Need advice

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
jul2873
Posts: 396
Joined: Thu Nov 15, 2012 7:32 pm

Need advice

Postby jul2873 » Wed Mar 11, 2020 4:41 pm

I've been using kratom for the last 8 years to manage the RLS symptoms. It's worked very well, and still works. I just need more of it now, and a good night is one where I'm only up twice for another dose. An average night has me up 3 or 4 times, and, of course, a lousy night has me up even more, although I rarely have one of those. In addition, I've just added some edible pot at night, which gives me evenings that are pretty much symptom-free. I can't use the pot during the day because the state I live in automatically convicts you of felony DUI if it's in your blood test and you've been driving. So I'm really careful never to use it when I might have to drive, which is fairly often since my husband no longer has the vision to drive very much.

Here's my issue. I've developed enough of a tolerance for kratom that, until I found the pot, it wasn't working well. Now, with the eidble pot, it's working better. Meanwhile I had made an appointment with a neurologist. He recommended iron infusions. Said my iron was so low that that might be enough. Meanwhile he wants me to take a 2 mg tablet of ropinirole once a day, said it's timed release.

I'm very afraid to start on it. I've never taken any of the dopamine drugs and nothing I've read on here makes me want to take one. I tried to share my worried with him, but he dismisses anything on the internet.

I'm not sure what to do. I'm 76, and so am looking at maybe, if I'm lucky, 10 more years. So maybe worrying about augmentation isn't a big deal for me.

My primary care, who I like very much, about a month ago gave me a bottle of oxy for me to use in situations that the kratom/pot isn't strong enough--long airplane rides, long car rides etc. So with the oxy as an emergency backup I'm doing okay.

Here's my question: Should I try the ropinirole or just talk with my primary care to see if she'll give me some more oxy every so often, like every couple of months maybe. And, of course, do the iron infusions. (Any iron pills at all, even gentle iron, makes me throw up within about ten minutes). I know she isn't allowed to prescribe much oxy. My state does have medical marijuana which the neurologist can prescribe (my primary cannot) but he said he can't unless first I've tried prescription drugs, like the ropinirole. Getting the pot isn't really a problem for me, as our state adjoins one where it is legal, and I can just drive up there and buy some. But, of course, if I'm ever stopped and found with some on me, since I don't have a medical marijuana card, it will be illegal for me to have it.

Any suggestions what would be best for me to do? I have to say that I trust you guys much more than the neurologist. I do appreciate that you've taken the time to read this long posting. Thanks so much.

stjohnh
Posts: 1058
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Need advice

Postby stjohnh » Wed Mar 11, 2020 8:38 pm

Hmm.. If the ropinirole is short term until you get your IV Iron, then it doesn't seem to me much a problem. OTOH, if you don't really need it, why not continue as you are doing until the IV Iron. Be aware, only about 1/2 of people who get IV Iron will respond to it. It is not known why this occurs. Also, it can take a month for the IV Iron to have its main effects, doesn't start working immediately, even if you are a responder. Also, the guidelines recommend only Injectafer, not other types of IV Iron (there are about 10 different types of IV Iron).

If the ropinirole is for long term use, it works fairly well for controlling urge-to-move, not very well for insomnia. Marijuana better for insomnia. If for long term use, I would ask for regular immediate-release ropinirole, much easier to adjust the dose, and long acting ropinirole (Requip XL) is likely quite expensive. Regular generic ropinirole is inexpensive. Augmentation is more likely to occur at higher doses and with low iron levels.

Regardless of the time planned for ropinirole, I would continue the marijuana and kratom and add the ropinirole to it. Much more likely to get good control of your symptoms and likely you would need a smaller dose of ropinirole, which in turn means fewer ropinirole side effects and less likelihood of augmentation.

Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

Polar Bear
Moderator
Posts: 7758
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Need advice

Postby Polar Bear » Wed Mar 11, 2020 9:04 pm

What I don't get is why a neurologist would start you on ropinerole at 2mg !! If you did consider taking it you should start at the lowest possible dose.
Dr B suggests that the max daily dose should be 1mg even though the provider says up to 4mg daily.

Are you going for the infusion and how long would it be until you get it.
Depends how quickly you can get the infusion and could you get there continuing as you are with the kratom, oxy. Are you using any other prescribed medication for rls.

Would would the penalty for bringing pot across the border.

Kratom is illegal where I live but I order it from another country. I reckoned if caught I am unlikely to be thrown in jail (at 70). And I no longer need to worry about declaring it when seeking employment. Indeed if I was called to Court I'd happily speak up for all RLS sufferers who need to resort to kratom/pot.

Have you tried gabapentin or lyrica.
If you go for the ropinerole keep it very low.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

jul2873
Posts: 396
Joined: Thu Nov 15, 2012 7:32 pm

Re: Need advice

Postby jul2873 » Thu Mar 12, 2020 12:37 am

Holland and Betty, thank you both very much--such good info. and suggestions. I'm going to follow them all! I think I'll try it with just the kratom/pot while I get the infusions, and then see how things are. And meanwhile I'll ask my primary care to prescribe me a much lower dose ropinirole. Kratom is still legal where I live, and we don't have any state border guards so there is very little chance I'll ever get stopped and have my car searched for marijuana. And Betty, if they do, I figure I'm old enough no one will try to press charges. Omg, imagine being stuck in a cell with no meds.

Thanks esp. for the info on iron transfusions, Holland. I'll be sure to take it with me when I go to set it up.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Need advice

Postby badnights » Thu Mar 26, 2020 4:33 am

GAK I'm late here but absolutely agree not to start ropinirole at 2 mg, and heck, you've hung on this long, why start it at all, given the evidence that taking a DA with low ferritin correlates with a high risk of augmentation. (e.g. paper by Frauscher et al in the page accessed by the link in my signature block)
And meanwhile I'll ask my primary care to prescribe me a much lower dose ropinirole.
Yes, like 0.25 and cut that in half (if you can - those pills are shaped wrong for splitting). And ask for a prescription for pregabalin or if you can afford it Horizant (avoid gabapentin if you can) too. If you have to take something, try the Horizant first, before the ropinirole.

I really think you can get by without adding either med until you find out if you can get an infusion.

You;ve noticed something that QyX, I think, first pointed out to us, which is that opioids and pot complement each other, so that lower doses are as effective as higher doses when they are taken in combination.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

debbluebird
Posts: 2100
Joined: Mon May 21, 2012 3:27 pm

Re: Need advice

Postby debbluebird » Thu Mar 26, 2020 8:30 am

If you decide to start the ropinirole, then start at the lowest dose, like everyone says. Then only take it for a few days at a time. Like 3 on and 5 off. You have a better chance of not augmenting. Plus, get the infusion. Maybe then you'll be able to stop the ropinirole.


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