Dosage

Post by **Polar Bear** » Tue Dec 25, 2007 6:42 am

You know that saying.... Just when you think all is going OK !!!!
Well...... I had been doing not too badly. but don't know what has changed things.

I have my daily 2mg of requip taken as: .5mg during the day, .5mg at 6pm, .5 at 10 pm, and .5mg for during the night for if/when I wake up. Sleep had previously been difficult to sustain, I was only sleeping for an hour or two at a time so doc agreed and gave me temazepam 10mg to help sustain sleep, and codeine 15mg for when I needed something quick acting, for movies and the like. (he read the algorithm).

Temazepam seemed to be working ok for a while and and helped sleep, so I started reducing it to just a half a tablet. This wasn't enough so I went back up to the whole 10mg tablet. But it doesn't seem to be just so efficient, so I started sometimes taking also one 15mg codeine tablet to try and prevent the during the night symptoms waking me up. Also tho I have taken my requip I still get a bit of breakthrough of symptoms when in bed (after about an hour) but a little walkabout/stretch for 10 or 15 minutes has usually been enough to settle me to go to sleep. I don't like this cos I already have taken my meds.

I don't want to up the requip, so I have started taking one 15 mg codeine at bedtime together with the 10mg temazepam, but still wake up after about 4 hours with leg symptoms. There was a time when this was what I functioned on all the time but with the temazepam I had hoped for better than this, especially as temazepam is sort of long acting.

It is now xmas morning and all is silent in the house and I am up and about to get some relief, hoping to go back to bed for a couple of hours sleep.

I have rls 24/7. As I don't want to increase my requip (trying to avoid augmentation/rebound worsening of symptoms) and as I understand that 10mg temazepam is the average dose (so prefer not to increase this), I am thinking of increasing my codeine to 30mg at bedtime. I have occasionally done this before, but don't know if this is too high a dose to take regularly. I am not asking anyone to advise me how much to take (cos no-one is a doc) and know that codeine should be 'take the lowest dose that works'. I'd like to ask how much other people take as a single dose of codeine. Is 30mg too much to take on a regular nightly basis.

Goodnight folks, I look forward to your advices.

Betty

SquirmingSusan · Post by **SquirmingSusan** » Tue Dec 25, 2007 7:29 am

RLS really is frustrating, isn't it! The good news for you is that you're still at relatively low doses of relatively low strength meds. It seems like Temazepam doses go up to 30mg. so you have some leeway there. And I have no idea how much codeine is an acceptable dose, but as I understand it there are no ceilings with opioids - there gets to be a problem if it's mixed with acetaminophen or ibuprofen. And codeine is a low potency opioid, so there's room to move up to a stronger drug.

Yes, the rule of thumb is to take the lowest class of drugs in the lowest possible dose for as long as possible, but that's assuming that works. If it's not working, then you can talk to the doctor about changing to a stronger medication or taking more of what you already have.

RLS is a progressive condition - it's not going to go away, and it's likely it will continue to get worse. You'll need dose increases from time to time, until "they" find a cure. In the meantime, you need sleep!

It seems like codeine has a fairly short half life? Perhaps you could ask for something in an extended release form?

Best wishes with it all!

cornelia · Post by **cornelia** » Tue Dec 25, 2007 9:41 am

Betty, can't remember if you have tried Neurontin (or Lyrica), many people sleep well on it and it helps PLM, I have 24/7 RLS too. I agree with Susan: a stronger opioid would work better. My neuro here in Europe talked to dr Walters, who says that for 24/7 RLS opioids work better, possibly with a tiny bit of a DA. Now I am at night on 7 1/2 mg of OxyContin and 900 mg Neurontin and it works: I sleep quite well, whereas with Requip I woke up constantly.
Hope you managed to sleep a bit. Hope you can enjoy Christmas days.

Corrie

SquirmingSusan · Post by **SquirmingSusan** » Tue Dec 25, 2007 3:00 pm

Yes, Neurontin! I always forget about that, even though I take it at night and it helps my quality of sleep tremendously.

Post by **ViewsAskew** » Wed Dec 26, 2007 6:21 am

Betty, I am so sorry that you're battling to find the right formula.

Just throwing this out there....could you be having some augmentation? I'm certainly not saying you are...but any time DAs are involved, it can be there. I guess only you would know if the RLS is currently worse, or has worsened over time. For example, did the Requip work at one time without the other drugs and over time you've added in more because you've needed it? Or has it never worked completely and you've just been trying to find the right formula?

I hope you find "your" answers soon.

Post by **Polar Bear** » Wed Dec 26, 2007 8:45 am

Hi Ann, Susan and Corrie.
Thanks for all your comments. Augmentation had crossed my mind. I don't want to think that it might be this. Part of this reasoning is that the requip has never been quite 100% effective tho it certainly changed my life in a good way. Also I have had rls symptoms during the day for many years, long before requip.

Once I got to 2mg requip over each 24 hours which gives me reasonable relief (but not unbroken sleep) I have been very reluctant to increase the requip. That's why I asked doc for the sleeping pill and codeine. Perhaps I should accept that with 10 mg temazepam, that 6 hours sleep with one awakening is quite good for an rls sufferer. I just expected the sleeping pill to solve everything. And perhaps I should not be afraid to take 30 mg codeine (2 pills) at bedtime (with requip and temazepam), and also to use the codeine for 'certain situations'.

You see, I don't want to turn into an old 'pill rattling' lady whom everyone asks about her 'condition'. And yet, isn't that what we want.... that people should be more aware. Yesterday at xmas dinner, we visited with my son and his wife, her parents etc etc. I was up doing a walkabout the room several times, and get pretty fed up (tho no-one knew it) with welling meaning comments, such as 'how's the legs'!!!

I have never heard of neurontin over here in UK, must look it up cos we must know it by another name. Need to tread carefully with doc, he has been pretty good and paid attention to the algorithm, and I don't want to push too much, too often. It's almost as tho I don't want to use the codeine etc. too much, and keep a supply for an emergency, should the prescription not be repeated.!!

OMG, am I complicated??? perhaps slightly neurotic???

Bye for now, Betty

cornelia · Post by **cornelia** » Wed Dec 26, 2007 12:51 pm

No, no, no, Betty, you are not complicated: RLS is. I think we are a bit alike in that we have 24/7 RLS. I too suffered 24/7 RLS before I was on meds and the DA's did make my life better, but never worked 100%.

You most likely will not need a sleeping pill when Neurontin or Lyrica is added,

These are the components (don't know the English name for it): gabapentin and pregabalin. Your GP will know.

Enjoy Boxing day (?)

Corrie

Post by **Polar Bear** » Wed Dec 26, 2007 2:41 pm

Thanks Corrie,
I see your question mark at 'Boxing Day', proper name I believe is Saint Stephen's Day. This is also a holiday in the UK, though many stores open and start their sales today.

On a slightly cynical note... perhaps Boxing Day is a good name for it, cos I work as a legal secretary within the matrimonial/family area, and just after Christmas holidays we find there is a rise in matrimonial 'issues'. I think many families find that one week off work, with everyone thrown together for 'happy time', and with relatives gathered, shows up any cracks that may not surface during ordinary day to day life. :roll:

Happy holidays..

Betty

cornelia · Post by **cornelia** » Wed Dec 26, 2007 2:59 pm

That is funny and sad at the same time.

When I lived in London for 18 months as an au pair in an GP´s family they sent me to a pantomime on Boxing Day, Dick Whittington if I remember well in Golders Green.

Happy holidays to you too. I will get on boxing my legs as RLS is bad today.

Corrie

Sojourner · Post by **Sojourner** » Wed Dec 26, 2007 4:31 pm

Neurontin also known as Gabapentin. Lyrica also known as Pregabalin is kinda the new and improved Neruontin. Much more expensive though. You might want to do a search on these in the forum for more info as I know there have been several posts on each.

M.

chefws · Post by **chefws** » Thu Dec 27, 2007 2:01 am

Betty, I would suggest you try Neupro. Since you have 24/7 symptoms, it may be of help. I am on it, and don't have any of the creepies at all, but this is my 5th DA, and is causing me problems and I want off of DA's for a while.
I wish you the best of luck!

Post by **Polar Bear** » Thu Dec 27, 2007 9:57 am

Thanks folks, as I read these posts, I keep notes of the meds for my next doc visit, to discuss with him.
Chef, I don't think I am very familiar with Neupro, and as I have to go out just now don't have time to google it, but it sounds from your post that it is a DA. Oh .. chef.. it must be pretty disheartening to be on a 5th DA. I didn't even know there were 5.

Regarding the Neurontin, I was on an antiseizure drug 2 or 3 years ago which wasn't all that successful, can't recall just which one it was, but this was before I started to do my own research (and before I found this site) and work out for myself how drugs work and the best time to take them etc.etc. So to try it again, it may be a better result cos I would be ARMED WITH KNOWLEDGE :lol:

Bye folks, gotta run... big day on, my friend and I are hitting the after xmas sales !!!

Betty

wigglypain · Post by **wigglypain** » Fri Dec 28, 2007 3:45 pm

Hello all, has been sometime since I was here last. I can identify with this subject very well. I am also a 24/7 RLSer and have been for 4-5 years now. At 42 yrs old that is not comforting, when I realize that as more time goes on the worse it will get. I have been fighting with this since I was about the age of 10.

Anyway I have through all DA's and all the other usual suspects, Neurntin, Lyrica, Permax, and so on. When I took Requip(*the evil drug for me) my pain and wiggly-gigglies took off to a frightening new level. Both my arms and left chest and neck area started to become involved. This was after 2 months on Requip. I am now unable to take any DA's at all.

Also I have 14 years in recovery and opiates were my drug of choice. I had one helluva time finding a doc to treat me and get me comfortable. I statred out with Tylenol #3 (15 mg codiene) just as needed then had to double that after 4 months or so. Next went to hydrocodone 7.5mg as needed, then an around the clock schedule. When I ended up going through 120 of those in a month my doc decided it was time to go to long acting. After I signed a pain contract with him I was placed on a long acting morphine stated with 15mg twice daily. It seems that about every 4 months I needed to increase due to tolerance. I have also tried methadone with the side effect or drowsiniess too much for me. A new long acting synthetic morphine came out recently Opana (oxymorphone??) Took this at 40mg three times a day until I lost my job and insurance in September. This is a great drug but for my one month supply without insurance is $1045. With insurance I paid only $40.00.

Now I am back on the MS contin 60 mg three times per day and my doc finally allows me 15 Percocet 10mg for breakthrough pain each month. I agree with my doc that starting low dose and slowly increase with the opiates is a good thing.

Hope some of this helps with things for anybody. Happy Holidays all,

Ed