Meds - For now am I better with or without them


#1

Hi,

Eight years ago I found lifting my left foot onto the clutch pedal felt heavy and aggravated my lower back pains so I eventually bought an automatic car.  Three years ago a relative saw my leg shaking and suggested I saw my GP.  I had put this down to the challenging situations I was facing with two teenage daughters!!

My GP referred me for a brain scan.  She did not share her suspicions so when I was Dx  with PD it came as a COMPLETE and utter shock.

For two years I then pushed it to one side but gradually a few more symptoms have crept in.  Working part time in an office I found I couldn't type so fast with my left hand.  My knee would shake more.  My hand wouldn't hold a fork so well.  I have a lazy left leg that drags slightly.  I get cramps in my foot and my left side is slower to respond and have stiffness of hand and foot.  My hand and arm is often cold too. I have to turn around carefully as balance is mildly affected.  i am blessed with sleeping well but do wake up momentarily when I need to turn over, which is slow and awkward.

Then I faced redundancy.  

I was, surprisingly, kept on - even with my boss knowing I had PD.  This meant so much as I had 'put myself on the scrap heap' and was feeling fit for nothing.  I now work full time.  I am tired by the end of the day but enjoy my job and want to continue as long as I can.

My consultant feels I should start L-dopa.  But should I continue 'coping' with the above symptoms or should I embark on taking meds to regain some of the mobility and functions that have been compromised.

It's hard and scary to try to weigh up pros and cons of starting the meds and all their uncertainties and possible side effects and work out when would be the right time.  I do not  currently have any contact/support from a PD Nurse or support group. 

I would really value your views and experiences about this.  I know each person's views will vary, but it would be good to hear your stories and experiences.

 

 

 


#2

Hi Hazysunshine  

I've read your mail with interest and can empathise with almost each of the symtoms you have mentioned.

Congratulations for your "Soldiering on" attitude to the diagnosis which is a good example to all of us.

Keeping active helps enormously and my attitude to medication is to postpone it until its absolutely necessary.

However, If anyone knows of a quick fix I would welcome to hear about it  :-)

Keep going without chemicals for as long as you can !

Best wishes

Beano

 


#3

Hi Hazysunshine,

Welcome aboard.

I recently posted the reply below to another member with the same predicament.

I was diagnosed recently and faced the same dilemma.
When I voiced my concerns, my GP and neurologist echoed the two opinions below.
Hope this helps.

There is no medical benefit to be obtained by delaying the start of treatment and there is some evidence that delaying it for too long can actually have an adverse effect in the long term.

It's a commonly held misconception that the drugs only work for five to seven years, and some patients conclude that they can choose which five-to-seven-year period of their illness this will be. They decide to delay treatment for as long as possible. But if they wait too long, a higher dose of medication will be needed sooner - to control symptoms that have been steadily worsening over the years. The side effects from the higher doses of medication will occur more quickly. In the meantime, the person and the family will have endured months (or years) of frustration and fatigue.

Hope this helps.


#4

Hi Beano and Jacko,

Thank you for your replies.  I can agree in part to both responses.  I agree a higher dosage could bring on the side effects more quickly but at least without the medication I can still sleep without bad dreams; not be governed by clock-watching for taking the next dose; not having to create a regime of what foods you can eat and when; not have depression etc.   

That said I do have to continually have physio and massage to try to release the muscles that are contracting.

Jacko - are you on meds now.  Could you share your story.

Beano - could you tell me more about you too.

i know we all have different stories to tell  and I would love to hear from other people.  Thanks

 


#5

HI Hazy Sunshine

                            I was diagnosed 18month ago and started on Madopar right away,probably because of my age,,after two weeks I noticed a great improvement,got up out of a chair much more easily,cramps in foot and legs stopped,not as stiff,much better at using the computer mouse,I started on 62.5 Madopar and have not had to change what I eat.

          After 6 months was put on ropinarole as well,however I felt worse on it and came off it after a few weeks

           I am now on 125 Madapor 3 times a day and a slow release at night,and 5 months ago was put on 10mg selegeline,sorry should have said I am now 72.I Was at the neurologist last month and have not had the drugs increased

          I definitely feel starting the drugs as soon as I was diagnosed was the best decision,although i had Parkinson symptons for a couple of years before diagnosed,so far no bad dreams,hope this helps.  Anne D

.       

 

 

,

 


#6

Hi there I'm 37 got dx at 36 via Dat scan and symptoms. Started Medopar 62.5 3 x a day then increased to 4 x a day. Meds started 6 months after dx. This is an effort to obtain a better way of life now when I think it matters.  Not quite coping with the nights no sleep = restless legs  but most days are holding up. If I've had a bad bad night then meds appear to have a lot to work with ... I'm no expert but can say how I feel x 


#7

Can I ask more about why you were put on evening slow release please? Xx


#8

Hi Anne,

When you first took Madopar did you feel sick, tired or feel at all ill because of it.  

Why did you have ropinarole prescribed initially.  I guess the effectiveness was wearing off thus the intro of ropinarole, then the increased dose of Madopar.

Do you have any side effects - the list of 'possibles' is very long and scary to read.

 


#9

Hi Hazysunshine

Go for it and accept the meds. I put off taking any for the same reasons as you, am now on ropinirole slow release  and wished I had started taking them twelve months ago!


#10

Hello Hazysunshine

Hear what Dr Nin Bajaj said in a Q&A on this site ( http://www.parkinsons.org.uk/content/professionals-qa-management-stages-parkinsons ):
“I am a great believer in treating patients both early and optimally. [...] normalising dopamine levels early allows patients to maintain high levels of physical function and once they lose this functionality it is very hard to salvage it. I must stress that this is a personal view and no trial has directly addressed this issue, although trials such as ADAGIO show some supportive data in this direction"

I think I'm surprised that "no trial" has addressed this: it must be in everyone's interest to get this right. I think I'd agree with Bajaj: gimme the drugs!


 


#11

Hi

I was put on Requip XL 9 months ago and my tremor stopped the first day.  My frozen shoulder finally fully released 4 days later and I got my handwriting back within the week.  Yes, I suffer from fatigue but I would rather than than shake.  When I suggested delaying taking meds my neuro said that he strongly recommended that I start taking them as there would be less wear and tear on the body which struck me as sensible.  I am just hoping that I can stay on as low dose as long as possible.

Good luck with your decision.  Fizzy


#12

HI Hazy Sunshine,

           I had no problems at all when I started Madopar, felt a lot better after only two weeks,.

          After being on Madopar for 6 months the neurologist suggested I take Ropinarole,rather than increase the Madopar,hoiwever I felt after being on it for about 2 months my legs were  worse.This seems to be the way the drug regime goes,they are increased slowly until you feel you are on the right dose.

        I think the dose of Madopar I am on is still quite low.

        i have no side effects.

        Selegiline was introduced to help the remaining dopamine left in your brain to work better.

        Hope this helps     ANNE

 


#13

Hi Fizzy

I am also on Requip XL. Prescribed the meds in August this year,  wished I had started taking them twelve months ago! Put off taking meds because of side effects, but find I don't have any and feel loads better. Still have tremors but not expecting miracles too soon it's early days. Still working been put on lighter duties but retire next year ,yippee!


#14

Well Hazysunshine

You must be doing something right to be still working!

I applaud your positive attitude

Medication is important however as you can gather its a question of considering wether the benefits of taking the medicine outweigh the risks, not necessarily the endless list of possible side effects that are stated on the information pack but those risks that the neurologists agree on.

I was diagnosed two years ago aged 68 and was prescribed Ropinirole starter pack followed by the XL version.

There was marginal improvement but my energy was drained and I felt better off them.

 HereI  am back on 2mg of XL Ropinirole, however I combined this with lots of exercise,walking,yoga etc. This helps with everything other than my Tremor. 

My attitude to Parky is to keep as active as possible and keep the drugs "low and slow" for as long as I can!

Hope this is of help to you

Best wishes

 


#15

Hi,

    I'm keeping a diary on Madopar.

Madopar contains benserazide hydrochloride/levodopa.

I have been on it two months. I take 3 x  25mg/100mg caps per day. It takes time to adjust so I'm told. I can be reassessed at anytime if I want. At the moment I am staying with it. If you look on the net there's a list of side effects as long as your arm. These are my main ones...........

My shoulders ache a lot.

Fuzzy head at the start, not as bad now.

Dry patches of skin.....E45 cream used.

Tired/lethargic.....way off my normal persona.

Forgetful. It is said to cause confusion, but I just find I forget words easily when talking.

My left arm is very restricted, my left leg shakes badly and I walk funny (eat your heart out Charlie Cairoli) This has not improved. I have lost the jitters at night which were awful. I also seem to do some things at 33 and a third rpm, instead of 45 rpm. A bit like slow motion without the replay.

In general I am much the same as before with a few added problems. As you rightly say we are all different. So you can't take this as the norm. I just hope it slows my PD down.

I don't drive on the advice of my consultant. In all honesty I didn't feel safe anyway. PD in my case is compounded by other work related damage.

One thing I have found is the specialist nurse I was allocated is brilliant.

I am amazed how many symptoms are the same as others........ie turning over in bed is very awkward. I wait to see in Feb what they make of my diary. Until then I am putting on hold my ambition to be an astronaut.  

Orphy.

 

 


#16

Hi Beano

 

I was dx approximately three years ago but did not want to go on meds because of side effects, I was ok for a start but then things went downhill slowly, until I had to give in to meds in August this year when I was put on Requip  XL 2mg, then it was increased to 4mg a month later. I feel I have been given a new lease of life with very few side effects, I wish I had started on them twelve months ago! I am 61 and still work in a busy canteen which keeps me active and positive, I retire next year but don't really want to.  

 

Hope you get on well with your meds, I agree with you to keep them low and slow for as long as possible.


#17

Hi Shefinn - "retiring next year but don't really want to"? then don't!

S


#18

Hi Shefinn,

I hope that this finds you well and thank you for sharing your experience and feelings.

Like you and many others I am on 2mg xl Ropnirole"requip" but unfortunately I find that it robs me of energy and gives me the feeling of being drugged up (which I suppose I am :-) and my tremor still persists or gets worse 

Maybe I will just have to persevere and until the beneficial effects will kick in. Did you have a long delay until you felt good ?

Be interesting to hear of other peoples experiences on this med also

Best wishes

Beano

 

 


#19

 

 

HI Beano

Thanks for your reply big grin

 

Didn't take long for me to feel a whole lot better, I think about three weeks. Feel like I have loads of energy, hope it lasts!! I must admit though when I come home from work I do have a little nap. I think as well working keeps me focused and keeps me going.

 

Still have the tremors as you still have, I was told by consultant they wouldn't go. My brain seems to be functioning better as well (even though it wasn't that good before I had PD!  lol. I'm still only on one 4mg tablet a day, can't wait to go on 6mg!!!

 

Hope you soon feel better


#20

 

Hi Semele

 

Don't worry this PD is not going to get the better of me, will keep going as long as possible, unfortunately it depends on the boss sad face