orphenadrine.

[alanrob]

has anyone took or taking orphenadrine for the pd tremor and did they find it effective?

[allofatremor]

I don't know about tremor, I have read it is widely used for RLS (restless leg syndrome) which even I get and I don't have PD. My OH had a bad tremor (Diagnosed 14months ago), after various meds added 3monthly it seemed when he was given the Neuro Patches we just laughed out loud one day as we realised the tremor had stopped and we had not noticed it was weird but WONDERFUL! not had tremor for a few months now, just hope it stays that way,

regards x

[alanrob in reply to allofatremor]

the neuro patch is one of the few meds i havent had i will ask my consultant about it and why i havent been given that option before.

[allofatremor in reply to alanrob]

It could be because of the side effects ???? We were given lots of advice of what can happen, its like anything else there could be effects. Apparently with the patches some PWP can start doing impulsive things like gambling, drinking, sexual behaviour issues, spending all their savings, just to mention a few, but this is not extremely common as far as I know, my OH is doing fine so far just keep positive, life's all about taking risks anyway, regards x

[Norton1 in reply to allofatremor]

Hello Allofatremor

Interesting about the Neuro patches and elimination of the tremor. Does your OH still take any other medications?

Regards

Norton

[allofatremor in reply to Norton1]

Hi, My OH was started on Sinemet by his GP, but did not do much for him. We then went to see a private Neuro, who said he would have him back to 95% himself in 12months. He was put on Stavelo, (which is carbidopa/entacapone/levodopa ) one three times a day, after 3months he added an extra one (2 in the morning + 1 + 1 afternoon and evening) so 4 in all. Then he added Azilect one at night, then Neuro patches were added later on, one a day - started with 2mg for a fortnight, then 4mg for a fortnight, then 6mg from then on. Last seen his Neuro in February and has now been left to see when his leveling out time will be (wear off time) as his meds have been topped up for 12months until now (but tremor went after the patches were added) just hope he has no wear off for a long long long time to come. He is doing great now, in fact hes driving me mad lol, hope that helps.

[Norton1 in reply to allofatremor]

Hi allofatremor

Thank you for answering my question so explicitly with such a positive outcome. You write well and it is easy to follow.

Thank you.

Norton

[Norton1 in reply to allofatremor]

Hello again Allofatremor,

As you are probably aware the Parkinson's tremor is extremely difficult to treat, so I ask if you would enlarge upon the dose of Stavelo your OH takes now so those of us who are tremor dominant get a better handle on his dosage. Presumably, he takes a 1mg tablet of Azilect. Did his neuro explain why he takes this tablet at night as opposed to earlier in the day?

Thanking you.

Norton

[allofatremor in reply to Norton1]

Hi,

My OH takes 4 Stavelo per day 2 @ 8am - 1 @ 3pm - 1 @ 9pm + 1 Azilect

He applies 1 x 6mg Neuro patch each morning

Like I said it has taken him 12 months to get to this - something added or tweaked at each 3 monthly appointment.

I am going to ask his Neuro about the azilect (meant to ask on last visit!!!)

Because no matter where I look or what I read it seems PWP all take it in the morning???

Maybe its because he has it with (1 Stavelo at night) rather than take it with

(2 Stavelo in the morning) I will find out, but won't see Neuro now untill September fingers crossed all being well, regards x

[Norton1 in reply to allofatremor]

Thank you allofatremor for your detailed reply. Much appreciated.

Regards

Norton

[Norton1 in reply to allofatremor]

Hello again allofatremor,

Re the taking of Azilect at night. I believe one possible reason is that Azilect is supposed to make the dopamine stay in the body longer. Some PwP who have sljeep problems take one normal quick release tablet an hour before bedtime, then just as they get into bed, they take a Sinemet (if that is what they're on) controlled release (cr) tablet so that they still have Dopamine in their body for a large part of the night. Presumably, that is why your OH neuro said take the Azilect at night!

Did or does your OH have sleep problems either before he started taking medications, if so, what is his sleep like now?

Kind regards

Norton

[allofatremor in reply to Norton1]

yes he had sleep problems. lack of it, and not getting comfy, he sleeps well now regards x

[Norton1 in reply to allofatremor]

Thank you Allofatremor.

Regards

Norton

[honeycombe3]

Hi there, I took Orphenadrine for over 3 years for tremor & RLS with associated pain. My consultant told me he had received criticism from other professionals for prescribing it as it was considered old-fashioned. For me it was wonderful. I had no negative side- effects until halfway through the third year when I felt I was losing

control of my faculties. It was how I imagine the onset of dementia. Regretfully I withdrew from it over time & now have my memory back. I have tried it since then but it has ceased to effect.

[alanrob in reply to honeycombe3]

hi honeycombe,i have come across exactly the same attitude ie that they are reluctant to try me on it because they said its not used much for pd now and is as you say considered old fashioned,that kind of attitude annoys me they arent suffering with this illness so its easy for them to say that.

[honeycombe3]

Alanrob,

Thanks for that - all we can do is persevere. Praise be for consultants who are prepared to take a stand.