I feel dreadful most of the time. I'm facing a ESA medical and need to get through everyday in some pain. I am not having a good time with this terribly debilitating disease but I wouldn't give up my DA's for anything in the world. I have managed to not gamble, not get overly sexual or do anything I'm embarassed about. DA's are not all bad.
A certain percentage of people find their lives are unacceptably altered by these drugs, and for them I have the greatest sympathy, but I need my drugs, let me get on with using them.
I am sure that ALL doctors are the 'good guys' and are trying to do their best!
I know this thread will be swamped by the people who, notoriously, swipe at DA use. Let's have an input from people who have found their drugs OK.
NOT EVERYONE IS OUT TO GET YOU!!!!
I have deliberately started this DA POSITIVE thread for the sake of balance.
It's good to discuss
I have been taking Mirapexin since April.
The low dose was fine, aches and pains in my legs went almost immediately. Increased the dose as instructed and the nausea struck, I felt so sick,had to go back to original dose and increase more slowly.
Back up and all ok. Then had to increase again to my 'maintenance dose'. OMG felt so awful all the time, stomach pains, nausea, exhaustion, felt like death. Had to take Lanzoprazole for my stomach it was so bad.
Eventually I spoke to the PD nurse who was fantastic, she said to cut back down to the middle dose again. I feel wonderful. No nausea, aches and pains mostly gone (Just left with the shoulder aches)and the tremor is much less noticeable. I have had no sign of any OCD or any psychotic incidences and I feel 'normal' again. I think I just needed to get the dose right for me! Just because the Neuro tells you to take a particular dose, doesn't mean it is the right one for you! Only you know how you feel.
Hi Spam, I don't think that anybody has ever said that DA's are not a wonderful treatment for PD. They offer those who are tolerant of them a new lease of life and I think we all feel that if they are prescribed people should take the opportunity to try them.
All we say is that you must be fully aware of the possible side effects and be vigilant to them. Believe me when I say the OCD effects creep on so slowly one isn't aware of them until too late, worst still if one has had no warning that OCD might be a problem. There are some neuro's out there that are still not warning people or taking effective measures to increase their patients awareness.
Good morning all.
Titan's insidious campaign to get everyone thinking, WRONGLY, that I believe DAs are BAD, and that I am plotting to take them away from people like some crazed coalition health minister seems to be succeeding.
Nothing could be further from the truth.
Ever since I've been here I've vehemently and consistently extolled the virtues of DAs, and strongly agreed that they are brilliant at improving mobility and reducing PD symptoms generally. I've genuinely lost count of the number of times I've had to correct people on this misconception that I am anti-DA (but it's certainly into 3 figures) after they've been persuaded to believe that those who are susceptible to DA OCDs for some reason want to deprive everyone else of their very effective medication.
UTTER POPPYCOCK! BALDERDASH!
There is nothing I would want to do less. 76% of DA takers get fabulous benefits, and at the same time are able to significantly delay the date when they will need to start L-Dopa treatment. Good luck to them!
If DAs were withdrawn it would not only make these good people's lives intolerably worse, but the increased demand for L-Dopa would deplete world stocks (and increase prices) significantly, creating a shortage which would directly affect ME.
WHY ON EARTH WOULD I WANT TO DO THAT?
NO-ONE is "Out to get you". No-one is "having a swipe at DAs". I don't know why people are using such emotive and inaccurate phrases, but they're not coming from me.
ALL WE ARE TRYING TO DO is ensure newbies are aware of the OCD risks and clues, because whatever anyone tells you MOST of them AREN'T getting the proper warnings they should from their consultants, and this is STILL causing horrendous problems for some of them downstream. We are also trying to track down and help those who have been suffering OCDs for YEARS, as the problems weren't understood when they were first prescribed DAs. There are still hundreds out there, believe me. I was one of them.
By the way, I disagree strongly with the bland and naive statement that "I am sure that ALL doctors are the 'good guys' and are trying to do their best!" There are good and bad doctors as in any other profession, or "competent and incompetent" if you prefer. The same goes for nurses - good and bad, dedicated and disinterested.
(My own mother died at 50 of brain tumours after years of agony caused by a lazy misdiagnosis, repeated every time the doctor saw her again. My wife's first husband had a body totally ridden with cancer, which successive hospital doctors "failed to notice" during several hospital stays. My father-in-law died of a heart attack in the hospital corridor and was found by a member of the public, after no-one responded to his pulls on the emergency cord. He was trying to crawl to the nurses' station.)
my o/h had psychosis on ropineral and although we were warned by our consultant that ocd may occur in the guise of,gambling and spending we were never told that my o/h would turn into a monster!!! we are fine now (i hope) reducing ropineral and getting him back to
normal!!! and i am so grateful to this forum and ray for all advice and experience. great for those it works for but soooo difficult for the unlucky ones that get awful side effects.
good luck everyone
You see, life CAN be nice again!
Resurrected i feel for your own DA indulgence and pre-occupation,look at the compulsiveness in what you are doing,it seems that way to me.Repetition,reviving old threads,dredging up old issues because they probably make you feel more alive/needed.
I hope you are content
Is it right that you exercise control over the forum like you do
So many disputes surround you
So many left empty in your wake
You really don,t understand or want to see it
Surfing my own wave of hope
Amy wanted a thread which was positive towards DAs, so I showed her this. Not rocket science.
Dear Ray and Titan
I am into my 2nd week of taking Ropinerole so no changes yet but I hope to post on this thread that I am doing well and that the Ropinerole is working for me and feeling the benefit.
If it turns out to be the opposite then I will post on the other site just to share my experience.
The point I am trying to make is that all of us PWP who are on this forum can see both sides of its effects thanks to the both of you and that you no longer need to keep resurrecting and exhausting the same old same old.
Please give yourselves a break.
Thanks for your concern Renee, and I hope your medication does you nothing but good.
The odds are on your side, at a ratio of 19:6.
Quote "Amy wanted a thread which was positive towards DAs, so I showed her this. Not rocket science."
So you've now taken on the responsiblity of starting/resurecting threads on behalf of other members?
I'm quite sure Amy is capable of starting her own thread if she so desires.
I agree with Rene in that its about time you took a huge step backwards and ponder on the real motivation behind most of your posts.
With regard to the thread title I have now tried 3 different D/A's, none of which produced any adverse side affects.
Making people aware of the POSSIBLITY of side affects is one thing, scaring the hell out of them and boringly keep banging the same drum is another and probaly not having the affect that you would wish it to be...long term
On a personal note i read recently in one of your posts that it took you up to 3 seconds to type one letter on your keyboard, considering how long some of your posts are thats a mighty long time you take to type just one post, just a personal observation i made, no harm meant by it
Apologies I didn't realise this post existed I was reading the other thread trying to get all the info I can about adverse reactions to da's, as I'm going to try one last time to get X to change his medication as he didn't seem too bad the last time I saw him, and thought people were posting other things on it because they had nowhere else to post - but now realise my mistake. I hadn't seen this thread as its not something I would look for or read as it doesn't affect me.
I'll just keep thrawling through and have more patience in future
Do I really have to explain the meaning of the phrase "up to...."?
Or about PD "on-time" and "off-time"?
No problem, Amy, glad to help.
I need to declare an interest here. Since I started this thread I have changed my medications to Stalevo ( a non DA ). but this is because the results of this new treatment is better for me. I repeat that I had no problems with DA and OCDs;
I still believe that DAs are not the nightmare scenarion painted by a few of our members.
Warnings of problems are great, scaremongering is not!
I dip rarely into the forum as generally it's such an unpleasant experience.
DAs gave me my life back - that's it.
RoS, if the number of people believing you are anti DAs runs into 3 figures, then perhaps this is indeed the message being conveyed, even if this is not your intention.
Please could we keep the threads separate.
Clearly the Justice system in Canada does not share your view as the attached report shows. http://www.thomsonrogers.com/sites/default/files/settlement-notice-to-users-of-permax.pdf
This is just one example of a growing number of "Class Action" settlements being made by drug companies. To date I'm aware of a number of settlements in at least 4 differant countries. However here in the UK, the legal system, law courts and medical institutions are running way behind the pace when it comes to this subject. I know for a fact Drug company Reps in the UK are being told to steer away from the subject side effects when courting health professionals for business.
What i find very interesting about this latest out of court settlement is that the Court considered the drug company in question had a case to answer right up to 2010. Does not sound to me that this is a problem confined to the distant past, as some forum members keep telling us!
Some people on this forum who have not been effected, may make all the right noises when it comes to understanding the pain suffered by those who were affected. However the simple truth is there understanding is hollow and lacks any real display of compassion or support. Maybe if they had lost eerything then they would not look down on us so much.
Whilst i don't agree with everything ROS says or the tone of how its sometimes delivered, i do applaud his continual efforts to keep this topic on the front page of this forum. Maybe when PUK step up to the mark and start delivering on some of there promises to raise awareness, then ROS can take a long holiday from this topic.