I'm recently diagnosed (February) and finding my way slowly. I do get frustrated because I feel slow, especially my thoughts, some days are quite good and then I go back down again. I want to do everything I could do before and don't want to give anything up. Maybe it's a control thing. I'm not on medication yet, resisting it!
Suggested by consultant that I take starter pack of ropinirole (250 - 1 mg) but nurse wants me to go with ReQuip XL 2 mg so confused. Quite sensitive to medication generally especially sickness, any advice?
Hello and welcome. I too am recently dx in Jan at 46 yrs. However, I'm of the opinion to medicate appropriately from the start to get a quality of life back. I think life's too short to struggle on unnecessarily, but I appreciate not everyone feels like this. I started Azilect (no symptom benefits) so have added in Requip XL 4mg 5 weeks ago and feel like my old self with virtually total symptom control. Requip XL is a superior choice as it is prolonged release once daily and so you get no gaps in its efficacy between doses. Good luck.
Hi Soulmate - welcome aboard.
I`m with Silverskins on this issue - life is too short.
I was diagnosed last year and I too was reluctant to start medication.
When I voiced my concerns to my GP, he told me that in his opinion there was no medical benefit from delaying the start of treatment and there was some evidence that delaying it for too long could have an adverse effect in the long term.
No doubt there will be others on the forum who will advise you otherwise.
My advice would be to trawl through the forum (there`s a mine of information on the subject) before you make a decision.
Welcome, soulmate. I was diagnosed in December (age 56) and saw the neurologist in January. By that stage, my symptoms were troublesome enough that I didn’t consider not going on medication. They were relieved almost instantly by a dopamine agonist similar to the Requip XL (Sifrol ER = pramipexole).
That said, I was alarmed that my neurologist kept upping the dose each time I visited. I discussed it with him and now I am taking the minimum dose that relieves the major symptoms, such as walking, driving and writing. I still deal with muscle tension, slowness and some tremor, but feel much better than I did back in December/January.
I like the slow release tablets as I am not tied down to an exact time to take them, but I do try to take them around the same time each day.
At a recent conference I attended, the speaker suggested that if no medication is taken, then the brain is retrained to deal with the symptoms, and that was regarded as a negative.
go with the nurse. requip extended will give a much smoother dose avoiding the roller-coaster ride of 'normal' requip. you have a good pd nurse there ie one with practical experience independent of the neuro - listen to her.
you have a chemical deficit - it can only be remedied by replacing the chemical.
I too have a fairly recent diagnosis (November 2012 at 57). I take 8mg of Requip XL and it does stop the hand tremor, help the shoulder and has given me back my handwriting. You may need an anti-sickness tablet such as Domperidone for the first couple of weeks until you get used to the dosage. My life is much better for taking the drug. Hope this advice helps.
Hello Soulmate, and all
Yes, definitely agree with the “medicate now” line. Of course you want to “do everything I could do before and don't want to give anything up.” I don’t think any of us would promise you can get 100% back - my drugs haven’t stopped my tremor, which makes typing difficult, but have improved practically every other area, motor and non-motor. There’s no point in struggling on when you can get that sort of improvement (if I’d realised that a couple of years back I wouldn’t have waited before making the first trip to my GP).
Let us know how you get on.
We would, in hindsight, 15 years ago, not have opted for medication straight away.
OH was 46/47 and had very little symptoms that affected their daily life, just a small tremor in their little finger. However, we thought we were taking the opinion of an expert and started meds right away. Within 18 months OH was on the maximum dose of Requip, 24mg.
I then researched this and asked to be referred elsewhere, this was quite a few years later. The Requip was reduced over a period of time to a dose more acceptable with the length of diagnosis and symptoms.
In our experience, meds could have been delayed for maybe 2 or 3 years until they were necessary to maintain the same quality of life..............maybe, just maybe they would have had a longer period of effectiveness life now, if we had decided on this; but who knows so, only you can make that decision.