Hi ,

Newbie with his first post which I had hoped would be a giving one not a receiving one ! Unfortunately I'm in need of advice, the type of which can only come from fellow Parkies.

Basically I was on sinemet cr 200/50 twice daily + 8mg Requip xl.
I was undermedicated so at my Neuro appt I was advised to titrate Requip xl to 10mg for 2/52 then 12mg AND swap the sinemet cr for Stalevo 25/100/200 three times daily.

Move 1. to 10mg Req.xl went well and I got some benefit with impunity
Move 2. after 1 week on 10mg Req.xl started Stavelo. No difference at first
but at the 2 week mark I was in Parkinson's hell ! So much so that I
went back to sim.cr and was immediately better.
Move 3. At 2 week mark,after 1 week on Stavelo I upped Req.xl to 12mg
again no adverse reaction.

However, It's 1 month since starting this,in my opinion,crazy and cavalier
regime change and the last two days have seen me start feeling
dizzy,depressed,sleepy,slight nausea and my asthma flair up.

My questions are
1. Do you think my Neuro does'nt like me very much ? (haha)
2.Are my current problems due to the build up of Agonist or the coming down from the stalevo interlude, would it be worth battling on with 12mg or coming back down to 10mg and try again later.

I'm desparate to know peoples opinions/experiences re side effects in relation to time to onset, duration and time to start improving.

I realise we are not medically trained and can only offer opinions but it is my firm belief that there is greater benefit from fellow PWP's experience to be had than that from 'professionals'.
With this in mind, I would be most grateful for any response.

Regards & Best Wishes

Nigel
Yorkshire
England

have you posed your question here?
http://forum.parkinson.org/index.php...sk-the-doctor/

Might be one possibility for a different reaction to same medication:

"There are several brands of ropinirole available and your treatment could be affected by switching between brands. Each time you collect a new supply of tablets from your pharmacy, check to see if the tablets are the same as before. If they are different, discuss this with your pharmacist who will advise you."
as per info on http://patient.info/medicine/ropinirole

Hello Nigel.

My first few weeks of Comtan made some interesting side effects. Dizzy and hallucination. Not fun at all, but oddly enough after a month everything settled down a bit and I'm doing much better.

One concern is your Neuro made two changes at the same time. When I was under-medicated I increased Sinement 2*(25/100) in number per day. Once that was settled in, we add Comtan (Entacapone). Please note Sinemet + Comtan = Stalevo.

Glad to say my "white rabbit" hasn't visited in a while. He was friendly and sweet, but I realized wasn't real (I'll admit to looking under the bed to confirm he wasn't there).

I'm a big on tritrating (increase/decrease medication slowly over time.... four weeks when first starting something new).

Hi Bogusia,

I do get the same brand but this is something I'd not considered until you mentioned it. The link you gave also interested me as I've never come across a 'warning' such as that.....I guess that confirms how serious our meds are when the presence of different fillers etc can upset the apple cart.
Thankyou

Hi Tom,

Thats a great help and just what I was after. My Neuro is regarded as a Parkinson's 'Wizard' one can only assume from such a hard core adjustment regime that he must be the 'dark' arts type !

After 2/52 on stalevo I had random bouts of dysk. all day, which did'nt follow timings, I was so rigid I could'nt stand up properly and had to stoop + several other nasties but no white bunny !

So it took 1/12 to adjust to the comt.,which was administered separately and more carefully, no wonder I had a few issues.

Cheers Pal

Niggs,

I'm not a doctor, but I'd like to know:
- how long since diagnosis you are?
- what times you have been taking the meds?
- what do you mean by "Parkinson's hell"?
- did your doctor offer anything to combat nausea?
- did he mention rasagiline?

With so many different drugs, both before and after the change, it helps to have a common denominator. What's used in PD is levodopa equivalent dose. For example, in some ill-defined sense, the therapeutic effect of 1mg of Requip is equivalent to that of 20mg levodopa taken with carbidopa. (Note: these are just estimates, which vary from reference to reference.) Then you want to spread this out as much as possible to match your needs.

See the thread "Levodopa Dose Equivalency"
http://neurotalk.psychcentral.com/thread169655.html

Before

Time ? Sinemet cr 200mg = 150mg LED
Time ? Sinemet cr 200mg = 150mg LED
Time ? Requip XL 8mg = 160 mg LED
TOTAL = 460mg LED

After

Time ? Stalevo 100mg = 133mg LED
Time ? Stalevo 100mg = 133mg LED
Time ? Stalevo 100mg = 133mg LED
Time ? Requip XL 12mg= 240 mg LED
TOTAL = 639mg

As TexasTom pointed out titration is a good idea, as is changing only one thing at a time.

John

Hi John

Thankyou for your input.
I was diagnosed in 2009 after a long period of stress. Saw the neuro privately to get answers quickly. My request to be referred back to NHS Neurology was never processed and by default I ended up,my choice, under the care of my GP. I was ok on a mere 6mg of requip xl for many years though I did try several times to get to 8mg only to be thwarted by panic attacks.
Then my wife got cancer,we were almost bankrupt and I suddenly deteriorated. I started sinemet cr due to the problems with ropinirole. No problems at all. I then 12mth later tried again with 8mg requip xl. Interestingly John no probs this time.
Clearly things were getting complicated so I requested referral back to neurology and ended up with the current situation.

Nausea has never been an issue
I was intially started on Azilect which was quickly ditched as irrelevant by the
consultant and replaced by ropinirole.
By 'hell' I meant I suddenly found myself bent,unable to straighten my neck,could'nt turn in bed,get up,etc I'm rigidity dominant and felt like a statue, until I returned to sin.cr.

I take ropi at 8.00 am. 1st sin cr at 9.00am 2nd at 4.00pm

When on stalevo ropi same 8.00am then stalevo 9.00 am,2.00 pm, 7.00 pm

Nigel

Niggs,

As I said before, I'm not a doctor, but here are some points you could discuss with your doctors.

Your definition of your Parkinson "hell" is, in my opinion, consistent with being undermedicated. And the extreme nature of the symptoms is indicative of the therapeutic threshold not being crossed.

It varies from person to person, but for someone 6 years after diagnosis your total daily LED is typical.

I would reconsider Azilect. It has a small maximum benefit: 1mg has a 100mg LED. But it is a constant effect which helps to smooth out your total load. On the other hand, your doctor may consider this not worth the dietary limitations and "cocktail" effect of yet another drug.

Do your symptoms vary during the day? Ropinirole XL does not give constant effect. It will have its lowest effect just after you take the new dose, just at the time the Stalevo is also at its lowest. You may wish to consider taking half the dose twice per day. You should not cut these pills.

You may wish to discuss with your doctor why your doses of Stalevo are 5 hours apart. It may be worth changing to doses three or four hours apart, with a suitable reduction in the size of a dose.

Does the change of timing of the doses after the move to Stalevo give us a clue to what's going on? What time do you eat lunch and dinner? Does the protein in these meals affect the amount of levodopa getting to the brain?

As was said before, make sure any changes made are done one at a time and titrated.

John

John,

Thanks again for your trouble and time.

Not sure I'd agree about the extreme reaction to stalevo being due to undermedication. Your figures show a 40% increase in the total LED with the new drug regime,the manifestation of the extreme symptoms correspond with the introduction of stavelo and disappeared when it was withdrawn.
I would however agree that I am in general undermedicated and need a more gentle increase in overall LED with a smoother delivery curve.
You've helped me a great deal and it's much appreciated.

Nigel