New to Forum Need advice about Ropinirole

[dsrouillard]

Hi all,

I am new to this forum, I was diagnosed with RLS and PLMD about two months ago. I was put on iron supplements because I was anemic buy my sleep doctor, my ferittin blood test came back normal range but on the low side, he said it could take up to three months to see the a good level of iron stores. I do have tingling in my right leg even during the day but worse at night. My primary care doctor wants me on Ropinirole, do any of you have success with this medication? I here this discussion about Augmentation and I don't know what that is all about. I would appreciate any help. Thank you

[ViewsAskew]

Hello and welcome. Tough situation!

This is my opinion - based on what we know, it is not a good idea to use any drugs in this class, including ropinerole, until at least your serum ferritin is high enough (though there is debate about what is high enough). Some doctors now believe you should never start with this class and instead should start with gabapentin or one of its sister drugs - gabapentin encarbil or pregabalin.

Tingling in your leg - please tell us more. Per RLS, there is always an urge to move. It isn't just because of the sensations that are uncomfortable, but almost an anxiety in your leg (or other body part that is affected). You just have to move. When you move, you immediately feel a bit better (or a lot better, depending).

Ask your doc for the actual ferritin value. That is important.

[badnights]

You have a sleep doc and a primary care doc, is that correct? What does the sleep doc say about the ropinirole? It sounds to me like your sleep doc is a bit more knowledgeable, that your primary care doc is using old information.

I agree 100% with Ann, you need to avoid the whole dopamine class of meds, at least until your ferritin level is above 100, but preferably not to use that class of meds as a first-time therapy, rather to try the Horizant (gabapentin encarbil) or Lyrica (pregabalin).

It is still not commonly known in the medical community that the dopamine meds, after initially helping, will almost always hurt RLS/WED patients. This hurt is more likely if your ferritin is below 75. Most specialists say our ferritin should be above 100. (Ferritin is a protein that stores iron in our tissues.)

[dsrouillard]

Thanks for the advice my ferritin level is about 29 and still within the range I guess but they say it should be higher.could you tell me if the tingling in the leg is part of this whole RLS thing it comes and it goes especially when I'm walking but at night it seems to be the worst

[ViewsAskew]

29 is VERY LOW for people with RLS!!!! Most of the experts suggest at least 75, if not 100 as a minimum.

I cannot say about the tingling...but I don't have tingling. Are you familiar with the 4 criteria?

Check these out and see what you think:
You have an urge to move your legs usually accompanied by uncomfortable leg sensations. These sensations are different from muscle cramps and numbness, and are often described as burning, creeping, crawling, aching or tugging. Usually starting in the lower legs, symptoms can spread to other parts of the body, such as the feet, chest, and arms. While often described as uncomfortable or irritating, sometimes these sensations can be painful.
Your symptoms are partially or totally relieved by movement. By moving or stretching, the unpleasant sensations can be partially or totally relieved. The kinds of movements that help are often repetitive, such as pacing, rocking or shaking.
Your symptoms begin or worsen during rest such as lying or sitting. Often people will experience RLS symptoms when inactive or not moving around. Lying down, traveling in a plane, or sitting through a movie are examples of situations when RLS may occur. While moving the affected limb can lessen the symptoms, once at rest the symptoms can intensify again.
Your symptoms are worse in the evening or night. There is a typical timing to the intensity or concentration of RLS symptoms. In the early morning, people with RLS often find some relief from the unpleasant sensations. However, as the day continues, symptoms get increasingly worse. Throughout the night, these irritating sensations and feelings often reach their peak.

The keys, to me, are not the sensation, but that you have an URGE to move and that moving helps. I liken it to an anxiety-like feeling that makes me need to jump up and move around.

[badnights]

The tingling is not likley to be RLS/WED if it is surficial, or if it starts or gets worse while you are walking. Can you describe your symptoms for us? Is there something other than the tingling? Reading thru Ann's list of the 4 criteria, where do they match your situation and where don't they?

Re ferritin, people without WED/RLS have different "normal" ranges than people with WED/RLS, but many doctors don't realize this.

[dsrouillard]

Hello I had a sleep study that showed I had RLS , my sleep doctor put me on Iron pills because my ferritin level was 15, yes while in bed or sometimes just sitting I feel I have to move my legs because they are uncomfortable, I don't get much sleep either, the tingling comes and goes.

[Polar Bear]

dsrouillard - you say that while in bed or just sitting you have to move your legs because they are uncomfortable.

But, do you have to actually get up and walk about?
And if you do so does this eventually relieve your symptoms?

[dsrouillard]

My legs need to be moved, they are restless, however I don't usually get out of bed, however when I do my legs feel better

[Polar Bear]

So you are saying that you do not have to get out of bed and walk?

[dsrouillard]

Mostly I can stay in bed, however I would need to move them. I don't know how they come up with the diagnoses however I had a sleep study and that was the diagnoses plus they tested my ferritin, they also said I have PLMD.

[badnights]

WED/RLS cannot be detected on a sleep study. The diagnosis can only be made by talking to the patient, because the primary symptom is the un-ignorable urge to move at night when you're resting. Although it's not clear from your description here, let's assume you have WED/RLS.

Based on what I know, I don't think you should take ropinirole until your ferritin is over 75. The iron pills should raise your ferritin. (Note that I'm not a doctor.)

The best way to take iron is 1 or 2 pills a day that each have 65 mg elemental iron, with 250-500 mg vitamin C, preferably all at once on an empty stomach. (but if that causes pain, take a bit of food with it).

I think you should trust your sleep doctor who put you on iron, more than your GP who wants to put you on ropinirole. Your GP does not seem to be aware that ropinirole shouldn't be prescribed to WED/RLS patients with ferritin <75. Also, many WED/RLS specialists don't regard ropinirole as first-line treatment anymore, because it can make the disease worse, especially in people with ferritn below 75. (This is called augmentation).

If you need symptoms relief in order to get enough sleep, instead of ropinirole, your doctor should try you on one of the alpha-2-delta ligands used for WED/RLS: gabapentin, pregabalin/Lyrica, or gabapentin encarbil/Horizant. The last is probably most effective, but most expensive too. The first is erratic but can be effective and is very cheap. These medications are much safer for a person with low ferritin, and should provide some relief from your symptoms and help you get some sleep. To help your doctor make this decision, consider taking some information produced by the RLS Foundation or printed in medical journals. Some specific advice is below.*

Meantime, pay attention to other things in your life that might be making the WED/RLS worse. Anti-histamines are the worst culprit. Anti-nausea medications, anti-psychotics, and for some people some anti-depressants can make things worse. Coffee is bad for a lot of us. Some people seem to have dietary triggers (aspartame; dairy products). Vitamin D deficiency might make things worse.

*Specific advice on information to bring to your GP
The RLS Medical Bulletin from the Foundation has some good parts in it, although they don't emphasize the iron in the right places (presumably because the Bulletin has been updated in bits and pieces over the years):
- Go to the RLS Foundation website, click Member Portal at the top, click Publications in the drop-down list, and scroll down to Information for Healthcare Providers and download the RLS Medical Bulletin.
- If you are not a member, go to http://www.rls.org/ and click Join or Renew - the red box at top right. (If you are broke and the small membership fee, which goes to support research as well as creation of these documents, is too much, you can email the Foundation about getting a scholarship (free) membership: info@rls.org or (507) 287-6465.) It's worth it, to access these and other Foundation publications.
- Read the section on treatment of chronic persistent RLS beginning on page 9 and the following section on treatment of Refractory RLS, then the section on Iron Deficiency beginning on page 14 (for your own knowledge).
- Highlight the following bits to show your doctor:
- - Highlight on page 9, first sentence of the second full paragraph begining "It is important to note that the use of dopamine agonists is often complicated by augmentation...." (highlight the entire sentence) and the last sentence of that parapgraph "Because of this, many healthcare providers are beginning to use an alpha-2-delta ligand as first-line treatment.".
- - Highlight the entire next paragraph beginning "Not all agree with this practice; however...".
- - Under Refractory RLS (still on page 9) highlight point #1 about iron stores.
- - In Table 10 (Dosing Schedule), in the Alpha-2-delta row, highlight the Initial Dose info.
- - on page 14, under Iron Deficiency, highlight the first 4 sentences (ending at "...promote absorption)." then in the next paragraph, the first two sentences, ending with "...more rapid response than is likely wiht oral iron"