DA's and vomiting.

necron99 · Post by **necron99** » Fri Jul 28, 2006 10:52 pm

I seem to be pretty sensitive to the DAs, I tried mirapex for one day.....the lowest dose possible .125mg. This made me feel like crap, and I vomited 3 times over the course of a few hours. Also didnt do much for the rls at that dose.

Needless to say, I didn't take any more mirapex. So I waited a week to see a specialist, who put me on requip's starter pack. I am also taking 1-1.5mg k-pin a night for the last 3 weeks. So My doctor had me start with half a .25mg pill of requip for a day, and then suggested going up to .25. He suggested I try and take about twice as long to get up to a full dose.

To make a long story short. half a .25 pill does nothing.....I cant even feel it, It also does not effect my RLS at all. SO I went up to a full .25mg pill, which makes me lose a full dinner. I mean seriously spending 15-20 minutes getting every last bit of food out. Not pleasent. I also woke up that night with bad rls around 3am. So the doctor has me trying a new doseing regime. He wants me to go with the half a .25mg pill for the next 5 days( taken at bed time) , and then if I can, start taking half at dinner, and half at bedtime. So in a week I might be at a whopping .25mg. Efficacy for requip is around 1-2mg if remember correctly, so it would most likely take me months to get up to where I would know if its working or not.

Here are my questions.
Has anyone else had such major stomach issues to such low doses of DA's. Did they ever go away.
Is there any hope that taking the DA's only at night will help with my 24-7 symptoms.
Is there any way to get it across to the doctors that I hurt all the frikin time, and it is seriously effecting the quality of my life, and my emotional well being.

The only good news I have is the sleep specialist I saw that put me on the requip has transfered me to supposedly the best RLS doctor in the PNW because he is worried about my young age and severe symptoms( which he said will most likely be there for the rest of my life). Hopefully she will be able to be there for me.

Post by **ViewsAskew** » Sat Jul 29, 2006 12:33 am

I really, really dislike doctors today. I know I'm generalizing, but sometimes the crap they put us through is just mind-numbing.

If your doc is so sure you should take a DA (instead of other options), then at least he could give you an anti-nausea drug. You have to be careful, because some do cause RLS. I'm not sure you want to do that, but it is an option. You could at least see if it works. With this, you could jump up pretty quickly to the next dose - increase .25 every 3 days.

There are people who have gotten as sick as you on a low lose. Some keep trying but most of them don't stick it out too long. Most people wil severe nausea and no relief just stop trying. Other people who had mild nausea are able to acclimate to the drug, but not even all of them can. But, this sounds like much worse than mild nausea!

There is NO hope that taking DAs only at night will eliminate 24/7 RLS. They only last 3-7 hours depending on which you take. At the best, you could take the DAs from 3 or 4 in the afternoon is two to three divided doses, and then something like Ultram, an opioid, or Neurontin during the day.

There are only two ways that I know. First, you have to get an empathetic doctor. Some of them either do not care, or won't help anyway. Second, you really do have to be completely honest and taking along a significant other, family member, or good friend can really help. When they hear the other person say, "We've lost our life together," or "I can't believe how much this has affected her/him/us" then they often get it.

Sounds like you are in one tought spot. I have been shaking my head and grimacing the whole time I'm typing - my jaw is clenched! Golly I sure hate to see people put in your position. It just is not right.

coaster · Post by **coaster** » Mon Jul 31, 2006 9:29 pm

I had to ramp up to 2 mg four times a day before Requip did anything for my RLS, and at that dosage it made me nauseous and drowsy. I switched back to Mirapex, which only makes me drowsy. :roll:

brandy · Post by **brandy** » Tue Aug 01, 2006 3:53 pm

I had nausea the whole time I was on Requip ( 2 1/2 years) and have begun Mirapex with extreme nausea. If I lie very still, I can avoid vomiting, but who wants to live like that? And there is certainly no sleep involved. My heart breaks for your struggle and I hope that your new doctor can be of a little more help. Ann, you mentioned that DA's do not work with 24/7 RLS. Is there any information (such as that published by doctors) that I could bring with me to my next appointment to perhaps explain why I am still having so much trouble even though my Mirapex dose is up to 1 mg? And, necron, I am so sorry about your severe symptoms and young age. I am 27 and have had severe RLS my whole life. I will hold out hope that the specialist will be of help. Do you have an appointment already scheduled? Keep us in the loop. On more thing, you will find that all of the research points to use of opiods, benzos and drugs such as gapapentin as indicated for those who cannot tolerate the side effects of DAs. You might print some of this research out and take it with you to your appt.

Post by **ViewsAskew** » Tue Aug 01, 2006 5:39 pm

Brandy, first I need to make sure I expressed myself clearly. There is no way ONE dose of a DA will control 24/7 RLS. A DA could do it - but not in one dose - you would need several.

I would think that the info supplied by the drug company should make that explicit, though, because it should list how long the drug works. http://bidocs.boehringer-ingelheim.com/ ... irapex.pdf

According to the document I linked above, it's half-life is 8 hours - so, at best, it is 1/2 as effective after 8 hours. It says that people with PD take it in 3 divided doses. So, that all agrees with what I've read online that Mirapex lasts about 6 hours or RLS - if you were to get your RLS under control with it, you would have to take it 3-4 times a day. You might get a break in the morning, so you might be able to take it 3 times a day, say 10 AM, 3 PM, and 9 PM. And, you might be able to take less that what you take now - say .50 mg each time, but there is no guarantee that you wouldn't need .75 to 1 mg every time - which would mean constant nausea for you.

Any doctor should understand that 1 dose of a medication that only lasts 6 hours cannot resolve symptoms that occur 'round the clock! I am so frustrated for you - I can't imagine that your doctor is so obtuse that he/she doesn't get that. Sometimes I wish I could pretend I was a doc - you all could have your docs call me - I'd set them straight :shock:

.

FYI - here is what is posted on Dr B's page - from it, you can assume that 3 times a day is what would be needed to control your RLS:
"Mirapex comes in 0.125 mg, 0.25 mg, 1.0 mg, or 1.5 mg tablets. It should be started at 0.125 mg (the smallest tablet) at 1/2 or one tablet taken 30-60 minutes before the onset of symptoms. For mild RLS, one can start with 1/2 or one pill 30-60 minutes before bedtime, but other doses (of the same 1/2 or one .125 mg tablet) can be added (up to three doses per day). Each of the starting 1/2 or one .125 mg doses can be increased if necessary every 5 days to a total .75 mg to 1 mg (6-8 of the .125 mg tablets) per dose. In a recent study, most patients were controlled by doses between 0.2 - 0.4 mg per day. The maximum dose for most RLS sufferers is about 3 mg per day. Higher doses usually do not add additional benefit."

coaster · Post by **coaster** » Tue Aug 01, 2006 11:47 pm

brandy wrote:... you will find that all of the research points to use of opiods, benzos and drugs such as gapapentin as indicated for those who cannot tolerate the side effects of DAs. ....

Yes. I need to take hydrocodone (Vicodin) for FMS pain and I've noticed it's also helpful in settling down my RLS. It's going to be difficult getting a doctor to prescribe an opiod for a supposedly non-pain syndrome unless you do the research and bring in citations from reputable sources indicating its use.

Post by **ViewsAskew** » Wed Aug 02, 2006 2:31 am

Coaster, the Mayo's algothm does just that - says that opioids work and should not be withheld if other classes do not work. I printed it out and took it to my doctor, as have many of us.

cornelia · Post by **cornelia** » Wed Aug 02, 2006 7:51 am

FYI: there is a DA for 24/7 RLS: Dostinex (cabergoline). I have a friend that says it has saved her life and has been on it for 4 years. Personally I hated the drug. But I think that in your country it is not allowed to be used for RLS?

Corrie

Post by **ViewsAskew** » Wed Aug 02, 2006 12:44 pm

Yes, that is the problem, Corrie. To take it would cost something like $50 to $100 US dollars every two or three days! It is only approved for pituitary hormones and insurance wouldn't cover it.

The patch will resolve this - but it won't be available until 2007-2008.
There are also working on some other extended release items - like Neurontin - but they won't be available for a awhile, either.

brandy · Post by **brandy** » Wed Aug 02, 2006 1:24 pm

Thanks for the info, Ann. I will discuss it with my doctor. She doubled my Mirapex dose because she thought it would last longer that way. She seemed to think that the Mirapex would eventually work on the 24/7 symptoms and in the meantime I could take Ultram for afternoon symptoms (which is the other completely unbearable time for me). The problem is that it takes 100mg of Ultram to calm things down in the afternoon and that makes me so sleepy. Right now, I have flexibility workwise and can come home and rest and work at night, but that will change soon. So, maybe trying divided doses of the Mirapex would work. I am not giving up on the nausea going away eventually (although it never did with the Requip). Necron, how are things going for you?

necron99 · Post by **necron99** » Thu Aug 03, 2006 7:54 pm

Thanks for all the replies. I ended up having to quit the requip after taking it for a week and a half, ramping up to .25mg a night. It was not helping with the RLS, I had no appetite in the morning, lots of weird side effects and once I was up to .25mg, I started throwing up in the morning. Between this and mirapex, I think DA's just are not for me.
Fortunately I was able to bump my appointment with my new doctor to next Tuesday, instead of in three weeks. I am excited to see what happens, and hope that she will be willing to truly be a ally in this with me, instead of just being scarred and annoyed that nothing so far has worked.

brandy · Post by **brandy** » Fri Aug 04, 2006 1:21 pm

Good luck, necron. If you can, it might not be a bad idea to print out the Mayo Clinic Algorithm and bring it with you. That way, you will be informed and you can discuss options with your doctor in such a way that you can get the help you need with the support of solid research. Let us know how it goes.