Hi As you will see I'm new to this site, I'm carer for my husband who was diagnosed in May 2001. To cut a long story short .... March 2009 it was decided by medical professionals AND BOTH OF US that he might benefit by including an Agonist to the 6 daily Sinemet Plus, as he was starting to fall over quite often. WE were made aware of the side affects and as usual we checked out the new medication on line. Pramipexole was introduced gradually over 9 weeks (increasing almost one tablet per week). We joked about some of the side affects mentioned BUT knowing my husband had never wanted to take any medication unless as a last result we agreed to BE AWARE. He started a new hobby in May as his balance was not too good he had just given up lawn bowls. By November I thought his behaviour was changing....easily spent money on things he would never have done before.....becoming almost obsessed with his new hobby.....and he had started to tell me that he was 'noticing women' more and didn't know why. Thank goodness we have always had a strong loving relationship and so I suggested to him that maybe there was a side affect to his medication ? As he had been taking Pramipexole for nearly 9 months he thought it would have shown up before now? As he has an appointment every 3months we were able to talk this through with his consultant quite quickly (we can always talk to them over the phone). It was immediately decided that the medication would stop gradually and a new drug would start two days later. Entacapone was introduced 1 daily for first week then 2 tablets for second week. Initially week one ok by week two tummy alittle upset week three forget any increase as extreme diarhia (spelling?)Contacted GP 'Oh take imodium with Entacapone many patients do'......tried with no change..contacted friends with PD who we found had suffered ditto....Contultant on holiday (friday back on Monday) stopped Entacapone immediately and it still took until the Sunday to settle down. So he hadn't eaten food from Tues evening until Sunday afternoon !!! Glad to say the consultant phoned us at home full Monday morning of apologies for not being on the end of the phone. Luckily we had spoken about the possiblity of any side affects before starting on this medication. We often talk about PD as OUR 'problem/disease'. Naturally he (pwp) is frustrated that he can't manage to do 'things' as he used to and I admit to getting upset that I can't make him better. It's all part of the process we have to go through......we're here for each other and always will be...(I pray). Glad to have found this site and will continue with any changes to our routine. Sorry this is a bit waffly.

Hi Ray

No progress - what's the saying, due to circumstances beyond my control ...... I've given up, I'm sorry.

Any

wenders,

I was glad(ish) to read your post. This is exactly the way these da's should be dispensed. In fact I would say it is the minimum prerequisite that BOTH carer and patient are involved in what to look out from the outset.

I went to my appointments alone and I was told to let them know if I was shopping too much.

The suffering I inflicted on the most precious person in my life didn't involve shopping.

She didn't know what the hell was happening. I just knew I wasn't me.

All I thought about was how I should be enjoying myself. Whats wrong with that? I took up fishing (not shopping).

Everyone was out to stop my fun it seemed. What everyone called living, I called a mundane chore. Like shopping, eating, visiting family and friends, going to work, earning a living, going on holiday, etc. Everyone it seemed was stopping me from going fishing. I deserved fishing. I should be fishing. To hell with them I'm going fishing.

Then it was poker. Whenever I won I would think it a shame and attempt to give the other person their money back, when I lost I'd be incredulous the other person took off with my money.

Then it was punding (building and re-building my computer) - it was my hobby. Endlessly tinkering with the thing.

Getting furious when I'd be told dinner was ready or the bank had phoned or some other nonsense.

I went back to my neurologist, alone. He asked how I was, I'd say fine. He didn't ask how my wife was, my bank balance, my support network of friends and family. They were in another town in tatters but I could stomp my feet, wiggle my fingers and get pushed about without falling down. So life was good. I was getting on with it, why couldnt everyone else?

I lost my business, nearly my home and nearly my wife. All in the space of three months.

I finally told my PD nurse that I was having relationship issues and I'd bought a few computer games and I don't really play computer games.

I dont really know if she recognised something in what I had said, but I was taken off meds straight away. Told I couldnt have anything for 2 weeks so that my system was clear. Then put on L-dopa.

All the behavior issues stopped. They hadnt been there before and now they had gone. The wrecking ball had stopped swinging.

Back then it wasn't listed on the insert about these side effects. In fact it was only when I reached my max dosage that these problems came about. So I had been on da's for about 6 months without any probs.

Four years on I'm still paying financially and will be for the next 20 years. There is no meds to cure this problem either.

Emotionally, well that will be forever.

WENDERS:

My story is similar to Eck's. I was diagnosed in 2000, and given DAs for 7 years. I lost my 1st family (my son, now 21, still won't talk to me), my home, my job, my cars and all my money, assets & possessions. If you follow this thread back you'll see the full story: £400k in debt; and if you include lost future income, I'm about £2 million out of pocket.

Ray.

ECK:

While I was on DAs I carried out a fraud to raise cash, and after I came off them I was charged with this and appeared in court. My barrister got hold of an eminent professor of neurology, and they successfully argued that the prescribed DAs (NOT ME) were responsible for the losses. The judge let me off, saying I could not be held liable for any debts I incurred during that 7-year period.

If anyone else now contacts me about money they say I owe them from that period, I just refer them to my judge's ruling: if they choose to ignore it and continue to hassle me, they could be in contempt of court.

If they're not happy with this their only other option is to sue the NHS, the pharmaceutical company or my consultant/GP. Not my problem.

Hi guys,Haven't been on for a long time hope you're all fighting the good fight.Sympathies to those feeling the effects of DA. I must put my handup and say my sex drive has increased but I'm not complaining,it was heading for oblivion before.Just to recap I have had PD for 6 years and I am on Requip 4 times a day at 3ml.
I have been very stressed of late and because of it been getting alot of muscular pain.Mainly shoulders and neck.My fear is,can it be me screwing myself up or is the jolly old pd going to another stage.
The GP checked my ticker/blood pressure to no avail.I am seeing my pd nurse who is very experienced in our disease. Also one questions the medication and I don't know if it has a less of an effect as time goes by.Any response to that?
I wish you all well and I'm off to Warners for a couple of days at Littlecote house in Hungerford.
p.s. With the wife of course,what do you take me for?
Regards
Alan

Hi BB.

I'm told L-Dopa loses its effect over time, which is why they like to give early-onset patients something else first, and save the L-Dopa for the later years.

I haven't heard of any other PD drug wearing off in the same way.

Have a good hol!

Ray.

Hi Eck & Ray

So sorry to read your messages and to hear just how severe these DA's can be in some cases. Our consultant was concerned at the effect the DA's had on hubby so they arranged for a clinical psychologist to visit us at home. He was so good at putting both of us at our ease and explained that in some cases (similar to yours)DA's can have a devestating effect. He was able to confirm that hubby did not have a major problem and he would not need to see him again (hopefully).

Hi everyone

Just a quick question probably a stupid one too. At what dosage does the changing begin. What i mean is when people start to become a different person how much DAs are they taking. Told you it was a stupid question. Im on 8mg of Requip XL at the moment and up to now everything is ok.

Mark

Not at all a stupid question. I found a change when the dosage of ropinerole increased to 9mg. Mainly a physical problem - being sick but also immense irritability. I nearly bit the head off the poor milkman. I am grateful that I do not have the gambling prroblem. My neurologist warned me of just 2 side effects - compulsive gambling & swollen ankles. I was bemused at the time but having read some of the stories