Changing from Mirapex to Sinemet

[tobykeith]

I was on Sinemet for several months and a new neurologist changed me to Mirapex. I have been on it for two moths and it is not working as well as Sinemet. I have read several reports that it is very difficult to come off Mirapex. Has anyone come off it and how difficult was it?

[fwes]

It doesn't have to be "either or", for many it is "and". I was on Mirapex for 2 years solo, and then for 7 more "both". Had some nasty side effects from Mirapex:

- poor circulation in my legs, leading to massive leg infection

- audio hallucinations, could always hear a radio voice talking in the next room

- falling asleep without warning, a couple of times while driving

- finally got off when my major arteries started to clog

My cardiologist exclaimed "This stuff is still on the market?"

My neurologist kept asking if I was developing compulsive behaviour (sex, gambling,...)

I was not, so he encouraged me to continue. I understand that those who become compulsive have a hard time getting off.

I was on 1 3 mg pill a day when I decided to stop. Tried 1 pill every other day for 2 weeks, tolerated that, and then stopped. No serious issues. It took about 6 months for the listed side effects to subside. Since I still take Sinemet and have no side effects, I and my doctor assign the problems to Mirapex.

Watch it carefully. I have been told that if you start getting some of the side effects, then others are likely to follow.

YOU make the decisions about your treatment. Doctors advise and should not try to dictate. I know of a man taking MiIrapex, who was driving on the interstate, cruise control 75mph, spontaneously fell asleep, and woke up off the road taking out hundreds of yards of fencing. Totaled his car. He had only minor injuries, thanks to the New Mexico desert. His neurologist advised him to stop driving! I guess that if you kill yourself, then it doesn't get counted as a PD statistic.

[attyj in reply to fwes]

Are you still using coconut oil?

[fwes in reply to attyj]

Yes 8T CO, and still on minimal Sinemet 25/100 x4 and Azilect x1.

[chirodoc in reply to fwes]

I too had serious side effects after 8 months on Mirepex (pramipexol) I stopped cold turkey and faced the withdrawel for several days

[Pete-1]

I wanted to stop Mirapex (also known as Mirapexin, Pramipexole and Sifrol) to see if that would clear my double vision.

In order to be sure not to develop Neuroleptic Malignant Syndrome (NMS). ths is unlikely but potentially lethal. It is necessary to stop taking this drug very slowly. That is over a period of weeks rather than days.

For me I found stopping Mirapexin exposed a severe case of RLS. This is particularly irksome as sleep is almost impossible. After a few days with no sleep the prospect of suicide seems quite agreeable.

During “normal” time I felt agitated all the time. Sit down – no bored, stand up, walk, sit down again about for a bit – no still bored, I know read the paper. No good can’t concentrate beyond the first sentence. Stand up again – can’t think of a suitably engaging activity so just mooch about feeling restless continuously - sit down, stand up, go in the garden, go back inside. Pick up thr newspaper again, put it back down again.

I stayed off the Mirapex for about 3 or 4 days then delighted to allow myself to restart again – ahhhh – sleep, wonderful.

The trouble people have stopping these Dopamine agonists is sometimes known as DAWS - Dopamine Agonist Withdrawal Syndrome

Stopping Mirapex is sometimes described as being as difficult as stopping “street drugs”

[leojohn in reply to Pete-1]

The agitation you describe is similar to what my husband experienced about 3 weeks after he started Azilect. (1mg). The weakness was extreme and in addition he couldn't walk,had difficulty breathing and had high blood pressure which was never a problem. (The previous day he had exercised and gone for a long walk as usual. He was doing really well.) I had compared his experience to coming off street drugs. I suppose the symptoms can happen after starting a new medication as well? Certainly it happened to my husband..whatever the cause. It certainly was frightening.

Has anyone experienced anything as severe as this?

Thank you

[fwes in reply to Pete-1]

Now that you mention it, I also had annoying double vision, which I did not attribute to Mirapex. Now that you have my attention, my DV is nearly gone (after 8 months)!

[Hikoi in reply to Pete-1]

Pete,

What gave you the idea that sifrol caused double vision? I have never heard that before.

Double vision is quite common in PD which makes sense to me because muscles work your eye though I'm sure it's more complex than that. Wiki says Diplopia can be one of the first signs of a systemic disease, particularly muscular or neurological

I remember a couple of occasions of double vision but none since starting medication.

How is your vision now?

[Pete-1 in reply to Hikoi]

Hello Hikoi,

How are you doing with things these days?

Erm, if I remmber correctly the idea of Diplopia (doube vision) was first mentioned in the information leaflet and also in one of the Parkinson's disease Society's information sheets.

I started to get a bit of Diplopia quite a while after Starting Sifrol. I take a generic form known perculiarly as Pramipexole. More recently, that is over the last year or so I have had Botox injections into my eyes. This was supposed to give me about 3 months without the Diplopia. Well I did get 3 or 4 days. And having the injections was unpleasant. Even with local anaesthetic. Around February 2015 I had an operation (with full anaesthetic) to adjust the muscls aound the eye which control movement in the horizontal and vertical planes.

About 2 weeks ago I had another operation of similar ilk. This has yet to settle and certainly the result imediately post-op was to make my Diplopia the worst that it has been. Since the effect of this type of operation cannot be predicted reliably my consultant has made his adjustments giving plenty of leeway to allow the desired outcome to emerge as the muscles adjust themselves further.

Anyway my consultant said the final result should be known after around 3 months.

I suppose if this treatment fails I shall have to consider waening off the Pramipexole. I'm not so very keen on that idea as having tried it before (I only managed about 3 or 4 days) I know how unpleasant the withdrawal is . In particular taking Pramipexole to treat Parkinson's disease, when stopped a quite severe case of RLS was exposed. This is bad because under these circumstancessleep is pretty well impossible. In my case I was getting RLS twinges from foot to torso and down to my hands on both sides upto every 15 seconds, variable with some gaps between twnges maybe lasting` 5 minutes say.

I have seen a few posts on HeakthUlocked saying they have had similar experiences. I suspect this quest for eyesight with objects appearing only singularly has quite a way to go before all posibilities have been examined.

TTFN

[Hikoi in reply to Pete-1]

Wow Pete that's quite a story! But I'm still no clearer about the connection you make between pramapexole and diplopia? Why would you have to come off it if the op doesn't work? Blurred vision is Listed as A side effect of many Meds including sinimet.

[Pete-1 in reply to Hikoi]

The patient information leaflet at the following link (section 4.8 Undesireable effects) medicines.org.uk/emc/medici... explicitly mentions Diplopia.

Parkinson's UK info. leaflet Eyes and Parkinsons only mention Visual impairements. The emc web site puts Diplopia in the category of common.

[BillDavid]

Could take both an agnost and Simemet. I take both, started with Requip, a different agnost and later added Sinemet.

BillDavid

[Kachimom]

I was on Mirapex for over a year it became nondefective doctor switched me to Sinemet he slowly took me off Mirapex and onto Sinemet. Getting onto Sinemet was the best thing I did for myself I went from not being able to hardly walk to walking very well.

[Hidden]

My advice from experience is to get off Mirapex ASAP, the side effects are ugly. I have been taking it as the last resort for my RLS, and put on 35 lbs in less than 9 months, and within 6 months both legs were and still are excessively swollen. This was prior to going on to Sinemet recently, for PD, and am praying that once on full dosage (I am very sensitive in the "gut" to meds) I will wean off the Mirapex.

Other side effects include shaky neck and jaw, which I have also.

If you google Mirapex you will see lots of ugly reports .... One comment sticks in my mind ....."Can't understand how this damaging drug remains on the market and is still prescribed by medical professionals".

[Espo]

This may not address your specific question, but I went from 1.5mg Mirapex ER 1/day, to 0.5mg Pramipexole 3/day, with no noticeable change, except for a major cost reduction. PDF (Parkinson’s Disease Foundation, pdf.org ) website has a full description of each PD medication, including warnings about stopping dopamine agonists immediately.

Espo.

[fwes]

I am learning a lot from the replies to this post. Until reading the replies I was not aware that my double vision and chronic fatigue were also Mirapex symptoms (possibly). It has been eight months since I stopped using Mirapex and these last two symptoms have abated in the past month.

We are having trouble distinguishing between Parkinson's symptoms and the consequences of Parkinson's medications. Not surprising. I believe the medical community is also having problems making this distinction.

As I stated in another reply I am currently on 8T coconut oil, Sinemet four times a day and one 1 mg Azilect. My personal experience is that what I said get up in the morning and take just the Sinemet I have a slow start. My efficiency picks up significantly after the coconut oil with breakfast.. I often take the coconut oil and Sinemet together.

I still like Carbs and when I overdo carbs it significantly impacts my condition. It's hard to be perfect!

I still tire much more easily than a couple of years ago (I am now seventy-six). How can you tell whether it is advancing PD, consequences of medication, or advancing age?

Getting stronger in the past few months and I'm optimistic.

[Ray_rich44 in reply to fwes]

Have had PD for 5-6 years, take 1mg of Azilect and follow your CO regime. Why and how do you take the cinnamon? I do use a device called Lumiwave that produces infrared therapy and primarily helps with circulation. Also walk 11/2 miles 3-4 times a week. Did I mention I'm almost 72. Live in Denver. For the past two weeks I've used Cannibas in the form of candy, I take 1/2 piece in morning (3.5 mg THC) and the other half in the afternoon, seems to help with freezing, but still in the trial phase. Would appreciate your thoughts.

[fwes in reply to Ray_rich44]

I do not take cinnamon although some claim that it helps. I dictated that piece and Dragon made a substitution that I did not catch, until your question. I have made the correction. Thank You!

[Pete-1]

Stopping Mirapex was very unpleasant, no, it was very very unpleasent . For more detail try searching for DAWS on the web. DAWS - Dopamine Agonist Withdrawal Syndrome.

Sinemet is much more efficacious than pretty much any other PD drug including Mirapex, the main ingredient is Levodopa.

[lupo4711]

I TOOK MIRAPEXIN 1,5 MG PER DAY IN CONJUNCTION WITH 25/100 L-DOPA/CARIDOPA 3 X A DAY. I CUT OF THE MIRAPEXIN COLD TURKEY. THE 4 WEEKS WHICH FOLLOWED WERE THE WORST EVER IN MY LIFE. I COULD NOT SLEEP AT ALL. HAD EXCRUTIATING BODY PAIN , COULD ONLY WALK IN SLOW MOTION, STIFFNESS ALL OVER. I REALIZED THAT I HAD BECOME A DRUG ADDICT MY NEUROLOGIST PUT ME ON 25/250 L-DOPA CARIDOPA 2 X A DAY.

I AM FINE NOW.......WILL NEVER FORGET THE WITHDRAWAL PHASE....I CRIED EVERY NIGHT UNTIL MORNING....GABRIELE