Alternatives to Sifrol and Stalevo

[andrewdebsmith]

Hi All, my fist time on this forum. I am 45 and have been on the above medications for 5 years. I am wanting to stop both as feel the side effects are now worse than the benefits, although i will need to see where i am haveing not stopped these meds before. As I understand it i can stop Sifrol straight off but must taper off the stalevo. Any advice would be appreciated,

[Pete-1]

Sifrol is otherwise known as Mirapex or Mirapexin or Pramipexole). This drug and a common alternative Ropinirole are of a class known as Dopamine agonists. These are the drugs associated with compulsive behaviours, gambling etc. You may be able to swap one for the other without having to tapper off but if you just stop taking a Dopamine agonist suddenly you may find this very unpleasant. For me stopping exposed quite severe RLS, I found I could not concentrate or settle down to do anything requiring any concentration. I just couldn't relax If I sat down I wanted to get up again, having got up I wanted to pace around but not with any objective in mind so I'd sit down again but that was unsatisfactory. On top of all this I just felt really peculiar in ways that I find it impossible to describe. Sleep is impossible if you have RLS which may accompany PD. and I found this lack of sleep started to result in suicidal thoughts.

So stopping a Dopamine agnonist is hard work. Some on this forum (perhaps mainly in the RLS community would say you need the hep of a doctor who can prescribe morphine and another drug whose name I forget just now. Having found out what I wanted I started to take Pramipexole again and was very relieved to do so.

Stalevo is only Sinemet with a COMT inhibiter, Entacopone. This is used to prolong the existence of Dopamine once used so that more is available for re-uptake and re-use. Sinemet or more specifically Levodopa that is the main ingredient in Sinemet remains the best drug available to treat PD. If Levodopa has been taken for a number of years and by then in quite large doses then that seems to result in dyskinesia and hallucinations.

These problems with Levodopa seem to appear when PD has progressed rather than anything to do with the drug. Taking lower doses helps reduce the dyskinesia and hallucinations but then PD symptoms will be less well controlled. May be this is a good time consider DBS?

As PD progresses it seems that the brain becomes unable to store Dopamine so taking a big but normal dose of Levodopa may be seen as an overdose for a short time but as none can be stored later will appear as a shortage. The brain needs to be able to match supply with demand.

[paddyfields in reply to Pete-1]

Quote from my trusty guide to PD treatments regarding dopamine agonists by Dr. David A. Grimes, PD specialist/author of the Canadian PD guidelines:, ..."these medecines should not be stopped suddenly; doing so can make symptoms significantly worse, and can even result in a life-threatening medical emergency called neuroleptic malignant syndrome". Are you sure that the side effects are not symptoms of the PD which is a progressively worsening condition? After a while with PD and meds., you become more liable to experience dips in dopamine level and if this coincides with the fact that you have just taken your next dose (which has not yet kicked in) a cause and effect can be attributed to the meds mistakenly. The usual caveat applies that I am not medically qualified in any way

Take care

[movinngroovin in reply to paddyfields]

DBS-DBS=DBS!! Had it on Nov. 5th of this year and can't say enough good about it-I am a new person and only one side was done so far!! Consider it -it took 5 years for me to finally take the leap of faith and boy am I glad I did! You must be the right candidate though--tremor, bradykinesia, and rigidity are what it takes care of. my exact PD RX. Now I take Carbidopa Levadopa twice/day and mucunna pruriens once/day. What a dream come true after 20 years of PD. The cure is coming within 5 years-I can feel it in my bones and the literature suggests it around alphasynuclein clean-up. See Michael J. Fox Foundation. Their seminars are online, free, monthly if you want to keep up with things. DBS is only a stopgap measure to the cure anyways which is enough for me right now!

[paddyfields in reply to movinngroovin]

Thanks for the encouraging post, moovingroovin. I have a negative genetic marker for alphasynuclein and PD 23and Me project) so am particularly interest in this avenue. Also apparently age (I am 75) is no particular barrier to DBS

[movinngroovin in reply to paddyfields]

My doctor will not do them past 80 years of age. There is too a higher risk for dementia onsetting or other health issues that might restrict surgery. SO- run or walk to your nearest, best qualified DBS neurosurgeon who does them multiple times/week and Great Fortune to you my friend!

[andrewdebsmith in reply to movinngroovin]

Hi Movinngrooving,

How are you going with everything 2 years down the track?

cheers Andrew

[movinngroovin in reply to andrewdebsmith]

Couldn't be better! Thanks for asking Andrew!

[andrewdebsmith in reply to movinngroovin]

That is great news, long may it last.

[Pete-1 in reply to paddyfields]

Ooh yes I forgot about NMS in my last post. I would like to add though that everything I have read regarding NMS and PD indicates only a small risk and is only a rare complication. That, of course still means you have to take appropriate steps to mitigate that minimal risk.

[paddyfields in reply to Pete-1]

Thanks for age limit hint - I'll have to give it some thought as my mother lived to 99 and my Aunt has just died aged 103. So, even though neither of them took any medication, I must plan accordingly I suppose. Obviously there must be a cut off. I am fortunate, if having PD can be said to be so, in that so far I have had quite a slow progression and have responded well to what ever meds have been offered.

Regarding the NMS, I mentioned it because although it is a small risk, the syndrome is pretty serious and probably not all well known outside the parkie world A few months ago, I had recurring problems over the escalation from 1 mg a day to 4 mg of the patches on my repeat prescription which together with finding wrong strength patches in the right packet when I got home, caused me to kick up a bit of a fuss as by now I was wearing my last patch I had to insist quite firmly that , no, I could not wait for the normal three to five day turnaround to process a new prescription. I suppose I could at my level simply upped the sinemet but I wasn't prepared to put up with dyskinesia just because neither the prescription clerk nor the pharmacy could not get their act together. One good thing came out of it. I am now allowed, even encouraged,officially (instead of unofficially) to have spares and I don't have to put up with little lectures from the assistants about stockpiling NHS drugs.

[Jocee in reply to Pete-1]

what is RLS?

[Pete-1 in reply to Jocee]

RLS Restless Leggs Syndrome. The following is taken from wilipedia.

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Restless legs syndrome (RLS) also known as Willis-Ekbom disease (WED) or Wittmaack-Ekbom syndrome, is a neurological disorder characterized by an irresistible urge to move one's body to stop uncomfortable or odd sensations. It most commonly affects the legs, but can affect the arms, torso, head, and even phantom limbs. Moving the affected body part modulates the sensations, providing temporary relief.

RLS sensations range from pain or an aching in the muscles, to "an itch you can't scratch", an unpleasant "tickle that won't stop", or even a "crawling" feeling. The sensations typically begin or intensify during quiet wakefulness, such as when relaxing, reading, studying, or trying to sleep Additionally, most individuals with RLS suffer from periodic limb movement disorder (limbs jerking during sleep), which is an objective physiologic marker of the disorder and is associated with sleep disruption. It can be caused by low iron levels

Treatment is often with levodopa or a dopamine agonist such as pramipexole. Some controversy surrounds the marketing of drug treatments for RLS. It is a "spectrum" disease with some people experiencing only a minor annoyance and others having major disruption of sleep and impairments in quality of life.

End of wikipedia quote.

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I always describe RLS twinges as being like an electric current surging through wherever the twinge is experienced. At its worst I have had twinges up both legs and down each arm simultaneously about every 15 seconds then variably every few minutes and then every 15 seconds again. I take Pramipexole as a treatment for Parkinson's disease. This mostly keeps my RLS in check.

The wikipeia quote suggests RLS is treated with Levodopa but that treatment is a bit out of date. Dopamine agonists are more effective. There are problems with this class of drugs though. Loads of posts in this community about those.

[JohnPepper]

Hi Andrew. Instead of giving you a fifty page response to your question, may I suggest that you go to my website and look up the following: GDNF; MAO-b Inhibitors; Walking; Exercise and Medication.

Yes there is something other than taking medication that you can do that will genuinely reverse your Pd symptoms.

My website is reverseparkinsons.net.

Kind regards

John Pepper

[Balderdash in reply to JohnPepper]

John you have had Parkinson's disease long enough to know the dangers of JUST STOPPING any medication.Yet once again you jump in with THE 'your book, your web page, your way'.

The consequences of someone's potential actions you choose to ignore.

I'm not intending to undermine the benefit some may get from your book and web page but doctor or not you know the dangers and fail to point them out.That is a shameful disregard of potential danger to fellow suffers and blatant self promotion.I Are you here as a salesman or a person living with Parkinson's disease.

[JohnPepper in reply to Balderdash]

Hi Balderdash. Guilty as charged! I cannot write everything contained in my book, here in this blog. So, to save time I refer to the book. Everywhere I have suggested reducing medication I usually say '"talk to your neurologist". I personally came straight off levedopa, which I only took for three months, without any problem, but that was MY choice. WE do so at our own risk. In my defense, I am under the impression that before going through DBS you are taken off all meds, just like that! If that is so, then it can't be that dangerous!

I am a person successfully living with Pd. The only thing I am selling is my book, but I give all the pertinent points mentioned in the book in this and other blogs, free of charge. I also have given away nearly a third of all books I have printed so far. That does not sound like a hard sell does it. I cannot possibly tell my story in less than 200 pages, and it costs a lot of money to write and sell 200-page books and maintain a website. All in all, it is an expensive trip I am on, but it has helped a hell of a lot of people.

Kind regards

John

[Balderdash]

You have been taking this medication for 5years,who on earth told you that it was safe to JUST STOP taking pramipexole also known as sifrol.What are your problems, what are you hoping to achieve, what alternatives do you have in mind, do you have a neurologist, doctor, nurse or anyone advising you.Most certainly there is no reason NOT to look at all other alternatives available to you, but you must do so in an informed responsible manner.Your very young and have a long way to go with this illness, it doesn't sound as though you are getting or seeking enough support..KEEP asking questions, keep looking for solutions.

[andrewdebsmith]

Hi Balderdash,

I will not just stop suddenly taking these medications. I am currently on the extended-release 4.5mg Sifrol tablets, of which i take 1 a day and i take 4 a day of the Stalevo 200mg/50mg/200mg.

I had very little tremor from the start and suffered from seizing up with first my left hand to the point . It moved to my left foot and now to my right side. I have a neurologist and it was with the taking of the above meds i have been able to function and work.

The reason i want to stop the meds is i need a point of reference again as even with the meds the spells are alot shorter where i function ok and i can't keep taking more of these meds. I feel that the benefits might not out weigh the side effects any more. I find my self shuffling, lacking a decent sleep, my eyesight has suddenly got worse and my teeth have required a lot of attention. Not really sure if it's natural aging or the medications. To top it all off i had a hernia op a few weeks back and have not done much exercise.

I am a father of 3 and have always been quite fit. As a family we eat reasonably well but are working to improve further taking in a diet with a lot more raw vegetables. I can't keep taking these meds in ever larger doses thus I am seeking alternatives. I am currently on holiday and tried to reduce the stalevo but found my self in agony both with walking with my foot curling up and doing anything with my hands a frustrating exercise.

Enough said. Everyone is dealing with something . I have a long way to go but want to try to stop this getting worse as after 5 years i can't afford to deteriorate at the same rate. I have to try as the future is not very rosy at this point in time,

Regards

Andy

[Balderdash]

Hi Andy,Ive had PD 10Yrs.Meds have increased three times in that time frame,but I do juggle the prescription to suit my needs.Ive reduced my meds in the last three months and have found the formula that works for me again,I don't work,I had a very stressful job and gave it up soon after diagnosis.I know you've a family to support and that's a stress itself at the best of times.You are right to review your entire situation.Is your employers are they supportive,are you happy with work.Its as important as reviewing your medication.Take care,good luck

[vivace1017]

To echo someone else's reply, DBS! DBS! I had mine done last October, nearly 3 months ago. While the system still is not regulated properly for me - I'm in the field test for Boston-Scientific's new Vercise system (Wow!) - I already know it is a powerful fix! I was on seven doses of Carbidopa/Levodopa daily, plus Eldipryl and ReQuip. Dyskinesia was already becoming a problem as well. When the testing phase is done (6 more weeks to go), I have every expectation that I will function as close to true "normal" as possible. So, find yourself a good Movement Disorders Clinic and go for it! Especially since you are so young.

[andrewdebsmith]

Thanks Vivace and everyone else who has taken the time to reply. Is it true they stop all medications (just like that) before DBS or is this merely John's impression as mentioned above? What was the lead up to your DBS surgury?

Regards

Andy