Don't know what to do

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.
Post Reply
mjenni27
Posts: 2
Joined: Tue Nov 24, 2015 12:06 pm

Don't know what to do

Post by mjenni27 »

Was on gabepentin. Helped with legs but was sore EVERYWHERE. Doc took me off and put me on requin 0.5. I am miserable all the time. Cannot sit for 2 hrs. Legs jerking on their own. If I thought amputation would help, I would cut my leg off myself. Have sciatica which makes it worse. Don't want benzos. What should I do? Have a 12 hr flight in October.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Don't know what to do

Post by stjohnh »

Maybe you can tell us more about what medicines you've been on in the past and exactly what your symptoms are. Mirapex is another alternative to requip and may help. If you have tried Requip, mirapex, and neupro and they have not helped, you may be a candidate for methadone.
Blessings,
Holland

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Don't know what to do

Post by ViewsAskew »

mjenni27 - as Holland said, tell us a bit more, please, so we can better guide you.

Tell us more about the Requip. Has it ever worked? How long have you taken it? Did the symptoms get worse when you started the Requip or did it never help at all? Things like that.

We will do our best to help you.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Don't know what to do

Post by badnights »

How long have you been on Requip? It might be useful for you to read up on augmentation, so that you can determine if it's happening to you. Augmenation is a worsening of RLS/WED caused by the dopamine medications like Requip. It doesn't happen to everyone but it's very common. It's more common for people with higher doses than yours, and people who have been taking it a long time, but it can happen within days and at low doses for some of us.

You may be augmenting if your symptoms:
start earlier now,
are more intense,
start sooner after you sit or lie down, or
have spread to other body parts -
as compared to how they were before you started Requip.

If you're augmenting, there are a few approaches
- adding an earlier dose, which tends to just delay the inevitable,
- getting off the Requip and switching to a long-acting dopamine med like the rotigotine/Neupro patch,
- getting off the Requip and switching to a completely different class of medication (anti-convulsant or opioid), or
- getting off the Requip til the augmentation is over with and withdrawal is complete, then starting a schedule of alternating dopamine agent and other class of medication.

If you're not augmenting, your medication may not be enough to cover off your symptoms. This is where it's helpful to know the answers to the questions Holland and Ann asked. Increasing the dose of Requip increases your risk of augmentation, but if your ferritin levels are high enough, it is probably OK to increase up to 1 mg (which is the max acceptable dose for WED/RLS patients according to some specialists). Ferritin is a protein that stores iron in your tissues, and for most people it is normal to have levels as low as 20, but for people with RLS/WED it is important to keep levels of ferritin in our blood above 75 or even more. This is something to talk to your doctor about.

If your doctor has never heard of augmentation, make sure you give him/her some literature, see the link below my name for some good stuff - try the Foundation brochure What is Augmentation, and the Johns Hopkins extract which explains the importance of ferritin.

The important thing to realize is that there is a way to relieve your agony. We may not know exactly what that is, yet, but we'll do everything we can to help you work with your doctor to make things a lot better than they are now.
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.

mjenni27
Posts: 2
Joined: Tue Nov 24, 2015 12:06 pm

Re: Don't know what to do

Post by mjenni27 »

20 yrs, no meds. Started ropinirole last Aug for a month. Changed doctor and took months to get a new prescription. Meantime saw my apnea doc. He switched me to 100 gab. Worked miracles BUT. Joints hurt so bad it wasn't funny. Caused a tia. My neurologist switched me back to ropin. 0.5 MG a day. Worked initially but Has been steadily getting worse since March when I was switched. Before legs involuntarily kick. Pain throughout. But especially at inside of joint at hip and groin.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Don't know what to do

Post by badnights »

There are two things that come to my mind. One is, do you really have WED/RLS? The other is, if you have RLS/WED, are you augmenting?

To answer the first, are you confident that you have RLS? Knowing that you have to meet 5 criteria to have RLS/WED:
- you have an urge to move along with pain or distressing sensations in the legs, and for some people, in other body parts
- this urge & associated sensations come on when you stop moving to sit or lie down
- the urge & sensations are relieved at least partially by movement, for at least as long as you are moving
- the urge & sensations come on worse in the evening and early night, but as a patient gets older, may happen all day long
- the symptoms can't be accounted for by another disorder.

If you are confident you have this disease (and if it's been going on for 20 years, and you want to cut your legs off, well, that sure does sound familiar :()
then it's time to look at the augmentation information I posted earlier. Follow the link in my signature for more info, please keep posting as you learn more and have questions or just want to scream, believe me, we've all been there!
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.

veldon75
Posts: 51
Joined: Sun Sep 21, 2014 3:45 pm

Re: Don't know what to do

Post by veldon75 »

I know how you feel about wanting to cut them off, but the stubs would still be jerking, I had surgery on my foot and arm recently couldn't walk on my foot for a month or use my arm so I was very thankful to have them both after that Good luck this is a miserable problem! :(

Post Reply