I responded to Jeaner73, that, Yes my big battle is with that Simipex, last night 11-09-2023 we received a phone call from my current Neurologist, I'll be posting what that three quarters of an hour phone call has lead to.
Sunday evenings sleep 10th September ’23 amounted to around 3 hours off and on, I struggled to try and understand why my neurologist had in my opinion not listened to me or discuss with the wife and I my concerns in regards to my taking of Comtan, so I decided to express my concerns by sending him a voice tape.
Around 6pm on the 11th September my Neurologist rang, he apologised to me for leaving us with the impression that he hadn’t listen to the wife and I on our 1st of September ’23 visit to him. I told him that the Comtan I was taking I and the wife were concerned about what had been published in the report we had read, about melanoma and prostate cancer. That while the report stated that more investigation was required concerning their findings that showed PD sufferers had suffered with melanoma and Prostrate cancers while on Comtan, there was still a lot more work to be done in that regard, but warned users of Comtan, that they should know about this.
My Neurologist said that he didn’t think that there was a link with these cancers to Comtan and that, some men of around my age did suffer from Prostate Cancer even if not taking Comtan. I told him the following, When I went onto Comtan, I did not have any problems with my Prostrate at all, that it was some months after being put onto Comtan by him, that my prostrate problem came along. I asked him, ‘Can you tell me with all certainty that Comtan had nothing to do with my prostrate problems’? to which he replied, he could not give me that assurance!.
I told him that if he couldn’t confirm that Comtam had not played any part in my current Prostrate problems, then I would like to err on the side of caution, and not take it. As I pointed out, I’m 72 years old, I only get one shot at living here and I’ll never in my opinion be given another chance to come back, so you can see why I was worried.
He then got onto why I was on Comtan and that by taking it the problems that Simipex had caused me, he believed that Comtan would help decrease the problems I was having with Simipex. As I pointed out, when Neurologist #2 put me on that Simipex, he did not in my opinion follow the advice of the manufacturers of Simipex when it came to PD Sufferers and had he done so, when problems with Simipex arose we could have backed off on the amount being given to me to address the problems.
He agreed that he too did not like Simipex, and we spoke on how he had tried to get me off Simipex, which we did abandon because of the hell I was enduring at the time. So we have now come up with a plan to sort out that which currently drives me up the wall, Simipex.
We have two plans of attack, plan one is to,
(1) Keep taking Comtan, which he believes there is nothing to worry about concerning cancers. He thinks by doing so it will help reduce the withdrawal symptoms I face when we start chopping down, the Simipex in my system.
(2) We'll take the Simipex XR ER Tablet and reconfigure it into smaller amounts but still retaining the .75mg, by doing this we can chop away at the Simipex until it out of my system. Which I personally think is going to be a rough trot.
(3) That he believes that my current Madopar intake is too much, which is currently at 187.5mg. This we will reduce down to 125mg, keeping the 62.5mg capsule as a standby should it be required when we start to reduce the Simipex should problems arise.
(4) To set this process up all medications are now being taken every four and a half hours to see if any problems arise by reducing the Madopar in take.
Plan two, due to my concerns about Comtan.
It is pretty much as plan one.
Accept, I can if problems don’t arise by taking my medications out to every four and a half hours, plus the reducing of my Madopar intake, to stop taking Comtan. He has warned me that it is my choice to decide if I fear Comtan and don’t want to take it, because he believes that it’ll be a bit of a rough ride when it comes to chopping Simipex out of my system.
So that is currently where I’m at presently. Our telephone conversation lasted well over three quarters of an hour, and he did apologise for the way our visit to him on the 1st September ’23 had left me in a stressful situation.
So Here I go, I’ll endure all that will come my way, as long as that Simipex which has given me hell since it was given to me, is well and truly out of my system. I understand I will no doubt get feedback from some who have chosen to follow my battle that will not be favourable, and some that will be.
I don’t mind sharing my ups and downs with all here, when all said and done, when it comes to M TOW (Parkinson’s Disease) we the sufferers are all so very different with none of us being exactly the same. We all fight our own personal battles with it, we all react differently to the medications we are given to fight it, we are the experts on this disease, and my current neurologist has listened to me, the choice is now mine. Like all who follow my battle, we are all here in this life and get one shot at how long we live it, we don’t get a second chance to come back and have another shot at it.
Yes, I’m currently, 72andnotout.!
13-09-2023.
Staying up later than usual
How do you know when to go to emergency when PD symptoms are beyond erratic? 
What's in ER C/L vs. IR C/L?
