2nd time around

Sojourner · Post by **Sojourner** » Wed Feb 14, 2007 4:26 am

Just curious if many have had luck cycling back to a medication after if did not work (for whatever reason) the first time. If so, which one(s)?

cornelia · Post by **cornelia** » Wed Feb 14, 2007 1:05 pm

Can´t help you with this, Mark, but I would like to know too. This year my neuro, who is very knowledgeable on RLS wants me to stop all 3 of my RLS-meds at the same time: Requip, Tramadol and Neurontin, as they do not work as well anymore and I am again having a difficult time. He is absolutely sure that they will start to work again and I trust him for that. I don't give him the green light for a drug holiday just yet; I'll try to hold on a bit longer, as I am scared. But if a 3 week holiday will help, I am prepared to go through 3 weeks of pure torture. But I am afraid hell will last much longer than 3 weeks. It is the tapering down period before one is off all drugs and after that one has to slowly up the dosage until relief is sufficient and reasonable comfy. My fear is that it will take several months until that time and that is what I find unacceptable. Still, my common sense is that in itself it is the thing to do, rather than go on to the narcotics, which BTW my neuro isn't prepared to do rigt now and I can see that. So I would like to add to your question: how long did it take to feel comfortable again after your drug holiday?

Corrie

sugbrendas · Post by **sugbrendas** » Wed Feb 14, 2007 5:02 pm

Hi Mark,

yes, i've been on Klonopin for at least 23+ years. I'm still at 2mg's.
I've gone off of it a few times replacing it with sub's for a break. It was not a good idea for me cause my RLS/ PLMD got worse and worse.

I think i've never gotten too used to the Klonopin, i think we go through these spurts when we need something extra for awhile. I was on Deseryl last time. Even though it made me sleepy as he*L my legs got super heavy and it did the trick. So after awhile i couldn't take the daytime sleepyness so i weaned myself off of the Deseryl. I found out that we need to re-evaluate ourselves , if a Dr add on yet another for a flare up try to see if you really need it after awhile.
AND i stayed on my normal dose of Klonopin.
HTH
Brenda

Sojourner · Post by **Sojourner** » Wed Feb 14, 2007 7:16 pm

Brenda, I'm benignly jealous about your remission. I think it's ABSOLUTELY great and lasts forever.'

Corrie, sorry I cannot answer your question but the post is young and perhaps others wil be chiming in. I quit sinemet quite a few years ago due to side effects. Tried going back to it after several months but the same things started happening minutes after I took a dose. Other than that I have tried many things one time but was interested in knowing just in case... Best wishes for a speedy and successful "holiday." Please let us know how it goes and if you just need to yak.

Sojourner · Post by **Sojourner** » Wed Feb 14, 2007 7:28 pm

Corrie, was just re-reading your post and I guess another related question comes to mind. Is it standard to "holiday" from all meds at one time instead of perhaps one at a time? On the one hand it makes sense and on the other... I'm wondering if after the holiday maybe your startup won't require you to take all the meds again as maybe you will find relief with just one or two before adding more. I dunno maybe all at once will be easier to deterrmine which will be successful the second time around without any contamination from other meds in your system. Maybe others out there will know if there is a SOP when doing this. Again, best of luck.

sugbrendas · Post by **sugbrendas** » Wed Feb 14, 2007 11:33 pm

Corrie,

During one of my flare ups the RLS Dr suggested that to me too.
Having been on my meds for so long and knowing going off all meds makes me worse i refused.

Just recently she was the guest speaker at a meeting and i told her so.
She got offended when i asked her if she could go back to medical school again and go without sleep again and she said no but did seem angry for what i said to her.

You have to know what you respond to. If they were added one by one like mine you should know something about how each one affects you and start from there.

I just needed that extra extra something something for awhile.

Mark, I am so happy for my remission too. Sometimes i'm waiting for my bubble to bust!
The time before last a remission lasted 7 years.
I'm getting way to old for all of the sleepless nights.
I hoping it will be another 7 at least. I kept wondering if i had broken a mirror.
I get so sad for everyone here who's not.

brenda

becat · Post by **becat** » Thu Feb 15, 2007 4:43 am

Good for you Brenda, Go gettem!
Your right.

Mark, I normally do not try meds often, when I do and normally have a bad reactions, I refuse them again.
Having said that, the reality is that as I age, I might need to revisit some of them and try them again.
The DAs, not really going to happen for me. Unless, they come out with something better than we have.
That takes MONEY, there is not much extra going around.
Be well and Blessed Mark.

Love and hugs to all, never without the moon.
Lynne

dv · Post by dv » Thu Feb 15, 2007 4:49 am

I have gone back to putting Sinemet in my rotation. I was taking it everyday, which is VERY likely to cause rebound and augmentation in 90% of people who take it every day...

Dr B says you can take it 3 times per week or less,with no problem.

So I will keep it in my bag of tricks.

Dana

Post by **ViewsAskew** » Thu Feb 15, 2007 5:58 am

dv wrote:Dr B says you can take it 3 times per week or less,with no problem.

Just wanted to add that if you've augmented on it before, or on other DAs, that may not be true. It is a great drug if you have never augmented and keep it to under 300 mg per week and/or 4 days or less a week.

cornelia · Post by **cornelia** » Thu Feb 15, 2007 9:00 am

Mark and Brenda thanks!

My doc wants me to get off all meds because he wants me to start all over again and he knows that my meds will work again in lower dosages. It makes sense.
I have an appointment in May and we´ll see how it goes from there. If I can hold the holiday off until November it would suit me better than in summer. A holiday in summer is great but not a drug holiday!

Corrie

Post by **ViewsAskew** » Thu Feb 15, 2007 4:47 pm

Corrie, you are in a tough spot. From several people's experience on this and other boards, he is right. When you stop them all, it does seem that the brain chemistry resets and the drugs work again at lower doses. This doesn't seem to work if you have augmented on a drug, but does seem to work for the slower dose-creep situations. Nadia successfully did this last year.

What I don't know, is how long it helps. For example, I seem to think that Nadia was much better for a few months, but within several months, she started having difficulties again. Is it worth it for a few months of improvment? I guess it depends on how long it takes to "detox" and reset our brains and how awful that period of time is. If it's only two weeks, that's one thing (and we can avoid our other responsibilities during that time). If it's two months, that seems more monumental, doesn't it?

Maybe you can move up your appointment so that if you do it, it will be before summer vacation time.

cornelia · Post by **cornelia** » Fri Feb 16, 2007 9:15 am

Thanks Ann, I am still thinking about what to do. But if and when I go on holiday (LOL) I will post my experiences on the board, like Nadia did.

Corrie