Recently diagnosed


#1

Hi everyone

I have recently been diagnosed with PD although it has been an uphill battle to get the diagnosis.  I started a year ago with a twitch in my right thumb.  Following appointment with Neurologist and numerous tests finally had a radioactive brain scan which confirmed loss of dopamine on right hand side and borderline on left.  This was early this year, since then have had numerous problems trying to get appointment with Neurologist, but now have an appointment for September.  In the meantime I have had an appointment with the Parkinsons Clinic who were really supportive.  I started Madopar about a month ago, but the side effects affected my ability to work so I stopped them and have tried to go it alone.  This hasn't worked so I have now started Rasagiline (yesterday).  Side effects are nausea, severe headache, internal tremors, nightmares and lack of sleep).  Does anyone know whether these side effects will reduce after time as I'm currently off work, desperately trying to get back to work asap?

 


#2

Hi toffee and welcome to the forum,

As you will see from other posts on the forum it can take time to get a confirmed diagnosis. I assume when you say Parkinson's Clinic you mean a Parkinson's Nurse Specialist (or a multi disciplinary team including one). Parkinson's Nurses are our secret weapon in fighting the condition.
It is common to experience some unpleasant effects when starting a drug like Madopar but usually they subside. You would normally start on a low dose and ramp up slowly to find the effective dose and minimise side effects. Sometimes anti nausea meds are given at same time as a new drug is started. It is also important to make dose changes slowly even if reducing the dose. Side effects are less common with Rasagiline which is a much less powerful drug. Any questions about dose changes and management of side effects are best put to a Parkinson's Nurse.

The Parkinson's UK helpline can help (number at top of page) and if necessary they can arrange for one of the nurses on the team to call you back.

I hope that helps

Elegant Fowl

 


#3

Hi Elegant Fowl

Thank you for your response.  I contacted the Parkinsons UK Helpline today and am waiting for a call.  Yes, you are right it was a Parkinsons Nurse Specialist - I have another appointment with her on the 15th. I've read all the pages on this website and have found them to be extremely helpful - it was surprising to note that some of my other symptoms that I have are actually related to Parkinsons.  I had previously thought it was just old age! 

Thanks again.

 

 


#4

Hello Toffee

Welcome to the forum

I take Rasagiline and i do not really suffer many side effects from them  although on the odd occasion i feel a little light headed especially if standing to quickly, i first started Rasagiline when i was diagnosed in August 2013 but found that by the November i needed more medication, i was then started on Sinemet Plus ( Levodopa ) but suffered terrible nausea and vomiting even with anti sickness medication so i had to change to Madopar which i tolerate very well with  no side effects and no need for anti sickness meds

The internal tremors i suffer with and they are more a symtom of pd than a drug side effect it was the internal / external tremors amongst other things that sent me to my gp

The nightmares  i did go through a period when i was having a few very vivid dreams  after speaking to my Parkinson nurse she thought it may have something to do with the time i was taking the Rasagiline   i was taking them just before bed , she suggested i switched that to morning times which more or less allieviated the vivid dreams have the odd one now and again but nothing to really shout about


#5

Hi, Toffee. Welcome.

I am sorry to hear that you are having problems with side effects from your medication. This is what frightens me most, therefore I am trying to delay starting PD medication, so, as long as my symptoms are not too bad ( bad tremor of left arm, intermittent tremor of left leg, some loss of dexterity and some slowness at times), I will continue to soldier on without.

I was going to give a go at Selegiline, by my pharmacist has so far been unable to obtain it.

Rasagiline is similar to Selegiline, but it is not usually prescribed to relieve symptoms, only for its possible protective effect on the remaining dopamine producing cells.

However, you have to beware of the so called " cheese effect" with Rasagiline, i.e. not to eat foods containing too much tyramine, such as cheese. In fact, I had a bad reaction when I tried Rasagiline a few months ago.Do you think some of the side effects could be due to that?

Several members here have taken Rasagiline without any problems for years, so it could be that it affects some, but not others. Gus  was  also unable to take Rasagiline and had to stop.

Let us know how things pan out for you.

Take care


#6

To Shelly65 and Redpoppey

Thank you both for your comments.  I have since spoken to the Parkinsons Help line and it looks as if the symptoms are related to the PD and not the medication.  Trouble is, being so newly diagnosed I'm not sure what is related to PD and what isn't.  It's a case of learning as I go along.  The headaches don't appear to be so severe today so I am hoping to go back to work on Monday.  I did try Madopar but couldn't cope with the side effects.  I was very reluctant to try any other medication after Madopar but I liked the idea of saving my remaining dopamine producing cells so was happy to start Rasagiline.  I also found out today that eating strong cheese can affect the Rasagiline which is a bit unfortunate as I tend to have a little cheese at night to help me sleep. I'm also now keeping a record of my symptoms so that I can ask my Parkinsons nurse at my next appointment.  I've never known anyone who has PD and if asked, I would previously have said that it was a shaking illness.  I had no idea of the other problems with PD.  Although I am only in the early stages, for me it feels as if it developing quite quickly.  I really would like to know more about what to expect and when and that's the one thing that I can't get answers to as I am told that there is no way of knowing. It all started a year ago as a twitch in my thumb and now my right hand side (hand, arm and leg) shakes when resting, internal tremors, problems trying to walk after sitting down or in bed, problems with articulation and finding the right words when speaking, and handwriting.  Also unable to sleep as you can probably tell by the time of my post!  My dogs have also woken me up a few times at night when I've had nightmares and am shouting in my sleep!  I hope I don't wake the neighbours!  Anyway, thanks for listening to me ramble on.  It helps just to put my thoughts down on this forum.  

 

 


#7
Hi Toffee that is the problem with pd everyone is different and can have different symptoms and the rate of progression will vary greatly so as you quite rightly say we do not know what to expect. I feel that my pd did seem to progress quickly at first I went from taking Rasagiline to taking 3 Madopar a day I am now taking 5 Madopar a day at 3 hourly intervals but my parkinsons nurse did say it does sometime feel that you progress quite quickly but as in my case I seem to be ok now I am in the 5 Madopar abd quite stable on them Take each day as it comes Toffee

#8

hi redpoppy

i think you have been given misleading advice. both rasagiline (azilect) and selegeline are MaoB inhibitors. Neither are proved to be neuro-protective both increase the longevity of dopamine. In the long term ie after 2 years generally speaking, both are irrelevant - only levadopa does the trick.

There is no cheese effect with MaoB inhibitor only MaoA, unless you overdose.

I have eaten heaps of cheese with both drugs, though personally i think both are a waste of time.

cheers


#9

Hi, Turnip,

 "Misleading" advice is rather strong, don't you think?

First of all, it is absolutely clear to anyone on this Forum, I am sure,  that none of us is a medical expert, hence any advice needs to be taken with a pinch of salt.

Secondly, we can only speak in relation to our individual experiences. And indeed I did have a bad reaction ( high blood pressure) taking Rasagiline after eating some figs, which are rich in tyramine.

Thirdly, I think you should read the posts more carefully, as I clearly stated , in relation to Rasagiline and Selegiline, that they have POSSIBLE protective effects. I never said categorically that it has been found that they do have a protective effect.

I also said that Rasagiline might affect negatively some, but not others.

The book " Navigating Life With Parkinson's", ( a book published by the American Academy of Neurology), page 112, states " that MAO-B inhibitors may cause a dangerous increase in blood pressure if taken together with certain types of antidepressants, over the counter medication and narcotic analgesics. Similar interactions may occur with certain types of foods or beverages that are rich in the amino acid tyramine".

Regards


#10

strong words but true.


#11

I was diagnosed with PD 3 years ago at the age of 64.  I am convinced my condition was caused by a tic bite in 2011 (right ankle) and had to have special treatment to alleviate the swelling and the awful pain it caused.  Supposedly tics (I live in Brittany,France) that inhabit the long grass are extremely dangerous to animals and humans.  We have found them on our dog from time to time and they have to be removed with a special pair of tweezers supplied the vet.

 

Since my diagnosis I have been taking Azilect (1 mgm daily) for the tremors.  Recently I had to undergo a thorough examination at the local hospital as I suffered some chest and throat pain.  I was connected to an ECG monitor for 4 hours and had blood tests.  All the test results were negative, I am happy to say.  The doctor thought that it was to do with my stomach so I was prescribed Pantoprazole (40 mgm) for one month, if no better to make an appointment for an endoscopy.

 

I recently looked up side effects for Azilect and found that all the symptoms I was suffering from were due to the side effects of the medication.  I was also taking Carbidopa Levodopa which turned me into a walking zombie!  My hands seemed to be paralysed.  I have stopped all medication for the moment (& feel much better) so time will tell.

 

With PD it is a matter of guesswork a lot of the time as everybody is unique in their symptoms and reactions to drugs,

 

I also tried Requip and Neupro patches (nicotine).  I have had reactions to all of these and therefore am not taking any of them.   As I live in France the medication may have a different name to that in the UK.

 

I am pleased that I can use the Forum as my French is not too good and it will be lovely to hear from fellow sufferers as I am "out on a limb" living here!. Lets hope the powers that be find a cure for us all.

 

I exercise regularly by attending a Keep Fit class once a week and walking the dog daily.  Having a positive attitude also helps, just don't give in is my motto!


#12

Waste of time? That's a bit hard on cheese . . oh, wait, I see.

I put off rasagiline for six months because i was worried about tyramine issues (being veggie i also eat heaps of cheese). But the weight of evidence is, is you say, strongly in favour of MAO-B inhibitors not producing such side effects unless you overdose. Of course, we can all have atypical reactions to drugs and redpoppy was surely unlucky in being sensitive to the effect.

As to the neuroprotective effect, the evidence is definitely weak, and NICE guidelines specifically say MAO-Bs should not be prescribed simply for this effect. Doesn't stop my neuro, who wrote on my notes that she was prescribing it specifically for its neuro-protectivity. doctors, eh? Whatever happened to evidence-based medicine?

Semele


#13

Hi, Shaken Not Stirred,

Welcome to our community. Is it hard for you to live in France when, as you say, your command of the language is a little rusty?

I am sorry to hear you have been having unpleasant side effects to the PD medication you have tried so far. So you have decided to stop all medication for the time being. What are your symptoms? Are you managing to put up with them?

I personally wish my left arm tremor would go away, as I find it really irritating. As you may know, I am not on any medication either for the time being.

Well, do take care and keep in touch.

Semele and Gus, thank you for your comments.


#14

Shaken Not Stirred --

I think you are right about the guesswork involved with medications.  There is a lot of trial and error, because what works for one patient may fail with the next.  I'm about your age but was diagnosed years ago and have had PD at least 17 years.  Azilect, exercise, and good luck seem to be keeping me stable.  But I take only 0.5 mg. of Azilect per day; a full mg. made me dizzy.  Also, my dose of sinemet is tiny compared to other pwp.

Your doctor's comment about your stomach interested me.  My case of PD manifested itself first in my stomach!  I developed gastroparesis, started taking Domperidone to counteract it, and never suspected Parkinson's.  When I started carrying my right arm stiffly and had problems of coordination, I began to guess the truth.

May I ask what part of France you're living in?  It's one of my favourite countries for vacations, but I think I'd find it hard to live there.  However, I have always found the French to be much friendlier and more helpful than their reputation leads us to expect.

Best regards,

J


#15

Hello redpoppy - lovely to hear from you.  I am not intending using any medication for now as I do NOT want to experience the awful side effects I experienced.  

I have a right arm tremor and, like you, find it irritating!  I used to type 72 wpm but PD has put paid to that - I find it hard to sign my name, I used to bike ride but balancing on two wheels is not safe for me now and also the last time I went swimming I sank as my co-ordination was non existent, very annoying! Other than that I am OK.  It could be worse!

Out of interest do you find a lot of people are ignorant about PD (until you are a sufferer) and they think it is a mental illness?  I find that upsetting as it seems to be linked to dementia for some reason?  My brain scan showed no abnormalities - they perform this to discount whether you may (or may not) have suffered a stroke as the symptoms of a weakness in my right side (arm) mimicked the result of a stroke.  My memory is not affected or my speech but I find I get tired quickly (age?!).

The medical service in France is excellent - if you have an ongoing condition eg PD, diabetes - your medication and any treatments are free - everybody seems to think you have to pay for all medication - I have regular physio sessions weekly (I pay the equivalent of 50 pence for each session!).  I understand more French than I can speak - using Google translate is great and extremely helpful.

Well today is another lovely sunny one - I have my daughter staying here at present  (She lives in New Zealand) and my son is visiting us next week (he & his wife live in the UK) so it will be a lovely to spend some time together.

Regards, speak soon.

 

 

 


#16

Hello J

We live in Brittany - 10 years this October.  We intend returning to UK so our house is up for sale (so far

2 1/2 years!).

The French people we know are lovely (our neighbour is French) and the medical service second to none.

All medication is free as I have an ongoing condition (you have to be in the medical system to qualify).

 

Regards

SnS


#17

SnS, living in Brittany sounds lovely!  I strongly prefer the north of France to the south.  And once you're in the French medical system, it sounds superior to anything we have in the U.S.

I just wanted to comment on one thing you said to redpoppy:  getting tired easily is definitely a common symptom of PD, so it might not be age at all.  Many pwp rest every afternoon.

Enjoy your time with your family!      J