Hello spam95, Ive been following your blog and have found it interesting. I just wanted to say that I have been taking Naproxen(500mg twice per day) for my stiffness for about 8 years. 3 months ago my new neuro said he thought that I should come off it because he was worried about the effects on my liver. He also referred rheumatologist, he thought it might be rheumatism and not the pd.I waited 2 months to see the specialist and during that time took no Naproxen. What a nightmare!!! With taking the meds for 8 years my stiffness had obviously deteriorated but the meds must have been masking that. The pain was awful I was so stiff I couldn't walk and every movement was excruciatingly painful. By the time i saw the specialist I was in a right state, however I saw the rheumatologist who said it isn't rheumatism and that she could not prescribe anything better than Naproxen. She went on to say that with a condition that requires a lot of regular medication that one cannot function without, the decision to take certain drugs must depend on what quality of life that I wanted. She advised taking only one Naproxen a day to help minimize any damage to my liver.

This little exercise was the first time in many years that I had completely stopped one of my meds and believe me I wont be doing it again. Anyway I think Ive taken the long road to telling you that the Naproxen works for me. I hope that I havn't bored you to bits?

regards
Glenchass

Not bored at all, Glenchass, and interested in the alcohol problem. All I can say is that PD is a strange and weird experience. That's why I'm coming off the meds. To see what is working and what is not.

Thank you for following the blog, I'll keep my end of the bargain for the next little while.

It doesn't seem to be very exciting to me because, in effect, nothing is happening. But this isn't over till I,ve done a few months off at least

Cheers for the support

http://stoppingpddrugs.blogspot.com/

Chris

Hi Glenchass
this lead me to your post on parkinson uk.
i was doing abit of research last night in early hours and i was yesterday given by my gp naproxen to help me with the pain ans when i read the patiant leaflet inside also help with stiffness.
i take 3x250mg daily and last night i will admit i was,nt in pain or has stiff an mobility alittle better until middle of the night then i took something stronger as i only take naproxen in the day.early days.anyone else trying these meds and found any benefit?

Hi spam

How goes it? Any news? Am so very interested in your experiment. There is no doubt that o/h has developed unpleasant side effects from the meds and we are constantly debating whether or not to wean him off and test the water so to speak.

It seems he is one of the unlucky ones for whom treatment may not be helping at all.

Hi all

Just a quick update to tell all that (drum roll!!!)....nothing's changed! I feel no difference now I've been off the drugs for a few weeks. I'll continue with the blog at

http://stoppingpddrugs.blogspot.com/

but I expect nothing to change.

Best wishes to all, particularly those who have been reading the blog.

Chris

Hi spam

I forgot about your blog and read it soon after I posted. Will continue to do so.

Good luck

Hi Spam,
reading your blog,interesting to see how it works out.i will keeping following your blogs and good luck with it ,you,re very brave and i applaud you.
take care

I'm not brave. I had no choice as to whether or not to stop these tablets . I was so confused as to what was the symptoms of the disease, the side effects of the drugs and the mental state of my head. I HAD to clear it up, if only for myself. If, by chance, some others get some good from it, that's cool. But I'm not being particularly altruistic.

As it turns out, I'm not mad.....yet!! (Cue maniacal laughter!)

Thanks for following

Chris

Hi Spam 95
I was attempting to post on your blog but didn't understand the request to choose a profile so here we are.
Have been following your posts on PDUK with great interest. I have derived great benefit since my dx 20 months ago from the low dose three tabs of sinemet I am on. But I have resisted the neuro's suggestion that a spot of D.A. would help in spite of the fact that I have clearly stated that I am functioning better than OK even with my occasional right arm tremor. My drug of choice is exercise - mostly walking but also Yoga and Zumba. About 6 months ago the neuro suggested a spot of Rasageline (Azilect)which may or not have neuroprotective effects. My doctor was of the opinion it was one of the many things which come and go and no need to take it if I didn't want to. After the last neuro appt.I now find that presumably as a result of his letter to my doctor some other doctor in the practice has added it to my repeat prescription. As I am 71 I have to be particularly vigilant as over prescribing to the elderly (what me?) is still too common. My mother never took any of the many pills she was prescribed over the years and was nearly 100 when she died and was taking no tablets at all I now suspect that she had Parkinsons. I believe it is known that an overlarge amount of any Parkinson drug can produce the same symptoms as underprescribing but my impression is that this fact does not always inform what they do - I would like to think I am wrong.
I wish someone would suggest your course of action for the mother of an acquaintance of mine dx at the same time and the same age who is already on loads of tablets and not doing that well under the care of a geriatric specialist with "a special interest in PD"

Your neurologist sounds nice and no doubt you will together eventualy find the right drug for you - it takes some people rather long time. I have been lucky in how things have gone so far.

Best wishes and thanks for your posts and blog


Best Wishes
Eileenpatricia

Well done, Eileen, for resisting the unnecessary drugs your neurologist is so keen on prescribing. It is so important that the patient is well informed, especially with this condition where there is only symptomatic treatment. After all you have to live with the symptoms AND the side effects and you're the only one who can assess their impact on your quality of life. It is somewhat disappointing that a lot of doctors seem to ignore the "elderly" warning on prescriptions. I find it hard to believe all doctors are keen on drugs and they all think side effects are always acceptable.
The mother of your friend is entitled to be seen and treated by a neurologist according to the NICE guidelines on PD treatment. You could argue, though, that a geriatrician with special interest(and knowledge?) in PD is preferable to a general neurologist...