I live in UK and had PD nearly 2 years. My walking and balance are my main problems.
I take 5 x 25/100 Sinemet Plus per day plus Pramipexole 0.18 mg 3 tablets 3 x per day. My symptoms can be very up and down for a few week's then settle down again.
When I am told to take more sinemet I seem to feel worse and have to stop. I read somewhere that Azilect can help with walking. Has anyone had this happen to them and did Azilect help ? I'm not sure if Azilect is priscribed in the UK beause of price. Any advice would be great.
Budsey
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budsey
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Price should not be an issue. I'm in UK and was prescribed Azilect at diagnosis. Still taking it (now with Sinemet). I'm not qualified to say if it would be suitable for you - ask your neurologist about it.
I felt it improved my mood, and made me steadier. It was my only medication for the first three years after diagnosis. Side effect of sore skin lasted only a few weeks.
Re seeing your neurologist, it's not courage you need, it's good preparation to make good use of the time with him. Make lists! ... Of all your medications and timings... Of changes (and acheivements) since your last visit... Of the particular problems you hope to address.
Hi Budsey new year greetings.Baz has been on Azelect and Mirapexin for 5 yrs and has been really good on this combination. Sorry you don't feel confident with your Neuro do you not have access to a Parkinsons nurse? We have a good rapport with ours and find she is very helpful.and informative.
We can contact her by phone and she always calls back.
Hi Budsey. I am in the UK too and my husband has been on Azilect or Rasagaline since he was diagnosed nine years ago.
No drug will be the answer to all problems but I hope you find some improvement soon.
Two comments really. The first is that we hear a lot about building working partnerships with our medical team and how important that is. Often that implies that the doctors are not listening to our opinions. But it does mean that we have to be active members of the team too. If you don't have confidence in your neurologist you can ask to be reassigned. However, if you think you have not been clear enough or assertive enough about what your most difficult symptoms are or how your quality of life is being affected then the answer lies within you, at least to start with.
If you attend clinics with somebody else, prepare them with what you want to get across and they can help keep you on track.
Secondly, ask your Parkinson's nurse, consultant or GP for a referral to a physiotherapist with a neurological interest. That way they can observe your movement and design a home exercise programme which will be tailored to your needs. Don't be put off by the thought of a wait for the service, it is your right and a darned sight cheaper for the NH.s to prevent falls than to have you in hospital recovering from one.
Thank you for your good advice - you are right - I have to be more assertive or will regret it. I do get ready to speak up to some degree and then I too easily back down again. All these lovely replies are helping me to have more courage and planning and will read them all agian before I see Doctor. I am worrried about falling so I need to do something soon.
Don't wait Budsey, get that physio appointment underway. Ask the GP if they have a falls service in your area. Have you met you Parkinson's UK Local Adviser? They can point you in the right direction for further advice and just listen to your worries.
Thanks Soup for getting back - I do have an appointment which includes Phsio I am going to ring up and get it brought forward because it's not until May would you believe. What does the falls service do ?
Yes, I do use facebook sometimes is there something I should be looking at ?
It sounds to me as if the UK has a much better program for treating PD than we have here in the US - at least in the rural areas, where I live. There's no "team" here. I have to travel three hours to the city for treatment, and all I have is my neurologist once every six months. I was diagnosed three years ago, probably had symptoms for three years before that. I've never even heard of most of the drugs that you discuss in this forum.
Hi Budsey. Yes, I can tell you of my experience, which seems to bug many of our readers but nevertheless it is a true story.
I was diagnosed in 1992 with Pd, and that diagnosis has been confirmed by two other neurologists since then. It has also been investigated by Dr Norman Doidge and written about in his latest book, "The Brain's Way of Healing".
I originally took sinemet and symmetrel for 2 years and then was taken off those meds by my neurologist and put onto one single medication called Eldepryl or Selegiline. It is similar to Azilect. After 8 years of taking eldepryl and doing FAST WALKING my Pd symptoms had got so much better I was able to come off the medication and have stayed off any medication since 2002, sixteen years ago now. I still do the fast walking.
If you want to learn more then go to my website - reverseparkinsons.net and read more about it.
I am not selling anything, other than my story, but you can contact me and I will help you, free of charge.
Amazing story - if only I could do fast walking, that's where my problem lies my legs just won't let me walk far. I don't want to take anymore Sinemet Plus. already taking 5 x 25/100 it was just given to me and I took it. It did help my walking at the time. 2 years on Now I feel I need more help and too scared to take anymore.
Hi Budsey. Do you think it would be possible for you to walk for five minutes? If so, then why not walk for five minutes every second day for two weeks and see how it goes. If at the end of two weeks you are feeling a bit stronger then see if you can up the time to ten minutes and walk for another two weeks.
If you are not abe to do either the five or ten minutes then try doing whatever you can and only increase it when you feel stronger.
If you are shuffling then write to me on my email address and I will help you overcome that problem, at no charge.
Thank you for your reply - yes I can walk for about 15 minutes but very uncomfortable because my head feels extremely heavy, I feel giddy and by balance is terrible. I usually use a walking pole at or hang on to my husband.
Hi Budsey. Sorry to hear it is so difficult. Do you think you can keep at it every day for at least 3 months? If you do and don't feel easier at the end of the 3 months then I don't know what to suggest.
Azilect is commonly prescribed to eke out what dopamine you have circulating from your own body and/or the meds. It usually makes a subtle but definite improvement all round . . The NICE guidelines say that upon diagnosis you should have the input of a physio which can help your walking etc. It is not always the case that you are running short on dopamine - in fact too much can produce the same symptoms as too little. Try Nordic walking to get your body back into more normal gait. Are you seeing a neurologist who is a movement disorder specialist? Have you a PD nurse you can discuss things with as they have more time to discuss the management of the condition. Hope this is of some help.
Thank you for your reply - all round improvement is just what I need- it's interesting what you say about too much dopamine can cause the same symptoms that is just how I feel when it is suggested I take more sinemet. I just don't want to take any more. Nordic walking has been mentioned to me several times now so just might give that a try. I don't know if my neurologist is a movement disorder specialist I can ask my PD nurse I am seeing her soon.
My husband was diagnosed 12 years ago and took no meds. for the first three years (sheer determination and the good luck not to have fast progressing symptoms). Like Mr Pepper he he believes in exercise and it certainly makes a huge difference. Walking (treadmill and outside), some weights, Pilates type exercises for core strength. He now takes Stalevo (5 x 125 a day) and pramipexole (twice a day) and has neupro patches. He still exercises but cannot do as much. Symptoms progress and it is erratic, it's the nature of the beast. If he could have kept symptoms at bay by 'fast walking' he would have done and I don't like the implication that this is all you have to do and are at fault if you resort to drugs. I question whether anyone who can manage without meds. after 15 or so years actually has PD but that is a whole other question.
As for the 'team' - we are in the UK and envy the amount of help which seems available in the US! If there is help you have to seek it out and then fight for it. It's wrong but it's how it is. You will find little is volunteered. It is up to you to be pro-active - it's your illness and in your own interest to get what you need. Your neurologist is employed to help you to the best of his ability and to connect you to people who can assist. The main problem is attitude - you will be fobbed off at every turn unless you stand your ground. Nicely of course, but stand your ground! You pay your taxes which pay the salaries of these people, you are entitled to their services. I have had to battle for every appointment and change of treatment and sometimes this has meant going to the very top of the hospital hierarchy. Our local hospital seems to think that one appointment PER YEAR with a neurologist is sufficient which shows how little they know and feels uncaring. We did not accept this and have managed to be seen slightly more often but it has not been easy. Don't accept everything without question. Do your research, be organised so that you don't waste the appointment time and be clear about what you need. Ask questions. Persist. The doctors are just doing their job, make sure they do it properly. Is there a PD nurse? How helpful is your GP? Ask to see a physiotherapist.
Do not accept the cost argument and do not give up. Smile a lot, be polite but do not give up. Good luck!
Happy New year! Whilst agreeing with most of your comments I am sad that you feel you are having to battle for everything.
As a retired nurse my wife is in dispair of the health service but is a true advocate for my wellbeing and does my battling for me.!
She has done several courses on Parkinsons and takes a great interest in all that's going on in the research field. In some respect she is more on the ball than the Neuro.
she is of the opinion that a lot of Drs are going through the motions rather than doing their job properly and more concerned about their budgets than patient wellbeing.
We are very lucky . My Team listen and are more than happy to go along with my requests,rarely having to battle,My PD Dr is a geriatrician with a special interest in PD and far more progressive than the Neuro we saw, less dogmatic and prepared to accept me as part of the team,I am involved in decisiion making not told what to do.After all it's me that has PD living with me and know how it's making me feel. It's not a one size fits all and its up to us to take control wether they like it or not.
What a wonderful wife and team you have you are very lucky.
I do have a very good PD nurse who I will be in touch with soon. I am feeling more determined than ever to have my say nicely, but with the right outcome, I hope.
Sadly all I can manage at the moment are the power exercise video they we brought back from Italy. Really struggling with the gym work. I just need a new medication I feel and not more of the same.
Sue Bowdler - couldn't agree more. Seven minutes with the consultant once a year. Last time I arrived a few minutes early only to be grabbed by the neuro in the corridor. I nearly passed myself coming in on the way out of his office or would that be the other way round? I am lucky to have a PD nurse and a slowly progressing manifestation of the condition but there are still areas where there is no such ongoing management of the condition or they are so hard pressed that they cannot offer the service which is intended. Parkinsons UK is developing an excellence project focussing on the optimal management of PD among professionals but you hear nothing about it in the general Facebook page or the PD UK website. Its all very well being positive but what if the neuro is not positive
and, for example, cant even be bothered to give you an information leaflet on diagnosis r, for example, still fails to appreciate the value of exercise in alleviating symptoms. Where apathy is a known symptom, it is difficult for a patient to be pro-active and as you say "what are we paying our taxes for?" We are not a poor country. It is a matter of priorities.
Thanks for replying - I really love you positive atitude - being fobbed of is what weakens me - I agree with exercies and can't do as much now as my legs have become weaker. I have a battle on my hands I'm sure but I have to do it, I must do it and will.
I just love your positive attitude - it's the fobbing off that weakens me - but you are so right. I am more determined than ever to have my say, musn't forget with a smile probably be with a look of fear.
Go for it! Exercise is a chore but my husband has built it into his routine, like taking pills and drinking water (hates both), but it definitely helps. The more basic strength you can build up the better you will cope and it helps mood too. The NHS will push you to one side if you let it - don't!
Don't know about you Sue but my wife does the exercises with me to stop her gate creaking.!
We also use the Wii Fit and Wii sports .its a lot of fun and definitely helps as you strive to improve and laugh a lot.
The things I thought I would find hard I'm actually better at than the wife and the things I thought would be easy she's better at so its very motivating.
Whilst the weathers bad we play half an hour twice a day and find it very therapeutic.
Just putting my two cents in. I write a personal journal off my symptoms then from that I write a short summary for my doctor before each h visit. Kind of labor intensive but been helpful with communication and understanding. Also about the med holistic approach is not everything works the same way. There are so many variables with our illnesses. What works for r some may not work for others.. while it is good to learn we also do not want to beat ourselves up what we do or do not do. My mom had cancer and was told she had 3months to live. She did chemotherapy for a few years and lived a productive life for 30 years. She lived longer than any patients to the doc had. She did eXERCISE and ate healthy. Her view of holistic versus meds are my example with pd. Our choices are good to research options and do the best we can.
Thanks for replying - true we are all so variable with our illness. There are so many variables within my own symptoms as well.
That was a lovely story you shared about you mother she must be an inspiration to you. Don't know much about holistic approach to PD but food for thought.
Thank you for your reply. My mom was very into holistic before her cancer diagnosis. Some of her friends told her to stay away from chemo but with some research her decision was chemo. She worked with her doc but also researched holistic. I felt her approach was balanced for me with pd. She died at an older age from other causes. I miss her, but she is my role model. Healthcare is so personal for each one of us. I think both doctors and patients are continuing to learn. Not fun being I'll. We all have to find our own journey as we learn from each other. Wish you all the best care for you.
I'Ve had PD for 13 years now with balance and walkijng as main symptoms. I was in Azilect trial,placebo group,and continued it a little as I was hopful that it would be neutoprotective. I saw nor felt any benefit so tapered off of it. I only take Sinemet 50/250 (GENERIC) 2tabs every 3 hours now while awake - 5x /day I have DBS and walk with assistance -walker now, service dog-SOON!!
Thank you for sharing your story with me. Sorry to hear Azilect didn't help but you just don't know till you try. There seems to be mixed views as to it being neuroprotective. I am already taking 5 sinemet plus a day 25/100 mg and if I take anymore which has been suggested to me it seems to affect my head and doesnt help. I know it's difficult to keep the dreaded dyskinesias away but that is why I am searching for something else. Hope you are managing well and the DBS has been successful for you.
I AM ON FOUR SINEmeT a day - ANY MORE AND THE DREADED dYSKINESIAS TRY GETTING A HOLD, OR A SORT OF WHOLE BODY RIGIDITY (I SUPPOSE ITS just THE TRUNK REALLY) FOR A DAY AT A TIME. Although initially very wary of a dopamine agonist I was therefore persuaded to try the Neuropatches. Presently on 8 mg and have found them very reassuring as I l ive alone and they are 24 hour . I have no side effects. Some people have trouble with them not sticking or skin reaction but its worth persevering.
Thanks for the information - I asked in the Pharmacy today the prices of Azilect around £70 per 28 tabs 1 mg in UK Rasagiline is cheaper is it exactly the same drug as Azilect Do you know ?
Rasagiline is the generic name for Azilect and as far as I know it is available everywhere except here in the US, where we only have Azilect. The generic is scheduled to be available, on or about February 1st. I have been very anxiously waiting, because now that I am on Medicare and a supplemental policy, Teva, manufacturer of Azilect, no longer will provide a coupon, I have to pay $65 per month, and will reach the dreaded "donut hole" in July when the cost would jump to around $235 per month. Generic can't come soon enough!
For financial reasons,I have refused my neuro's suggestion of trying the Neupro patch. I agree with many folks here that consistent exercise, especially Qigong, weight training, aerobic dance and eating mostly plant based diet, avoiding sugar, processed foods, etc. along with a positive attitude is the key to managing symptoms.
generic is now available [6/01]2017 be happy with $65./mo. I have reached the dreaded donut hole and the price went right back up. coment if you have any further information
Also want to mention that in the two years since diagnosis the two meds suggested by my neuro are brand name, I.e. expensive!! You know that they will break the bank if doc gives you lots of fancy brochures!
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