Advice needed please on "wearing off"


#1

Hi it is me Dolly....normally i love a good laugh and chatting to pals on the forum and helping others where i can, but recently i have noticed that my meds are wearing off much faster than they did and i feel rubbish (that is me being polite)!!!!!!!!! I have been in touch with the PD nurse and apparently there are meds that can be added to my Madopar and Requip XL to keep the wearing off to a minimum. I know everyone reacts differently to pills but it is pretty confusing. I have been taking Madopar for nearly 2 years and since October when they were increased from 3x a day to 4x a day have felt  pretty good. Now i find that instead of lasting 4 hours i am lucky if i get 2 hours before the symptoms return. There seems to be so many different meds with various side effects, i have been reading about Selegiline, Rasageline, Pramipexole, Amantadine, Azilect .......and i am unsure as to what the nurse is likely to offer me,  what experience  have you had with wearing off and extra meds added to help you. I would be so grateful for any advice please.....I am keen to get back to being Jolly Dolly  again....thanks 

Luv Desperate Dolly x


#2

Azilect work's for me but then so does avoiding protein within an hour of taking my meds


#3

Dolly,

As the disease progresses the brain produces less and less dopamine and gradually loses the ability to store it. To rectify this the meds are increased. It also becomes more and more important to spread out the delivery of the drugs.

You don't say what your doses are. But Kendo's advice of considering using rasagiline is good; giving an almost constant boost of the equivalent of 100mg/day of levodopa. If this is inadequate, starting on Stalevo may make sense.

Many of the options can be considered in terms of levodopa equivalent dose (LED). See the recent thread.

John


#4

Hi  Dolly

Your experience of wearing off sounds exactly like mine this autumn, also nearly 2 years, after starting meds. I assume you are taking 4 x 100/25mg Madopar. Same here, but I also have been taking a slow release Madopar at bedtime and usually have an additional 50/12.5 at about 4am, both to overcome restless nighttime legs.

About 5 weeks ago I added Entacapone to the 4 daytime doses, which immediately returned my on times back to between 3 and 4 hours. I was reluctant to add this, fearing side effect diarrhoea, but this has not occurred thankfully, the only side effect being bright yellow wee because of all the colouring in the tablets.

The symptom that none of these meds had ever really helped effectively is poor gait initiation and freezing and this autumn these had become much worse, presumably because my natural dopamine levels are reducing all the time. A few days ago I added a single Rasagaline to my morning meds, which some PWPs here have found effective for that. A bit early to tell, but as John says this works by boosting and levelling out the Madopar doses over the 24 hours.

By the way Azilect was the first med to contain Rasagiline. I have only been prescribed a generic, cheaper I suppose.

Best wishes in your search for Jolly Dolly

S


#5

Hi Dolly

I have been diagnosed for coming up to 10 years. Over that time I have been prescribed a variety of drugs to try to extend the length of time the levodopa remains effective. For me rasagiline didn't seem to have much effect but if I run out I feel the difference. I also take amantadine and have rotigotine patches which I have found to be the most effective but I know they can have severe side effects for some people.

I tried entacapone which I believe is one of the ingredients of Stalevo but found this gave me dreadful diskynesia. I'm now getting less and less 'on' time and am waiting to start assessment for DBS. Hopefully if that goes ahead I will be able to cut back on some of these meds and give my liver a break!

Regards, mrtoad.

 

 

 


#6

hi dolly

            i would suggest entacapone this as made a great difference to my ON times as well as supa & others this is what the med is exactly meant to do make your ON times last longer ! my nero also added after a couple weeks azilect ( rasagline ) . gus


#7

Mum had this problem and was put on Stalevo - But,  moving from Madopar on Friday and  switching to Stalevo on Saturday caused lots of problems. On a low dose at first but - it seemed ineffective - so they upped it and it was like she was a wound up spinning top and almost hyperactive! The dyskenesia was distressing for her and for me to watch. So, after a very distressing fortnight (from which I don't think things ever picked up properly from) she was put back on Madopar, with an extra day time dose and Madopar CR at night.

Then, again, things slowly declined and about a year later she was put on Stalevo again (I assume for the benefit of the entacapone.... Initially I said "No" due to the awful experience the year before... But something had to be done to inmprove her Quality of life and so.....

It was introduced slowly, with Stalevo replacing first one medication time slot and over about 4 months until she was taking only Stalevo.

I am convinced that had Stalevo been introduced slowly the first time things would have been much better for Mum. About a year later, meds needed a review again and the neuro (I am sure he said due to her age) put her back on....Madopar..... Mum was 90 then, and from a psychological point of view had the reassurance of the familiar 'pink and blues' ...

 


#8

Hi Dolly,

One way of altering your drug intake is spreading out the levodopa.

I was diagnosed in 1999. Started on Mirapexin in 2001 and added Sinemet in 2006. Sinemet and Madopar (both containing the most effective drug, levodopa) are the gold standard for treating PD symptoms, but levodopa is a short acting drug, I think I read somewhere that it peaks after about 1,5 hours. At the start of the disease the brain will still produce dopamine, but the process of dying cells continues and you will need more and more. The short half life also means that you need it more frequently..  Ideally you should get a steady supply (like the people who take levodopa in the form of a gel administered (pumped) directly into the small intestine via a tube) , so that there are no peaks and troughs in the dosages. I asked dr. Paul Worth about this, and he said that it is difficult for most patients to administer drugs at such frequency by mouth,  they cannot cope with a complicated schedule of drug taking., but it would be better if for instance you take 62,5mg tablets every 2-3 hours than 125 mg or more every 4-5 hours. This would also be beneficial in preventing (postponing?) the dreaded  dyskinesias. In your case I would(and I did) take smaller amounts more frequently, but still stay on the total original doses. The only thing you have to watch out for is take them at least half an hour before food and  1,5 to 2 hours after food(i.e. a meal) Avoid large meals and high protein intake, as levodopa is an amino acid and competes with protein in food for absorption. Set up your own schedule that suits your life style. 

Another way is to add Entacapone capsules to your levodopa , this should lengthen the "on" time. If it works you can get the all in one drug Stalevo prescribed . Stalevo contains levodopa/carbidopa/entacapone, So it is really Sinemet + Entacapone.. Although it is called Entacapone, you should not forget that it acts like levodopa and all this Entacapone adds to your daily levodopa intake, you are in essence increasing it and too much levodopa (or too rapid an increase) can cause the dyskinesia symptoms. Levodopa should be slightly decreased when Entacapone is first added.to prevent this. 

The benefit of Azilect is slight, I think, it did nothing for me when I tried it before  starting on Sinemet., but adding it at the stage I am now, could be an worth a try.. 

By the way, there is a new drug in the pipeline called Numient (Rytary in the USA), which addresses the short life of levodopa, It is awaiting NICE approval and costs could be a factor.....I am holding out for it.

I have very bad "off" times , unpredictable, which is worse as "off" means,that I cannot put one foot in front of the other.

I tried the Neupro patches(Rotigotine) and was advised to drop the Mirapexin, but felt this did little and it irritated my skin, I looked like I was wearing a patchwork Onesie (in all shades of pink and red), so I am back on the Mirapexin..

Get hold of information on sites like www.medscape.com, or pubmed,com Go on the neurotalk forum, try to find out as much as you can so you can if necessary challenge any decisions or at least put the questions directly to the prescriber rather than the forum members.

Best Wishes, Kate.

 

 

 

 


#9

Thank you so much everyone for taking the time to reply to my post, it is much appreciated and your knowledge is amazing. I knew about the protein and do time my meals accordingly. I heard from the Neuro nurse today and she has suggested we try a dose of Azilect with my morning meds which are 150/37.5 Madopar and also take the 10mgs Requip XL after my evening meal rather than when i go to bed which should help with the evening restless legs, which had all but gone but has recently returned. She did mention Entacapone but i was reluctant after being told that i could have chronic diarreah, unfortunately i do have a tendency that way anyway and last year had an bowel endoscopy which showed inflammation of the colon. I take other meds for various health problems and some of these drugs interact with the Parky meds, so at the moment it is trial and error i think. It is all a bit of a balancing act isn't it? I am fortunate to have 3 PD nurses locally who are always at hand and with your own experiences and knowledge i feel much more reassured. Thanks so much, i will let you know how it goes.

With my best wishes

luv Dolly x


#10

After 10 horrific years with Ropinirole and Requip XL we found a wonderful neuro who suggested a regime much as Kate outlines....Sinemet little and often, every 2 hours. I am amazed more patients aren't taking Levadopa like this and suffering prolonged off times.

After 15 years on the Parkinson's roller coaster my husband is at last mobile, fall-free and OCD free.

The only extra he has, alongside Sinemet and Azilect is a soluble Madopar as a rescue remedy if drugs fail to kick in, eg after a large or protein-rich meal, or panicky in a crowd at the theatre.

PWP need to be well-informed as Kate suggests and work on a regime that suits them.Let's hope the New Year brings everyone better health, hope  and Rytary!

Love

GG


#11

Goldengirl,

I love your picture! have seen it on the forum many times....but never really looked at it!

I like the idea of a 'rescue remedy dose' for when needed.


#12

I am glad the picture made you smile!

I am surprised more PWP aren't told about the Dispersible Madopar as a rescue remedy.....

crunched up and swallowed with a big swig of water and within 10 minutes you're on the move again!

Costs very little and it makes a big difference psychologically to know you can get through difficult situations quickly.

Worth a try?

Have a lovely Christmas!

Love

GG

​x

 


#13

I will add that to my lengthening list of things to share with professionals about PwP and efficient management of their medication!

The only experience I ever had with dispersible madopar...was when there was a shortage of the "pink and blues" (as Mum used to call her  Madopar capsules)...she was prescribed dispersible ones....this was when she had a 3 week hospital stay.....

The nurses insisted that they had to be dissolved in a little medicine cup with water,  but she couldn't swill the cup and tip it back far enough to drink all of it, so every time left residue of her much needed Madopar at the bottom of the cup.

I didn't find this out for a while, when I noticed it, I spoke to the Senior Nurse who told me it had to be dissolved or the tablet would 'burn her oesophagus'....

 I was completely exhausted and under a lot of pressure with all that was going on...and so bowed to their professional status.

Later  I took it up with them and them conceded that they had been wrong...and she could have swallowed them whole and had a drink...or even better, as you have described GG, crunched them up before swallowing with a drink...

Sad isn't it that PwP (and I guess not just PD but other conditions too) have to be so on the ball about everything all the time, even when hospitalised, stressed, unwell, or just every day on the journey that is PD.


#14

Good luck in getting sorted in the New Year, KeldI...you have a lot of ideas to discuss...

My husband has a small cross-body man-bag and always has his pills and a small bottle of water in it.lIt is surprising how much calmer he is when we go out as he knows he will be OK if things go wrong.

He sometimes takes a Dispersible Madopar 10 mins before a film ends as he used to panic moving in a crowd, scared of freezing and being knocked over.

Then strides out with confidence!

Partly psychological I am sure but that's fine!

Keep trying!

Love

GG

 


#15

How does taking the 'extra' Madopar affect the rest of the days meds?

How often does he take a 'rescue' dose?

Did the neuro suggest this or your PD nurse?

As you said it seems a shame that neuros don't suggest this more; to give confidence and a boost of dopamine when needed!

 


#16

It doesn't seem to affect the normal Sinemet doses...it works quickly and wears off quickly...

Our PD nurse suggested it and the neuro said it was fine and that lots of patients used it...although he never mentioned it before we did!

He takes 1 every morning with his usual Sinemet on waking to get going....big improvement on how it was before..

About once a week he takes one 10 mins before eating with friends( bigger meal, more orotein) and 1 after wherever he is in the 2 -hourly Sinemet merry-go round...

He "rescues " himself maybe once or twice in a week...again wherever he is with the Sinemet..that just goes on as normal.

He has 56 on his repeat prescription every month.

Sometimes now he doesn't use them all.

Hope this helps...please ask whatever you like..

Love

GG

 


#17

Wish I'd known about that...it would have helped my Mum on many occasions when things were tricky...


#18

hi  keld

                    i was going through same problem about 5 months ago & gg mentioned this to me i tried the meds and they did nothing for me so there not a guarantee .entacaphone & aziliect solved mine issue more time ON


#19

I am so sorry the dispersible Madopar didn't work for you, Gus.

I think it's so true that all PWP have to keep trying and find what works for them.

Perhaps post DBS patients like you have got to a point where Levadopa is not well-absorbed any more and only works where the patient is still responsive to it?

It took us a long time to get to the point where symptoms were well-controlled and I can only repeat...keep trying and find the best way for you!

Love

GG


#20

OH was on, for many years, 250mg  Madopar 3 times a day. It became ineffective with lots of OFF times, but, on the advice of the neurologist, it was changed to 125mg, 6 times a day some  years ago. It made a huge difference to the OFF  times. Maybe we will have to go to   62.5mg even more frequently soon. Meds are already every 2 and a half hours!

 

Rather than increase or adding another medication, then ask about changing the frequency?