is the extreme stress I am under at the moment or the drug not suiting me, my tremor has returned and is now in my right and left side. I had an appointment with my Consultant last week and was fine, this additional tremor is a new addition I could do without.

I know this answer is not much help to you, but it is all that I know at the moment.

[sharong in reply to Court]

hi Court

every reply contains a nugget of golden information. thanks

sharon

[froggatt55]

I was going to ask you about it Sharon but having read Steve's comments, I'll stay well clear of it!

I was interested because I don't know what Ropinirole does for me from a positive perspective - I know it's negative effect if I don't take it (like yesterday) - I don't sleep a wink due to RLS

Regards

Bob

[sharong in reply to froggatt55]

Hi Bob

what a good point

I do not know what normal is any more

sharon

[froggatt55 in reply to sharong]

Hi Sharon

You make an even better point vis-à-vis "what is normal". As I indicated in my response I forgot to take the Requip (Ropinirole) yesterday as I have been varying the times I take it (2X8MG) to see if I can gauge it's effectiveness but all I have proven is that I can't sleep a wink without it.

On reflection, I don't take any night time medication for my Pd and manage pretty well until 10.00 the following day - so perhaps it IS the slow release of the Ropinirole that is actually getting me through the night? I have been told by some medical people that it is between 6 and 10 hours after dosage that the drug is at it's most effective

I'll test that theory out tonight because I'm due to take the Requip in 20 minutes with my third dose of Sinemet. I have slept this afternoon and feel fine now so it will be a good test.

I'll keep you posted

Kind regards

Bob

[froggatt55 in reply to froggatt55]

Hi Sharon

Well I have slept the last two nights - fitfully on Monday night but better last night so it does suggest that the Requip has something to do with it after all

I'm still not happy with taking 16MG so I'll ask next visit to the Neurologist if I can try reducing it

This has given me the idea of us all comparing drugs, levels, timings, side effects etc - I will try and put a post together to see if there is interest in this

Kind regards

Bob

[Court in reply to sharong]

Could not agree more. I do not know what normal is any more. I sometimes feel I take so many drugs, I wonder if they are all necessary. I do trust my Consultant completely but I have Type 2 Diabetes, thyroid problems, spinal problems and the latest is B12 deficiency, for which I am having a course of injections. Somewhere in there is the real me!

[BMichalos in reply to froggatt55]

I sleep about 2 hours daily due to Ropinirole added to my drug medley. I take 2 mg 3 x daily.

[Susie01 in reply to froggatt55]

Bob,

My neuro first gave this to me, it did seem to help. Then he decided to stop it and added Requip which does absolutely nothing for me symptoms, just seems to leave me nauseated with a headache! Next he added Neupro patch, could not tell it did a thing for my symptoms but elevated my blood pressure like crazy!

Wish there was an answer, so tired of meds and side affects of them!

[froggatt55 in reply to Susie01]

Hi Susie

I agree it's a b.gger trying to find meds that work for you that have side effects that you can live with.

I am OK with Azilect, Sinemet Plus and Amantadine - it's just the Requip that bugs me but as you will see from my follow up to Sharon that at least I have slept the last couple of nights. I am going to ask my PDNS / Neurologist if I can try reducing the Requip but I certainly don't want HBP

Take care, and never fear, we will get some sort of drug cocktails sorted out for all of us

Bob

[roma]

i was prescribed this drug by a locum from new zealand and after having fairly severe side effects i checked in the parkinsons uk leaflet, only to find it is not recommended for use in the uk because the side effects outway the advantages

[sharong]

thanks roma

what dosage were you on?

sharon

[ozepook47]

I wrote this reply early in April. I have copied it to give a bit if background to the use of this drug.

ozepook47

16 Apr 2013

Trihexyphenidyl, also called Benzhexol, has the trade name of Artane. It is usually available as 2mg and 5mg tablets. It is an 'old' drug with 'anti - cholinergic' effects. Usually used to control the tremors. Quite effective but may have some undesirable adverse effects such as, dry mouth, blurred vision, difficulty in passing urine, lethargy, and, especially in the elderly, hallucinations and deliriums. Because of these effects, it is not widely prescribed in Australia (don't know about other countries). It has little effect on improving any other PD symptoms. From a personal view, my late father was on Artane for several years, quite a while ago, and he started to imagine people walking through the wall into his bedroom, and would sit in his chair and write cheques all day and asking my mother to post them off. She thought he was starting to get dementia, but after discontinuing it, all of this disappeared and he never had those symptoms again. He was managed on Sinemet and Comptan thereafter. Hope this helps!

[sharong in reply to ozepook47]

Thank you Oze[ook

Every bit of information gleaned is helpful

Sharon

[BMichalos]

Hi Artane has been discontinued a long time ago in SA and the states as I am informed.

[Marlenead in reply to BMichalos]

It is no longer marketed as Artane which is the brand name but it's still available under its generic name: trihexyphenidyl). I suppose it totally went off patent some years ago because it's an old drug.

[MGirardi]

I was prescribed this drug along with my Sinemet CR. After discussing with my Neurologist

I quit taking it because it was not doing anything. My Dr. just upped my Sinemet CR RX.

[MagicMax]

My neurologist prescribed trihexyphenidyl 2mg, 1/2 pill three times daily with meals. After 3 days, I was rushed to the hospital at 3:00 AM due to a very severe bright red itchy rash that developed all over my body, head, and scalp. After 6 hours on an I.V. and a shot of Benydryl, I started to feel better. The exact same thing happened to a friend of mine. We compared notes and found out that the drug is imported from China. Even with buying it from two different pharmacies, 35 miles apart, we both received this medication from the same importer. It definitely decreases tremor. If you want to try it, I would suggest starting with 1/4 tablet twice a day or less with food.

On a positive note; the new Carbidopa/Levadopa 50/200 mg Extended Release works well. I have hardly had any tremor, I can take one pill at 7:00 AM, one pill at 11:00 AM, one pill at 3:00 PM, one pill at 7:00 PM, and one Azilect at 7:00 AM and that is all I need. Much better than the 13 sinemet I was taking daily.

Requip (Ropinirole) 0.5 mg is similar to Mirapex. It made me sleepy. My neurologist lowered my dose to 1/2 tablet at bedtime that gave me enough to reduce my muscle pain, but not so much that I felt sleepy most of the time. I stopped taking it when I started on the new sinemet extended release, and all is well.

Just a note; Comtan gives most people explosive diarrhea. Sorry, not a pleasant thought, but what is with PD?

[Norton1 in reply to MagicMax]

Hello MagicMax, I found your reply helpful concerning the use of extended release carbidopa/Levadopa and Azilect. What I didn't quite get was what you meant by 'new', would you please amplify what you mean by that term as I thought you could get that dosage several years ago?

Regards

Norton

[MagicMax in reply to Norton1]

Hello Norton

Sorry I was not clear in my explanation of the NEW carbidopa/levodopa ER. Carbidopa/levodopa CR (Controlled Release) has been available for several years. When one first takes CR it releases levodopa into one's blood slowly so it takes a period of time before any benefit is realized. The slow release helps prevent an upset stomach, and stomach pain, but some nausea may still occur. The new EXTENDED RELEASE (IPX066) has several new benefits: including releasing some levodopa quickly, providing some immediate relief. ER provides about an hour less off time per day. ER requires fewer doses with fewer pills for each dose. ER provides more on time with less troublesome dyskinesia. Also, ER provides better management of movement symptoms. It is not perfect, but it is an improvement, at lower cost, and less bother tracking pills. I have been taking it for about three weeks without any nausea (that I did experience with CR and with regular sinemet. I did have some insomnia problems initially, but that problem has improved. You can learn more at: pdf.org/en/science_news/rel...

Sorry for the long explanation, hope this helps,

Wayne (MagicMax) making every day magical and living life to the max.

[Norton1 in reply to MagicMax]

Hello Wayne,

Thank you for your detailed reply to my question. I intend trying to get some prescribed for me. I enjoy reading your posts as you always have something interesting to say.

Regards

Norton

[Norton1 in reply to MagicMax]

Hello all UK PwP,

I have read through the report referred to in MagicMax's post on the new extended release carbidopa /levadopa IPX066. It is not available in the Uk on the NHS yet. There is still research to compare this with other medications to be carried out.

Regards

Norton

[sharong]

Thank you Magic Max

I can see why it is so difficult to prescribe to a PD patient. We all react so differently.

I am reliant on 14mgs of slow release Requip every day but the tremors still break through.

Sharon

[norham]

My husband only takes Artane ,he has Parkinson's since 1998 . DBS surgery 2004. He never handled Sinemet well the off times were always hard for him . Artane has been his choice for years. 1mg 4 times a day, evenings he takes a natural stool softener . Green Bay , Wi.

[Marlenead in reply to norham]

Did the DBS help? I have bruxism (teeth grinding). I don't know if it's because I abused Artane and now I am having the reverse effect of what the drug is intended to do or if it's the side effects of other psych meds that I have been on. I am fairly well convinced that it's an autonomic response and it's Tardive Dyskinesia. I started taking Concerta which is an ADHD stimulant med. It has caused the grinding to stop. Concerta raises dopamine levels in the brain. The movement disorder is a result of a depletion of dopamine. Therefore, I am convinced that it is Tardive Dyskinesia and it's autonomic meaning that I can't make it stop. But when I take the Concerta, there is no grinding. Why? Because my dopamine level balances out. Until I went on Concerta, I swear I was ready to do DBS. I couldn't stand living with it knowing that I was destroying my teeth and I couldn't stop it.

[Agnes07 in reply to norham]

My husband was on Tryhexaphenadyl...he was put on it as CONSULTANT did not see any improvement with co-benaldopa....it was like a miracle ....not only did tremors almost completely stop but he felt so much better with regards to energy and positivity.....he was sent to another consultant who was part of the team n she almost immediately took him off this medicine....we are now challenging his right to have this.....in madopar relatively low dosage but really doesn't impact on movements...

[sharong]

Thank you norham

It is difficult having PD but maybe just as difficult watching a loved one go through it.

My children treat me robustly still but do worry about me.

Interesting to hear these very different reactions to this drug

Sharon

[ma4PDcure]

I started taking trihexyphenidyl 2mg 3x daily this past April. This is an anticholinergic medication used to help relax and smooth out movements due to rigidity. In a way you can consider it as a muscle relaxant. With PD we have an imbalance of neurotransmitters due to lack of normal physiological dopamine. And so this imbalance leaves us with a normal to more available cholinergic activation whose function is to contract our neuromuscular system. This is why we get so stiff and rigid. So anticholinergic medications help reduce or block the actions of acetylcholine activation which in term helps relieve rigidity and thus smooth out our movements. Like all medications trihexyphenidyl [ Artane ] comes with potential side effects which can include: dry mouth, blurry vision, decrease ability to sweat [ not good if you exercise especially in warm weather], rapid heart rate, decrease respiration, constipation, ocular pressure [ not good if you have narrow angle glaucoma], dizziness, urinary retention, and much others.

Personally I could say that it helps relax my stiffness/rigidity to an extent. It may last about 3-4 hrs for me. I can't say it helps significantly but it does relieve my rigidity somewhat and so far I have not experienced much unwanted side effects, yet. Maybe some dry mouth only. My other PD meds include: carbd/levod 25/250mg 3-4x daily and comtan 200mg 3-4x daily. I was diagnosed with PD 9 yrs ago not counting ~1-2or3 yrs of previous notable but subtle PD symptoms before I saw a neurologist. Yes I was only 44yrs of age when I was diagnosed with PD. No family history of it. Needless to say, I do experience quite a bit of "off' stage with significant FOG and imbalances than before and my meds are lasting less times: 3-4 hrs as compared to 4-6 hrs as in the past. I have an appointment to see a neurosurgeon in June for consideration of DBS. Luckily I am one of about 30% or so of PD patients whose uncontrolled tremors is not a dominant feature. However significant FOG [freezing of gait] with imbalance is prominent when the effects of my medications ware off.

[Court]

I have been taking Trihexyphenidyl for about two months now and it has certainly helped my tremor. Of course, some days nothing seems to help, but these happen less often. I don't appear to have any side effects at the moment, but I am only on a 2mg tablet broken into half and taken morning and evening. Have just seen my consultant and she is happy for me to continue taking this.

I also am on Requip slow release but cannot take it at night as it keeps me awake. I don't sleep well anyway. Think as we are all different, it is just a matter of trial and error. The one thing I do is to take my tablets regularly whether I need them or not My consultant says this is important. I also take Stalevo and Sinemet slow release when I wake in night..

[Marlenead in reply to Court]

If you take it as prescribed at low doses, you shouldn't hallucinate. It's when taken in excess that it will happen.

[chiche]

This happened in Mendoza Argentina 1978:

Artane: real hallucination

I took Artane a friend gave to me. He told me it came from the local neuro-psychiatric hospital somehow. He gave me four Artanes that were, as he told me, more powerful than the ones been sold at the chemistry; so he said I should take just one. He was departing that evening to the mountains with a friend and two girlfriends. I was staying in the city instead.

I took one Artane and hanged around for a while in a big park. Nothing happened apparently, the only thing that I forgot that i took one Artane and had a second in the same place, drinking water from the same tap. Soon afterwards I realised I did it twice.

I remember i went to the centre, saw a couple of friends and gave the rest of the Artanes to them. I was euphoric and remember that walked and talked with them a bit in the main street and soon after separated.

I took the trolley home.. But after I sat I saw my friends again inside the trolley sitting around me, one next to me and the other one behind as I was talking with them as if they were there from the beginning but forgetting what happened before (that we all went our own separated way).

Suddenly after the friend sitting next to me disappeared. I looked back to the friend sitting behind while asking for the other one, when instead there was another person sitting in place looking and reacting at me with rejecting gesture. It was a total shock ( for the passengers and myself).

I understood and remembered that I took Artane and felt miserable in the trolley. But again I was speaking to my friends that were sitting in different seats, this time on the opposite side seats. i remember them talking as if to me or between them but when I looked or stared at them they would dissapear or not respond to me.

Sometimes I remembered i was under the influence, people was watching at me, But again and again I was falling into the hallucination and start seeng my friens again.

Then when I had to get off I say goodbye to them while standing and walking to the back door I saw the rest of the passengers were looking at me holding as distinct sing of disapproval on their faces as I never had seen before directed to me. Went off the trolley and walked home.

When I arrived it was late at night and I knew my father wasn't in and my stepmother was asleep. I went to the kitchen to eat something but I saw my stepmother was there and started talking to her; she was being as friendly as never before. But after a while as I turned my head the real stepmother appeared dressing pyjamas and a face that looked asleep but enraged, a completely different one. She was looking everywhere around as if trying to find someone hiding from her but very seriously, even underneath the table with fear and hate... she asked me "who are you talking with? and I said instantly: "with you"!!! Then she looked even more enraged and said, "oh come on you..!" as a menace and returned to her room.

I also talked about it with my other friends. Something similar happened to them, they got in problems somehow, one of them trimmed off his trousers with scissors because they were "uncomfortable". The other one never got out the centre because he passed all night chatting with "us", then suddenly losing us, then he was looking for us thinking we were all playing at hide and seek, then he was finding us again and so on.

The ones that went to the mountains told me a horror story happened to them as they would see people hiding behind the trees around their hut while they were turning their head, they were also hearing steps following them until they turned to watch directly and all disappeared, then again all night he saw and heard armed people hiding around, loading weapons to kill them.. The girls got asleep in horror while they kept awake vigilant all night until noon.

We were all having a similar effect, suddenly forgetting having taken Artane, and then suddenly remembering.. and seeing the scandal caused in the way.. I

[Marlenead]

I have had many hallucinations many times on Artane (trihexyphenidyl). When I discovered that it is very popular as a hallucinogen among Iraqi military police and schizophrenics, I decided to give it a try. I was in a position to have access to getting it. I have had many different kinds of hallucinations and dissociative experiences on it. I would see actual people unlike LSD or other similar forms of acid where I would see shapes, colors or things melting. But Artane actually had me seeing real people with difficultly distinguishing whether they were really present or a hallucination. The one way that I could tell that they weren't real is that when I would talk to them, they wouldn't answer. That always made me angry and I would yell at them. If I wanted them to disappear, I would blink my eyes and they would be gone. I have done various types of hallucinogens, but by far, Artane was the best but I am tired of ultimately having blackouts and ending up in ER's, crisis centers or psych hospitals.

[BUZZ1397]

Better to just hit your thumb with a hammer repeatedly that use trihexyphenydyl. I know it was used in the past as an adjuvant for primary treatments. There are better things to do. If you want something OTC that will make your MAO inhibitor work a bit more effectively try a drop in the nostrils of phenylephrine. Just a drop! Do not do this if you are a idiot that over indulges in nasal decongestants.