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Topic DAWS Go to previous topic Go to next topic Go to higher level

By mylove On 2016.07.05 23:31
Does anyone have any experience with this? Or with tapering off an agonist?

By jcoff012 On 2016.07.06 21:05
Michelle, what is it? I tried looking it up...

By mylove On 2016.07.06 21:55
Dopamine Agonist Withdrawal Syndrome. Long story short - we are embarking on a week long taper to come off of Requip, which he's been on successfully for fifteen years but has recently begun to produce sudden sleep attacks, including (frighteningly) the inciting incident behind the wheel at a stoplight. I'm very nervous about his coming off so quickly after so long, but everything I read recommends just a 7 day taper out.

Except if you're in that population that goes through withdrawals (DAWS). Then it's dangerous and miserable. :(. Cross your fingers we are not in that group.

By LOHENGR1N On 2016.07.07 00:17
Michelle, 7 days does sound like a quick time period especially for something Ben's been on for 15 years. Are they going to monitor Ben during this withdrawal? (like blood pressure and anxiety?) In the olden days they would put patients in the hospital during withdrawals to monitor them. It does sound scary. we'll keep our fingers crossed and thinking or you both during this phase of the battle.

By flowers12 On 2016.07.07 00:17
My hubby started off with requip/ropinirole, took it for 5 or 6 years. It caused him to have extreme paranoia and hallucinations in the last year or so. The neurologist switched him over to Sinemet/Carbidopa/levodopa. I don't recall him having any kind of withdrawals and he stopped having the paranoia and hallucinations until the last year or so when the dementia flared it's ugly head.
Sending good thoughts.

By mylove On 2016.07.07 09:34
Al - no formal plans to. That's up to me, I guess. We are just going to try to ride it out and should be able to contact the neuro at any time if we have issues. Some folks say it's as bad as a cocaine withdrawal. Others have no issues. Flowers, yours must be in that group...thank heavens! I do recall a few years back when we got a different manufacturer for our XL and the enteric coating was too tough, so the pills passed through without breaking down. Thus no Requip getting through. That was an ugly week or so before we figured it out. I guess that's why I'm a bit nervous.

He's already down to 8 mg from 12, and yes - they've boosted his Sinemet dosage to compensate but it doesn't work in exactly the same way, so the swap is imperfect. Last night after trying to do a couple of small things around the house I came home to find him sitting (sitting!) absolutely drained, stiff and painful and exhausted.

This is one of those times I regret still working, or having the kids out of the house. I'm close by, but wish I could have someone here just in case. Ugh.

And then there's the afterward....when we boost the Sinemet up to the roof to take the place of the Requip that's worked so well for so long. Shortening our time yet again. I'm conflicted about this new change, but he's confident that he wants his good time now while he can enjoy it vs more years later. And I know he's very fearful that he might hurt someone if he falls asleep again.

I'm thinking I'd like to see if my work will let me telecommute for a few days.

By mylove On 2016.07.07 09:42
Here's what PubMed has to say about withdrawal: "The symptoms of DAWS include anxiety, panic attacks, dysphoria, depression, agitation, irritability, suicidal ideation, fatigue, orthostatic hypotension, nausea, vomiting, diaphoresis, generalized pain, and drug cravings. The severity and prognosis of DAWS is highly variable.". So....we flip a coin. Might be us, might not. (Hopefully not).

Here's the good news/not so good news (from Cornell):

"DAWS only occurred in patients with ICDs (impulse control disorders) and not in those who tapered DAs for other reasons. However, only one-third of patients with ICDs experienced DAWS". - we don't have impulse control issues - good news.

"Withdrawal symptoms were only alleviated by increasing the DA dosage. Other treatments, including high doses of L-DOPA, antidepressants, tranquilizers and psychotherapy, were ineffective." - means increasing Sinemet won't help get us through this. Bad news.

"DAWS correlated with cumulative exposure to DAs, with the most severe symptoms occurring in patients with the greatest DA exposure". - this sounds like us....in the 15 year range.

"Subjects with DAWS had milder physical disability than those without". - also like us. He has little physical disability comparatively speaking than most.

By VioletV On 2016.07.07 20:32
mylove - don't worry about the now/later issue with Sinemet. Turns out (according to Eric Ahlskog, MD a PD expert from Mayo) that the reason doctors thought that Sinemet's effect wore off was that as PD gets worse Sinemet is not effective. That is not a "wearing out" effect, but a progression-of-PD-effect. He calls it a medical Urban Myth.

See his book Parkinson's Disease Handbook (2nd edition) for really good information about PD meds.

By EachDay On 2016.07.07 20:33
I hope all goes well. Please do go slow. My heart is with you. My husband has also been on roprinirole for about 15 years and at 12 mg. level. We talked about his getting off a few years back but have done nothing. We were recommended to do it 1 mg each month but it was a Mayo consult and how you would do it was not something they were willing to follow. Al's advice and don't rush it is all I can add. You are brave to do this.

By determined On 2016.07.08 06:41
Violet,

I would be a little bit careful with this interpretation. The wearing-off effect of Sinemet can't be just "PD progression" in the most direct sense, i.e. in the sense of continued loss of dopamine neurons. The whole purpose of Sinemet is to replace dopamine that those neurons would have otherwise secreted, and at least a part of the ceiling effect with Sinemet likely comes from desensitization of dopamine <receptors> on other brain cells. That part is not an urban myth. That is not to say that the current understanding of PD, both in the medical and in the academic communities, isn't simplistic.

By cmm On 2016.07.08 11:13
My husband had similar experiences with Mirapex and Sinemet.Quite honestly, these drugs all have have horrible side effects for some. My husband is Parkinson's drug free after DBS but it's disappointing that nothing works for him, just makes everything worse.

By mylove On 2016.07.08 16:08
Very true for some folks. I personally hoped we could just get through the sleep attacks, because the Requip worked so well for so long without any other issues for my husband's particular "brand" of PD.

Someday I feel like they're going to discover that it really isn't one condition but a whole collection of similar disorders with slightly different presentations all along. :(. It just makes it that much harder to predict how anyone will respond to anything. I may be being a worry wart for no reason.

Cmm....I hope they find something to help your husband.

By determined On 2016.07.09 08:32
Mylove,

It is almost inevitable that that the current categorization of neurodegenerative and neuropsychiatric conditions is lumping different disorders together. And that the view of any condition that is used as a basis for treatment is more often than not too simplistic. This is where we, the caregivers, may be able to help by cataloging our observations and seeing whether groupings fall out.
But that is for another time.

With respect to PD, the simplistic view omits the norepinephrine system - another group of cells in the brain secreting norepinephrine rather than dopamine -- that often is affected in PD as much as the dopaminergic one. And sleep bouts make me think that there is a chance it has an NE basis. Maybe it would be worth asking your neurologist whether trying to see if Provigil generic name modafinil) may help? It is a drug that is normally prescribed for narcolepsy or shift work, but is also at times used in PD. and it does, to the best of our knowledge, work through the NE system.

Also, maybe asking the neuro whether completely going off of Requip is necessary, or whether a combination of Requip and L-DOPA would make for a milder transition. My PWP is on a combination of both, although more for historic reasons.

By LOHENGR1N On 2016.07.09 11:28
Getting off base of the original topic but following these last couple of posts what I believe is very overlooked is the side effects of our medication. Many lump these into the disease. Why, because many people exhibit the same reactions (side-effects) to a medication so the general theme of medicine say's ah ha patients show a marked trend at say 7 years of developing ? for discussions sake diskinesia. However a Doctor in practice at 7 years has been introducing a medication into their patients drug regime. This leads to belief that at 7 years give or take a patient developes symptoms attributed to P.D. when in fact it is medicine induced. Then it leads to confusion of disease vs. medication. It can lead to delusions or delirium mistaken for dementia. And yes cataloging observations and medicine tweaking can go a long way to sorting out this medicine vs. disease problem if We could get researchers and Doctors to listen.

Awhile ago in the Neurologists waiting room several P.D.ers were waiting and for the heck of it (most likely because of the boredom and to ease the everybody's looking at me stress) I started talking to them and asking what Med's they were on and in almost every case I had guessed to myself by Their actions, (side-effects) which drugs they were taking. So that needs to be addressed also are We labeling side-effects as diseases

By determined On 2016.07.09 15:48
Couldn't agree with you more, Al.

What's worse is that sometimes the side-effects take a while to develop, and are then taken as an indication of further progression, leading to...more medication and more side-effects.

This is where I think we could help. We already exchange experiences and suggestions. For the moment, these are anecdotal accounts. But if we do it in a somewhat more structured of a way, we could perhaps achieve "crowdsourcing" of certainty.

By mylove On 2016.07.15 08:53
Just checking in with an update. Yesterday was the last day of the taper and today the first day of no Requip. No overt withdrawal symptoms (thank God), but it's like he has no meds on board at all. Because the mechanisms of action are different, increasing the Sinemet has done nothing. That's consistent with everything we gave been reading. So....we have spent the week watching a lot of movies, because pretty much all he can do is sit on the couch.

Back on the first day of 4 mg he asked the same question I have been asking. We did this to offset the sleep attacks so he could drive again. But if you can't move, you can't drive either. So what's worse?

We can't find anything out there that adequately states how long it takes after you quit for balance to be reachieved. We are going to try this for another week then have a follow up appt with the neuro on the 25th where we will ask these questions. With as much pain and immobility as he's having now, unless this is transitory, we will be discussing the pros and cons of adding it back in. But we are trying to give this a fair shake and the benefit of the doubt. I'll keep you all posted.

By jcoff012 On 2016.07.15 11:01
Keeping you and Ben in my thoughts, always in my heart. Peace to you and Ben. Carl has been on Requip for eight years with no effects, but I am anxious to learn how Ben is doing. Take it one day at a time. Hugs and love to you both. Jane

By karolinakitty On 2016.07.16 09:48
MIchele - sent you a FB message but figured I would register again so here's our thing with DAWS
Learned the hard way of getting off Requip with DAWS....
It took Jim a year and a half to get off it completely. He was on 12mg a day we slowly backed down 2 mg at a a time. Jim's was so severe by the time he got down to 4mg that she was ready to put him in the hospital and induce coma to get off the rest....he had all kind of issues...hallucinations, dementia increased, tremors were crazy and he had just started tremors....several things she did to "supplement" as he was backing down....added Savella..helped with leg cramps. To aid in sleep she added the Klonopin then. started at 1mg 1x daily...really helped him with that...then as things decreased with the requip she added amitryptiline 25mg 1x in the afternoon to aid in anxiety....this was all over a very ling period of time and took 6 weeks at minimum for each 1mg decrease of Requip.....so things really spread out over a long period of time. She actually put Requip down as ann allergy so he would never ever get an agonist again... Jim may have been a rare case but it was very very hard. In the docs access to Requip online it actually tells the doctors of a patient can't get off the Requip then they are basically stuck with it regardless of the risk factors. I know several people in the UK who have won law suits there regarding these side effects and issues with withdrawl. At least now they have a name for it...before, when jim was getting off of it..they didn't

By mylove On 2016.07.16 22:03
Very scary! That's what I was worried about, but so far so good. Today is day 2 of no agonist, and he's getting around. He's sore and fatigued, so very much "undermedicated-y", but at least no DAWS-type effects. The only thing that I've noted that could be attributed to that is nausea/fatigue/stomach pain. I think we dodged a bullet this time.

Still waiting to see if life can be "normal" without what kept him moving for the past 15 years. That's the big remaining question. :-/

By carman96 On 2016.07.27 00:42
My husband's MDS wanted to taper off on his Mirapex. The reasons were his hallucinations and that he has been on it so long it is probably not that effective anymore.
He was on 1 mg 3x a day. So the doctor wanted to give him 1/2 pill less a day for one week, 1/2 less the next week, and so on, so that was very slow.
I lessened his Mirapex to 2 mg a day but he is having worse mobility so didn't want to stop it completely. The Dr said I did the right thing.
It truly sucks to have to decide between mobility and hallucinations.

By mylove On 2016.07.31 23:33
Well.

This experiment has not gone well for us. Now that the Requip is all gone, we saw the neuro on Monday and she's given us permission to slide in a few Sinemet CR to try to get things to even out.

Here's where we are at two weeks after eliminating the Requip. My bright, able 60 year old husband now looks 80. The Sinemet is lasting barely 2-4 hours. For the last hour of that time, he can only move with assistance. The fatigue, pain and stiffness are crushing. It's like we fast forwarded in the disease. He says "now I LOOK and FEEL like I've had Parkinsons for 18 years". He's right.

The neuro was sufficiently disturbed by his appearance last Monday that she put him back on Azilect to try to get the long lasting effect that he's missing with the Requip. But we quit Azilect when we tried it a couple of years back because it put him in the hospital with tachycardia of over 160 that wouldn't come down after eating a corn dog. She says "the food warnings that were on the drug before now were removed, since they weren't that big a deal", but we are legitimately nervous anyway after the corn dog/tyramine interaction. (Just because they remove a warning from the package insert doesn't mean YOUR particular interaction magically goes away, right?)

He's starting the Azilect tomorrow since there doesn't seem to be much choice. I hate to say this, but I feel a bit frustrated. We pulled a drug that was working to keep him taking less of the Sinemet longer, keeping dyskinesia at bay for longer, because of driving. Not to mention that it was keeping him productive and at least able to interact and move and have a life. In return, we UPPED the Sinemet to the point that the neuro is scared to have him take any more, so we are forced to add a drug that messed with his heart and cost us a hospital stay and an ambulance ride the last time he tried it. And at the end of the day....HE STILL CANT DRIVE.

Tonight, I'm legitimately concerned that if things don't return to better, I'm going to have to move us downstairs, because he's not able to get up the stairs to get to bed. This is not where I expected us to be a month ago.

Argh.

By Sheridan On 2016.08.01 04:59
So sorry you both are having such a hard time. My husband had to stop all agonists due to horrible side effects basically choosing keeping his mind over mobility with results similar to yours. His new MD put him on Rytary a year ago with good results. More on time on 4 doses a day than with 7 doses of regular sinemet. Recently needed to add 1/2 sinemet to the mix for a boost. Always tweeking but ever mindful of side effects after 20 years with this horrible disease. Know what you are going through and hoping for the best.

By mylove On 2016.08.01 09:00
Thanks. Sorry you have to know how this goes!

I guess we would feel better about it if he had had major problems with the Requip or if it had stopped working, but this was all about driving, which seems so minor now in hindsight. For us, it was working very very well.

We tried the Rytary too. It didn't work for him either. :(

By jcoff012 On 2016.08.01 14:39
Michelle,

I wish we lived closer together so we could share this ((((((((HUG)))))))) . As you know, Carl also takes Requip and has handled it well for these eight, almost nine years.

I wish we all could get the answers we need so we could safely navigate this PD journey.

Please let Ben know how much his talent means to so many of us...we need him back at his best in order to create such lovely carpentry and woodwork.

Hang tough...both of you. You can only do what you think is best at the time. PD has the reins in our lives, so all we can do is ride along and hope for the best! Keep fighting...you both deserve all that you can get from this life! Love you, Jane

By lurkingforacure On 2016.08.01 20:33
I've been following this hoping you all would have had a different outcome. We have tried three times to get off of Mirapex and failed, the pain was simply too great. After reading your experience weaning off of Requip, I'm not sure we will try again. Maybe the body becomes so used to a drug that removing it adds too much stress in addition to the PD, and it is just overwhelming.

I hope you and Ben are able to regain better functionality, soon.


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