HEY ALL YOU PWP WHO HATE YOUR DRUGS

AND THINK THEY ARE NOT DOING ANY GOOD ? WELL YESTERDAY i I DECIDED I HAD HAD EBOUGH OF FEEING LIKE CRAP AND HARDLY BENG ABLE TOMOVE WITHOUT MY HUSBAND PACTICALLY DRAGGING ME TO WHERE I NEDED TO GO .. HE CAME WITH MY 5PM MEDS AND I JUST SAID NO , I AM NOT TAKING THEM . I THINK I WOULD HAVE BEEN SICK IF I HAD TRIED TO SWALLOW THEM-

ANYWAY I HAVE SURVIVED THE NIGHT AND THE MORNING ON JUST THE MODOPAR - 125 MLGS X3 --6 TIMES A DAY -

MY SISTER WAS ON SKYPE YESTERDAY WHEN I COULD HARDLY SPEAK AND AGAIN THS MORNING - SHE TOOK ONE LOOK AT ME AND SIAD - MY GOODNESS YOU LOOK SO MUCH BETER - AND THAT WAS BEFORE I HAD EVEN OPENED MY MOUTH !!!

I HAD TRIED TO CALL MY NEURO TO GET HIS ADVICE BUT HE WAS NOT AVAILABLE AND THEY COULD ONLY IOFFER ME A 9 AM APPT ON MONDAY - WHICH WOULD HVE MEANT US GETTING UP AT 6.30 - SO WE HAVE ELECTED TO CALL HIM ON MONDAY - I AM NOT A STUPID PERSON OR UNGRATEFUL OR NON CO=OPERATIVE - I HAD JUST HAD ENOUGH OF FEELING SO BAD-

WATCH THIS SPACE ....

79 Replies

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  • Good for you , go girl, i might try the same then go to the pub and see what happens

    talk later

    Al

    xxx

  • AHAHA .. WHY NOT - BUT I KNOW YOU ARE A TRUE PARKY WHEREAS IAM NOT - I MEAN I DONT HAVE TREMOUR AND I HAVE NEVER HAD ANY RELIEIF FROM THE DRUGS I HAVE NEEN TAKING...

  • I never had any relief from my PD with any drugs until I started taking double my Madopar dose. I went from 62.5mg Madopar to 125mg 3 times per day.

    A while after my first double dose my wife and I went to ASDA (that's Wallmart to you folk over the pond) for the weekly shop and while wandering around I suddenly found myself moving about normally. I didn't realise it at first but suddenly it dawned on me that I wasn't shuffling, I had more energy, I was able to turn and stop and weave in and out of people with their trolleys, It was indeed a wonderful release.

    Following an experiment to stop (slowly) using Pramipexole I found that I was getting benefits that I hadn't before realised. The effect of the Madopar was less profound, I started RLS and so couldn't sleep. Also I generally felt less robust and much weaker, It became necessary to rest more frequently.

    Now without the Madopar and to a lesser extent without the Pramipexole I have problems with gait freezing and getting about in general. In fact I feel like a disabled person, which of course is what I am.

    Also I don't have tremor either with or without medication. I suppose this is just yet another example of how we are all afflicted in own own particular ways.,

  • Hi sha

    Good 4 u!

    Lol Jill

    :-)

  • THANKS JILL XX

  • WOW!! You are so brave - I do hope this improvement continues. We're all here for you whatever happens. You deserve a break. One day I'll give that hug in person.

  • OH CONTRARE MY DEAR - IT IS YOU ALL WITH THE REAL PD THTA ARE THE BRAVE ONES - I HAVE NEVER HAD A TREMOR OR HALF THE STUFF THA YIU HAVE TO GO THROUGH-

    HUGS TO YOU XXX

  • If you don't have real PD, then what is it you do have ?

  • i dont know that is just the problem, i think that it has not been addressed

  • oh! well good luck with finding a correct diagnosis and with that diagnosis being good news..

  • So happy you are doing better!!! Yes you are brave to try this but i am soooo happy it was a good outcome!!! I pray it continues for you!!! :-)

  • my docs have restricted the ammount they will prescribe meaning i sometimes run out

    ive gone 4 days without meds or a very reduced dose and felt much better for it im now slowly reducing my dose

  • THAT IS REALLY INTERESTING - THANKS FOR YOUR INPUT

  • What drugs have you been taking that you are cutting down on ?

  • i was on sinemet 5 times aday plus stalevo 5 x a day plus sifrol 2x a day

    prior to all these i was on madpar 5 x a day

  • and i have stopped all of them appart from the madopar

  • Ah yes! I remember posting some reply about your drugs before and apart from the Sifrol the other drugs all contain Levodopa as the main active reagent. Now if you don't have "normal" PD I can imagine that you will get a poor response to those drugs and so there would be little point to taking them.

    In fact a poor response to Levodopa was (until quite recently) the best way of distinguishing normal PD from other types.

    Anyway good luck with getting something sorted out that works for you.

  • I do think many drugs can accumulate in the body and cause problems.

    The lack of exercise, being sluggish etc may just not allow the body to breakdown and get rid of the drug.

    I think some times it is good to stop taking a dose and reduce for a few days.

    Only my opinion of course, but I do think many drugs can become toxic in the body.

    I do think we know our own bodies better than the doctors.

  • HEAR HEAR TO THAT ...

  • agreed, doctors hear what they want to hear. We do become very toxic I believe.

  • I KNOW YOU WILL FEEL BETTER . BY NOW YOU WILL BE A LOT SLOWER

    AND YOU WILL BE TELLING YOUR SELF. "I CAN DO THIS" . IN LESS THAN A WEEK. YOU WILL START THINKING WHICH IS BEST ?THE DRUGS OR THIS. AT FIRST YOU GOT BETTER .

    I WILL BE WATCH YOUR POST .

    PS I HOPE I AM WRONG ENOUGH SAID .

    YOUR EXPORT. GOOD LUCK XXX

  • good luck to you,hope things keep improving.

  • THANKS TP YOU ALL FOR YOUR SUPPORT - I WAS JUST FED UP WIHT FEELING LIKE HELL AND THE DRUGS WERE MAKING ME UNABLE TO EVEN SPEAK ... SO I RELLY DIDNOT HAVE ACHOICE I DONT THINK

    ANY WAY I AM STILL HERE AND DOING OK - AT THE MOMENT ... I AM QUITE PREPARED FO IT ALL TO GO TITS UP , BUT UNTIL THEN .. I AM IN CHARGE

    PROMISE TO KEEP YOU ALL POSTED

    XXXX

  • Ha, ha...that's one of my favorite expressions! I have another one but I'll message you on that so as not to offend anyone on the site.

  • Almost three years ago my primary doctor took me off all my meds (I had gained a lot of weight…slept most of the timed… cried often…).

    Was off all meds (extremely difficult to do...took several weeks) for a few weeks. One evening I couldn't walk. Went to the emergency room (we were out of town). The Dr. put me on Car/Lev and told me to find a local dr (we were staying for several months).

    The local dr. was very helpful!

    Discovered I had been overmedicated and on drugs that weren't correct for me!! :(

    Am still doing sooo much better.

    I have enough energy to exercise daily and eat better. Haven't changed my mess in over a year and have lost >40 lbs!! :) :)

  • WOW THAT IS JUST AMAZING - I AM SO MUCH FEELING LIKE I TOO HAVE BEEN OVERMEDICATED SO WE SHALL JUST HAVE TO SEE WHAT HAPPENS XX

  • Sha remember to track how you felt before and the changes that you feel daily without the meds. I hope you will be able to get around better. Hugs.

  • Sha , your a fucken star , sod it all, i went to pub got pished fell down got up fell again, and now got a detached retina in left eye haveto go and get it laserd tomorow , ah Parkie, the designer ilness or is it an ilness or a wayof life what ever it is its just shite , cnat see properly just now so my typing might be a bit sqiffy , i do love your radical stance on this cral

    lot s of love

    Al

  • OUCH - YOU SILY OLD S-D!!

  • Al

    A detached retina is a major problem

    Plz do what the dr tells you re "posturing "etc

    Lol Jill

  • I wouldn't change my meds without a doctor's help.

    Also the side effects of some PD meds are PD symptoms!

  • You are so right about this, taking meds is like being on a tight rope, too little and the symptoms return and too much and you get side effects.

  • WOW----that's amazing expecially the weight loss. Did you follow any particular plan for losing the weight? That's the one thing I get quite depressed over.

  • I just prayed about what I should and should not eat. Decided to only eat what was healthy and exercised.

    Did not do this to loose weight. Did it to keep from having to take more meds. When I would start to backslide, I didn't think of my weight, just my health, that was helpful.

    Since I'm not eating and exercising for weight loss, but because I have and will always have PD I think I am more successful. :)

  • Thanks, that makes perfect sense. The message in church this morning was "you have to take the first step", how timely.

  • Let me know how things go. I'd love to stay in touch. :)

  • I will, you do the same. Have a blessed day.

  • Good for you Shasha, it's worth a try. Just a word of caution, I once stopped one tablet, not for Parkinson's, and a few days later I began to feel very unwell with stomach pains. It took a while to realise they were withdrawal symptons. I hope it works out well for you, it sounds as if the drugs were doing more harm, than good.

  • i wish it were clearer what drugs had what withdrawal symptoms, e.g., xanax.

  • thanks for your input cerelia- i am stiil not taking all the meds but have added in sinmet now as i strted to feel weird - so now i am pretty stable and am seein my neuro on friday

  • I too have cut back on my pd drugs and told me neuro later. He's always fine with it. and he's a research doctor.

  • SNAP SNAP SNAP SNAP ..

    i HAVE BEEN GOING OUT OF MY MIND WORRYING ABOUT MY HUSBANDS MEDICATION WHICH IS SINEMET PLUS ALONG WITH SINEMET PLUS AT NIGHT .

    i CAN HONESTLY SAY THEY NEVER SEEM TO GIVE ANY REAL IMPROVEMET ,

    rECENTLY HE HAS BEEN DROOLING AND SWITCHING OF ESPECIALLY AFTER TAKING THE SINEMT PLUS . i GOT AFRAID TO GIVE HIM THEM , sO I HAVE BEEN REDUING THEM , aFRAID I WAS DOING WRONG I STARTED TO GIVE HIM ONE OF THE sINEMET CR IN THE MORNING ..

    i HAVE BEEN IN TOUCH WITH THE CONSULTANTS SECRETARY AND SHE SAID HE WOULD RING ME .. OF COURSE ITS THE BANK HOLIDAY AND AM STILL WAITING AND WORRYING ..

    hE HAS BEEN TAKING THEM FOR ABOUT 5 YEARS ALONG WITH A NEURO PATCH WHICH HE IS STILL USING ..

    wHAT A WORRY IALL IS ..

    pLEASE KEEP THIS CONVERSATION GOING SO THAT WE CAN COMPARE ..

  • You do not say how long your husband has been diagnosed or how old he is. For some people spontaneous switching off is part of PD, as is the drooling. Meds need to be taken regularly and not changed without some neuro input. Please keep hubby on his usual dose until you get in contact with the consultant, sometimes the offs can be caused by the medication starting to take effect. I know its a bit confusing, but lots of us get heightened symptoms around half an hour after taking the pills and then fairly soon after the meds kick in and we are more mobile.

  • Wow, I'm wondering if this could be happening to my husband as he is continually worsening. He seems to be on low doses of his mirapex ( 1mg. 3x day)and sinimet (25/100 3x day) but maybe I should try reducing them. Spoke to Neuro about taking him off everything and starting fresh and he says we could do that but then if something was actually working for him, we would have a problem. Have to think about this!

  • Raven

    I have just read your new blog and see your husband needed an increase rather than reducing his meds. I think this shows how difficult it can be to know how to adjust meds and the need for medical input. Parkinsons is a progressive condition and we have to continually change/ increase our meds as the symptoms worsen. Thanks for the update blog. I hope his new regime works well for him at least for a little while.

  • I did what Sha did but I was only on Sinemet. I felt good for almost 2 weeks but the symptoms returned. Even though I don't get much symptomatic relief there was a definite difference. Since that experiment I have switched to a new Neuro (specialist in movement disorders same as my old Neuro). She reduced the amount of Sinement and added Azilect. She is also available by email and I love that. She is very responsive. I think it is a game or trial and error. What works for one doen't work for all. We have to do what works for us.

  • hi terri - i have now added in sinemet as i wa staring ti feel weird - am seei my neuro on friday at 11.30 - so i expect he wont be too happy with me !!

  • Well the Neuros don't live in our bodies. We have to try and do the things we think might help us. Trial and error. :-)

  • I am thinking about weaning myself of my PD meds and then going to a new neurologist for evaluation. I need to discuss with hubby so he can keep an eye on me.

  • Please see post from Lindylanka that at the moment, appears 3 posts below. Alsosee the post from from Ladyinred.

  • I came off Requip 8mg after some weird and wonderful side-effects, I had felt that it wasn't really helping with my symptoms. WRONG!!

    I reduced down each week, then switched to 2 mg neupro patch, I could barely move!! my whole right side seized up, and I was in quite a lot of pain. as I increased the dose I could gradually feel the stiffness and pain melting away.

    it doesn't completely manage my symptoms, I still have tremor, and some stiffness, but it definitely helps.

    Problem is I can't take a high enough dose without encountering some severe side-effects.

    this is the third dopamine agonist that I've tried and none of them seem to agree with me. Seeing Parkinson's specialist soon and I have a feeling he might put me on levodopa.

    Not really sure how I feel about that !!!

  • I have been told I have MSA or Parkinson Plus..?? I will be seeing another

    Specialist in motor function disorders in July. I want to be evaluated w/o drugs. I stopped Azilect,Mirapex, an Sinemet as i was feelimg sick all the time, nauesa, and vomiting. I could not make plans to do anything an my quaility of life was not what I wanted. If i have MSA, not taking the drugs may cause it to progress faster and my symptoms will be more pronounced. I would rather deal with those situations as necessary.

    It has been about 4 weeks and I have not been sick at all. I have been getting out and doing the things want.

    After I see the dr. in July, based on what she says, I will then make any changes that will work for me.

    I am not recommending others do this. Check with your Dr.

    thank you for letting me share my story.

  • Just wanted to say that it can be dangerous to come off Parkinsons meds cold turkey, they need to be tapered off. Especially levodopa.

    Slow reduction with help of your GP/neuro is advised.

    Some people could develop a condition called Neuroleptic Malignant Syndrome as dopamine helps regulate many systems in the body.

    PD meds are difficult to take, and PD itself can show in many different ways; as we know, we are all different. Many people who have tried reducing medication actually do feel better for a day or even more, but usually the PD symptoms come back.

    In the case of agonists similar things can apply, though moving sideways to a different drug does not seem to have the same issues.

    If you get a temperature or start to feel unwell suddenly please contact your doctor immediately.

    And please do this with the advice of a doctor, preferably your neuro.

    Parkinsons meds are not like pain killers or aspirin. It is easy to say well done and encourage someone to come off them, but if something goes wrong the person you have encouraged may be on their own and not know what is happening to them if they suddenly become ill.

  • thank you lindy -

    i hear what you are saying and i am waitng a call back from my neuro

  • Well said!

    I would never recommend anyone going off their medications without their physicians supervision because result may be fatal...of course some patients will feel better immediately if having and adverse reaction after stopping that medication but may not realize that they need that medicine because the positive effect can sometimes linger for a week of two giving appearance that you do not need dopamine agonist or dopamine but when that effect wears off it can be life threatening in alot of cases!!!!!! Always consult your physician before making any changes...you know your body best and if your having side effects talk to your neurologist! About them most of the time there are ways to get around side effects....goal is to give everyone high quality of life!

  • Lots of people look at these pages so it is best to be cautious, we mostly are not medics and its ok to share information but not so great to give medical advice, as we do not know what the results of that could be to someone we don't even know personally, and may not be online to help if they got ill - always considering that they could actually get online if they were.

  • thank you Lindylanka,

    thank you for your sound comments an suggestions.

    it is good that we watch out for each other.

    As i mentioned ,people should check with thier Dr. before stopping any meds. I did forget to say that when I made my appt. for July. the person I spoke with told me the Dr. I will be seeing often requests new patients be seen w/o taking their meds. I told her was planning to stop them. She said she would tell the Dr.

    thank you again for your concern.

  • I think it all a matter of experimentation they say no two PD symptoms are alike

    and I dare say drugs perhaps don't work same way with every patient i.e differing side effects etc etc. Of course, we are all individuals, our makeup all different too.

    I think we should always question everything in life and never accept any thing as Kosha. To thine own self be true and all that .

  • My husband has been taking Sinemet rising to sinemet plus for 5 years . I cannot say we Have found any sort of improvement . Of course it's difficult to tell the difference without stopping them . He has often had switching off and drooling moments ,

    Particularly after taking any other meds eg , Co Codamol / Digoxin caused real big trouble .

    I understand when you say that the meds can cause these other symptons but that's ok if they help you afterwards ..

    Noramally the consultant comes straight back to me if I ask for help but in this case he hasn't it;s a long bank holiday ..

    He is now taking Sinemet CR at night and in the morning . There doesn't seem to be any ill effects , although still drooling he isn't switching off as much .

    At one point he was off most of the day .

    I haven't stopped the Rotigotine patch ..

    My husband is now 78 and I know the doctors worry about over medicating .

    Until 10 years ago he swam most everyday for all his life .and was a very outgoing person ..

    We do appreciate all the good years healthwise we have had and get on with things . Sometimes easier said than done lol

    .

  • THANK YOU TO ALL THE COCERNED PARKIES - I AM SEEING MY NEURO ON FRIDAY AT 11.30 - I SPOKE TO HIM JUST A MOMENT AGO AND TOLD HOM I HAD COME OFF MOST OF MY MEDS AS I WAS FEELING SO BAD / ILL - HE MADE NO COMMENT BUT AGREED TO SEE ME EARLIER THAN MY APPT WHICH WAS THE 13TH - SO WE SHALL HAVE TO WAIT UNTIL THEN

    XX LOVE TO YOU ALL XX

  • Him sha

    I really think you have-a good deal in France being able to speak to him and see him later in the week

    I see the neuro at end of June ( appt postponed from feb)

    And shall be glad to know if the PSP is worsening or what

    Lol,Jill

    :-)

  • you are right jill - ot is winderful here in most respects but for the language barrier

    hope you get a good response in july

  • Hi Jill

    Hope you have a good visit with the Consultant in June. Who do you see? I think you go to the Walton Centre. I was going to ask to be transferred there but I have a new consultant who my GP thinks very highly of so she said to wait until after my appointment in August.

    My Parkinsons nurse said she would have a discussion with the consultant before then and let me know resutls. Am still waiting.

    Thinking of you. Take care.

    Sue :-)

  • HI SUE

    SEE MY MESSAGE TO YOU

    LOL jiLL

    :-)

  • Have now replied to you. Sorry for the delay.

    Sue

  • sorry end of june .... x

  • I take Madopar 125 mgs x 3 a day

    My neurologist recently put me on Ropinirole 1mgm daily building up to 8mgms daily I took my first dose yesterday, and within an hour my left leg was tingling so I had to walk about to try work it off. I had awful discomfort in my back, I just could not sit down. then felt hot and sweaty and cold and clammy it seemed all at the same time.

    It felt like flu symptoms. It took a while to work off, when I got up this morning I took my Madopar and felt better after an hour.

    I shall not be taking any more Ropinirole.

  • Oldtyke

    Did you use a starter pack? To help your body adjust you gradually work up to 1 mg over a month. You start with 0.25 mg for a week As well many people take domperidone for nausea. These drugs take a time for our body to get used to.

  • Thank you for the warnings. I will consult my neurologist before doing anything.

  • HELLO ALL - JUST TO SAY THAT I HAVE ADDED IN THE SINEMET AGAIN AS I WAS FEELING A BIT WEIRD -

    TO EVERYONE WHO HAS -' TOLD ME OFF 'FOR NOT DOING IT WITH THE PERMISSION OF MY NEURO - WHEN I GO TO SEE HIM IT S THE SAME OLD QUESTIONS - ALWAYS - HOW DO I THINK I HAVE BEEN AND WHAT DIFFERENCE HAVE TH E NEW MEDS MADE - WHEN I TELL HIM NOTHNG HAS MADE A DIFFERENCE HE IS PRETTY SANGUINE AND NOT IN THE LEAST CONCERNED IT SEEMS - SO THAT IS PARTALY WHY I HAVE TAKEN THE INITIATIVE - THART AND FEELING SO DRUGGED UP THAT I COULD BARELY SPEAK OR MOVE - SHASHA XX

  • Hi Shasha, I hear what you are saying, mostly we are left to deal with our drugs ourselves, with whatever benefits or downsides they bring. I do not know where you are from. Are you in the UK? If so there is a hotline at PUK, and, if you are lucky enough, there are the amazing PD nurse specialists, who in my experience are good at helping people balance their meds properly. If you are not in the UK perhaps there is something where you are that is similar? Some of the things sinemet is helping with might be quite subtle, and some of the downsides might be a bit hard to deal with. It is always a tightrope, and I know what you mean about 'barely speak or move', but that can be part of the condition too, sometimes enhanced in the period while medications are wearing off and on. I find that music or the internet can help with this, and tide me over the 'drugged up' feelings. Sometimes splitting your dose can really help with this - split the dose in half and split the interval between doses, so it is gentler and smoother. With your neuros approval of course. But go slowly on it, carefully........ lots of us have been where you are...... :-)

  • I AM FROM THE UK ORIGINALLY BUT WE ARE LIVING IN DEEPEST FRANCE

  • Just a note of caution for those of us with Parkinsons. I had to take my meds at different times yesterday, must have got confused and couldn't work out why my tremor was so much worse than usual and my legs felt really heavy. It was only when I was in bed that I realised that I had two extra tablets left. The question answered itself and has taught me a lesson. Everyone reacts differently, but take care.

  • Yes, I really hate my drugs, I feel like I'm poisoning myself slowly, every year take more, take more, who wins the drug companies. Drug companies are like banks get it wrong still get paid, it wouldn't surprise me, if Pd was man made.

  • Hi Danny

    I know exactly what you mean.

    I also know if anything goes wrong when taking a drug, all the Doctor has to do is report it to the Drug company as an adverse reaction.

    I know this from experience back in 1999. In the USA you can sue a drug company. In the UK you'd be lucky to find a solicitor who would even look at you and not go into fits of hysterics. they will not touch drug companies.

  • HELLO YOU ALL - I WENT TO SEE MY NEURO ON FRIDAY AND HE SAID IT WAS FINE FOR ME TO DO WHAT I DID BUT THAT I MAY HAVE TO ADD IN SOME OTHERES AGAIN -

    SO TO BE CLEAR I AM NOW ON SINEMET AND MODOPAR 5X A DAY - I ASKED HIM AGAIN IF GE THOUGHT I HAD MSA OR PSP AND HE SAIID DEF NOT

    BUT I AM NOT SENSITIVE TO LEVADOPA ??

  • hi sha

    has your neuro def dxd that you have Parkinsons?

    i see mine otmorrwo after a looong wait and hope to ge t soem info as to how the PSP is / is not progresssing

    i hav e lots of bowel probs now

    lol JIll

    ;-)

  • hi jill

    i have been told several times by my neuro that i have PD AND NOT MSA OR PSP so i guess i have to believe him - i asked him again this time if i would ever walk again and he said he dids not know - i cried

    hope your appt goes well

    xxxx ooo xxx

  • all he said was i have a very great tolerrance fir pd drugs - i other words they dont work on me as well as well as they sh ould

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