How much more can one take?

About Parkinson's and health Treatments and therapies
1

Hello all you lovely people, I've not been on here for sometime, but I am so bogged down with caring and trying to keep everything together I don't seem to get much time these days. My OH was diagnosed approx 2 years ago now, it has taken some time to get his meds right, as told by you on this forum that it would take 12months or so with adjustments here and there. 

He is on 4 x Stavelo a day - 1 x Azilect @ night - 2 x Amantadine a day (added about 3 months ago) 

My OH has never been a smoker or drinker, always eats small portions, (puts me to shame) he exercises regular and up untill been diagnosed with PD he was really fit. He does have ventolin inhaler as he is astmatic, this is down to being a fire fighter for many years.

He recently had a high blood pressure reading, so he had all the follow ups then it was finally decided to give him 2.5mg tablets for blood pressure. It was decided he should have some bloods done, just the normal things. Next day he was contacted to go straight to surgery to collect a prescription for Statins, as he had a Cholesterol result of 5.5????????? so he added these to his sweet shop. I have told him not to take the statins because 5.5 is good???? finally he had a second call yesterday to say his Glucose is very high 8.2, and he needs to have further blood tests!!!!! he feels he is turning into a walking timebomb, he does not want anymore tests or meds.

Is it possible that his GP is just giving him meds because he is 67 and they are not taking into consideration his PD meds? his GP does not prescribe these his Nuero does that, but his GP is aware of what he takes. I know as we age we get more ailments, but surely he should of had an option to take Statins or not? the blood pressure can be because of his meds couldn't it? and now this Glucose reading is 8.2 bad? now he thinks he may have Diabetes? sorry about the Saga but I feel so sorry for him, he's been doing so well with his PD since his has had the correct meds, then all in one week all this raises it ugly head, and all this has been arranged through the practice nurse, hes not even seen his GP although the nurse says your GP wants you to take whatever. any opinions or advice would be gratefully received, love Hols x

 

 

 

2

Hi,

my husband is type 2 diabetic and I have the wonderful  parkinsons, so together we have quite a sweety shop.  I take 1 mg of azilect and 4 sinemet plus 100/25 daily, I also have an emergency supply of madopar.

my husband takes daily statins, metformin for diabetes and ramapril for bp.

5.5 is a bit high for cholesterol, 5.2 - 6.2 is considered borderline high.

8.2 is quite high for glucose levels too should really be between 4 and 5.9 before food and under 7.9 after food.

I would chat to you're practice nurse regarding you're concerns, but I wouldn't stop taking any medication that has been prescribed.  I understand completely how you feel, I know it's hard, I never took and medication most of my life...not even a paracetemol.  But if these medications can prevent anything serious from happening, then we can't argue.

i hope everything works out ok, I wish you're husband well.

Ali

x

 

3

hollytree

 

I would never allow my husband to take anything prescribed by a practice nurse or even a GP. Many years ago our GP said that he knew very little about P as he encountered so few cases and would prescribe only what the  neurologist said was needed. We have both stood by this in the almost 17 years since his diagnosis.

Your pharmacist may even know more about the interaction of all the newly introduced meds. than your GP who it seems he has not even seen.

Speak to, or get an appointment with,the neuro ASAP.

4

Holly

Your GP is the person in charge of your husbands health.

Only he can prescribe the medicine your husband requires.

This is so that he can oversee your husbands medication which may be recommended by several specialists acting independently.  He should check these medications and make sure there are no interactions that may be a danger.

I use the drugs.com online drugs interactions checker as an indicator if I feel there may be a problem.  If in doubt I seek professional advice.

In light of the fact that you have not seen your GP at all and that the blood tests are high I would ask for an immediate appointment with your GP.

if possible I would speak to a pharmacist and ask him his opinion on all the medicine your husband takes. Write this down and take it with you to your GP appointment as a reference.

Explain to your GP that you are unsure about the effect of PD drugs and the Ventolin and the statins and any other drug he may be taking.

You should always refer to your GP before stopping or starting any medication that you are unsure of.

By all means discuss this with your neuro but let him take up any concerns with your GP.

Regards

Leyther

5

Thanks for your opinions they are very helpful.

I must agree with Benji I also have been led to believe that GP's dont know much about PD. Which is why I can't agree with Leyther as my husbands GP does not prescribe his PD meds these are prescribed by his Neuro. When my husband was suffering and really poorly his GP did not suspect PD obviously because he knew nothing much about it. 

All GP's are so different some more caring than others, some don't give a dam about their patient's or what they are taking, its a sad fact. When you live in the sticks and have a surgery with its own dispensary there is no actual Phamacist there a lot of the time, just technicians who make up the scripts which the Phamacist will check off eventually. Regarding an immediate appointment with your GP is totally impossible at our Surgery you are lucky to get one 2/3 weeks later.

Looking on Drugs.com is a good way to go Leyther, and I shall do that thank you. 

Ali, thank you for the figures mentioned regards the blood results they are very useful to me and I shall be guided by them Cheers all x

6

Holly

Your GP should be aware of any prescribed drugs your husband is taking, Your neuro should be writing to your GP to tell him of your condition and of any change in his prescription.

How do you deal with repeat prescriptions out of interest. Do you have to get them from your neuro each month?

 

7

Hi Leyther,

My husband gets all his meds from our local surgery as it is a dispensing practice.

The Neuro makes the decisions on his PD meds, Stavelo, Amantadine, Neuro patches, Azilect.

His GP prescribes his Astma, HBP,Statins, meds, his Neuro meds are on repeat along with these meds from the surgery. 

He is back on Tuesday for Bloods for Glucose levels, just hope its lower and not pointing to Diabetes.

Regards Holsx

8

If you need advice from a pharmacist you can make an appointment to speak by phone to any pharmacist.

I would recommend Boots the Chemist

http://www.nhs.uk/NHSEngland/AboutNHSservices/pharmacists/Pages/pharmacistsandchemists.aspx

9

There seems to be differing views about who one should deal with regarding drugs. I my case apart from my neuro I have great faith in my parky nurse,who is always available to discuss any problems I have.I see her every 6 months and my Neuro every 6 months,so it is only 3 months between seeing someone.I never get involved with my G P about Parkinsons

being new to these forums I find it mind blowing how many different drugs there are out there,the many combinations of same and when they are taken. Small wonder it does not always work as it should.

Lastly on another forum there was discussion about generic drugs and their effectiveness, has anybody any experience or thoughts about them

AlanJ

10

Hi AlanJ

Well, prior to going to the gp about my PD symptoms I hadn't visited the surgery in maybe ten years, and I've no idea who "my" GP might be. I also understand that the average gp sees relatively few cases of PD in their career, while a PD nurse will of course see many. So after dx it seemed reasonable to deal with the nurse. Not even the neuro - partly becuase on the two occasions I've had my meds upped it was the nurse wot did it; partly because the nurse is more accessible and, frankly, cheaper for the NHS.

Ah, generics. Bane of some people's lives. The deal is, I think (and Kate will correct me if i'm wrong) that a prescription written for branded drug (Mirapexin, Madopar) can only be filled with that brand; a prescription written for the generic drug (pramipexole, co-beneldopa) can be filled by any make of the generic, or by its branded equivalent. Though when my pharmacy ran out of co-beneldopa for my generic prescription recently they had to ask the dr nicely if they could fill it with Madopar, though I guess that's more to do with fiscal, rather than clinical, issues.

Does it matter what you get? It shouldn't, as the active ingredients have to be the same. I don't seem to be able to tell the difference between branded, generic or different makes of generic so I'm quite happy for the surgery to give me whatever's cheapest. But some people say they can tell the difference and don't do so well on . . . well, guess what - the cheaper drug.(Do put me right, anyone who can't tolerate the branded drugs.)

Cheers

Semele

11

Hi all Semele and Leyther are right your GP is the one who should be monitoring your meds and if they don't i would go elsewhere if at all possible.

And yes the branded drug's are more costly than the generic ones .

Some GP's are good mine see's me once every month, but i would suggest a back up GP if your is not available i will only see the two i have mention pertaining to my PD.

 

Best wishes to you all keep fighting don't let the PD win. BB XXXXXX

12

 

Hi

when i started my treatment i.e the drugs i was put on a low dose of sinemet, eventually the dose was increased and i was asked too report back too my gp changes i experienced that he would then report on too my neuro.

As the dose increased i went from branded 'sinemet' too generic(unbranded), the low dose of sinemet was fine, and would of been fine had it of been increased simply with branded, but i noticed with the generic although the dose had gone up it and went up it was less effective.

I reported back too my gp that it was less effective and i had more symptoms including increased muscle and joint pain, he then throwed a paddy and phoned the pd nurse as he couldn't get hold of the neuro, i left the surgery while they sorted it out between themselves

But i myself looked on the internet on the differences between branded and generic too back up what i was saying too the gp and give myself a  second opinion based on what the internet could tell me, it turns out there can be a considerable difference in branded and generic.

A call back in the afternoon from the gp. the gp and the pd nurse decided too move me over too madopar and it would be ready for me too pick up in the morning, i also had a call from the pd nurse as well i explained too her what had occured with my medication as she thought the Gp had panicked.

the next morning i went down and picked up the prescription, it was a pot of generic madopar, i refused it pointing out what went on the day before and the reasons i'd now been put on madopar. the pharmacist told me we cant get madopar here in this area.

i told her if i'd been prescribed 'madopar' i should be on 'madopar' and not a generic and that i want the same treatment as other people are able too get elsewhere, not second class, i left it with her too sort out.

that afternoon a call.... your 'madopar' is ready too collect!!.

The roche madopar is in the glass jar, with a clear printed label and clear printed instruction sheet, when you open the jar there is cotton wool to stop the pills rolling about and being damaged, the pills are smooth and roll down my throat with ease. it is a product made with love thought and pride.

The generic 'madopar' comes in a plastic pot, the label is smuged, the leaftlet is smuged, the pills look rough, I didn't try one but generic 'sinemet' pills were rough in texture and stuck too my tongue and throat. it's cheap and it looks nasty and reading tells me it's inferior.

And my pd nurse asked "your getting the madopar alright??". yes and now i'm fine almost.

13

im glad you got the drugs you wanted , i myself have trouble getting  the branded named  ones ,i now have problems with symmetrel  100 mg they have stopped manufacturing them i have been given a generic  one amantadine , i also have crohns disease and the generic one has caused me a flare up .so what to do next  if i stop the amantadine i  will have the  dyskinesia back and if i dont stop i have the crohns to deal with anyone any ideas

14

hollytree,

The patient must judge which meds work for them and which may be counterproductive.

This involves much googling and investigation.

If I were to take all the pills that the GP and the neuro have suggested to me I would be a

mumbling mess.

I get excellent advice and information from attending my local PD group here in Kent.

The fifty members that come to the monthly meetings have a wealth of experience in all things PD related. I find that although they are all on different combinations of PD meds it is possible with gentle questioning to find which drugs seem effective and which may be less so.

For instance several members have indicated that side effects from Amantadine make using this drug unattractive.

However, Sinemet, Madopar and Stalevo are all reported as effective although each of these meds has it's own idiosyncrasies.

I benefit from Sinemet but have trouble with Stalevo which gives me involuntary movements

after a few days use.

Arsene