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[daveyno9]

since i was dxd ifi nd that i am getting all sort of ailments a trapprd nerve in my back never had so much pain recentely ive had an infection in my face another painful interlude more pills it seems though that everything is blamed on the pd iwonder maybe all the meds fighting together one day im going to pack in all the pills & see just what happens

[CheriH]

Hi Dave,

You are not alone. I've had those same thoughts today wondering if the medication is hurting more than helping. Or maybe, my dr. just hasn't hit upon the right medication for me yet. It seems it's a trial and error thing; but it sure is tough on us to deal with. Hope you feel better soon.

[Jaye]

Hi Dave abd Cheri,

I've been posting on the boards for about 13 years now, and I can tell you that from the experiences I've read about and from what every doctor and pharmacist has said to me and to others, that is, to the best of my knowledge,, DON'T STOP TAKING MEDS SUDDENLY!! You can end up worse off if you happen to get the RARE reaction of Neuroleptic Malignant Syndrome. I won't try to medically define it, but you must not cut off your PD meds--and for all I know, heart meds or cancer meds or anything--all at once.

Now, assuming you are now terrified of doing that, please work with you doctor on tapering off if you're determined to do so. Doc can tell you what to start with and how fast to go. Please don't play around with your brain.

From what I've experienced, it takes a full year or maybe two to get your meds balanced, assuming you are at the beginning of your treatment. If you don't call your doctor, or visiting nurse or whatever, for help when you need it, or if that person seems always in a rush, doesn't answer calls, or seems disinterested, then GO and find your help in another quarter. If you can switch docs or get a second opinion, "fire" that inattentive one and keep going until you find someone you can work with. And don't let them get away with blaming everything on the PD. I won't bore you with horror stories, because most docs are working hard for us.

Learn as much as you can about PD and everything else you have so you can ask your questions clearly.

Oh, and I sympathize completely. I am going through chemotherapy right now, and my PD meds hardly work at all. Oh, well. Struggle we must.

All the best,

Jaye

[daveyno9 in reply to Jaye]

Jaye

thank you very much for your responce & concern really i was just firing off ive been dxd about 4 yrs its taken me most of this time to get used to the meds im on & my pd nurse is an angel i couldnt have managed without her its just that the whole situation makes me angry its my way of fighting back sincerely hope your chemo works regards Davey

[Pelley]

All truth be told......Your PD , Jaye's PD, My PD , all of our pD's are affecting each of use differently. That is the pisser about it. I can tell you from 10 yrs experience your body gets used to meds changes and accepts amounts taken with equal reactions. Not every body's reactions are the same.

Just when you think you have it right and everything is going well, expect some progression or extra stress etc. to screw it al up again.

Just go with it!

[PatV]

I know, I feel the same. Sinemet makes me swell. As in full of water. That puts pressure on anything that hurts. It's not helping that much any more either. Believe me, I am tempted to taper off on all meds.

[honeycombe3]

I wasn't aware that fluid retention is a side-effect of Sinemet.I only started it a few months ago ( mgs per day) with a view to phasing out Requip - due in part to fluid retention especially in the ankles & feet!! I think lower back pain & other muscle & joint pa\in may be due to the postural changes caused (in my case) by spasm & rigor in my left side. A contributory factor in my dx was the fact that as I sat with my leg raised in the evening I could watch my left foot move to a 'claw' & I could not stop it. My hand & arm were already clawed. This was in spite of alternative treatments & therapies. Please DO NOT come off meds without support from your medical team. If you can't get this from your consultant or GP (UK) then ask one of your PD organisations. As our PD is unique to each of us there is unfortunately no common path or pattern for treatment.