5 Weeks Until Specialist Visit and Ropinirole Doesn’t Work Anymore

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RodneyDangerfield
Posts: 2
Joined: Sat Sep 26, 2020 2:31 pm

5 Weeks Until Specialist Visit and Ropinirole Doesn’t Work Anymore

Post by RodneyDangerfield »

Hi everyone!
I’m 42 and have been suffering from RLS for years. I have iron-deficiency anemia resulting from bariatric surgery. Primary care doc prescribed 0.5mg ropinirole starting in March 2019 and I’m now taking 2.75mg. Ropinirole doesn’t help anymore and seems to cause symptoms to start. I have an appointment on 11/2 with Dr. Ondo at the Houston Methodist Movement Disorders Clinic. I don’t know if I can hold out until then. I also take thyroid meds, blood pressure meds, Trokendi XR 100mg for nerve pain (related to herniated disc surgery in 2017 - it may be meralgia paresthetica), 50mg desvenlafaxine for depression. I luckily get about 4 to 5 hrs of sleep per night and just started transcranial magnetic stimulation therapy in order to get off the antidepressant.
RLS symptoms start at 11AM and last all day. Most recent anemia study (approx 3 weeks ago): serum iron = 16 mcg/dl (ref range 40 mcg/dl - 190 mcg/dl); ferritin = 5 ng/ml (ref range 16 ng/dl - 232 ng/dl); % FE sat = 4% (ref range (16% - 45%); TIBC = 396 mcg/dl (ref range 250 mcg/dl - 450 mcg/dl); hemoglobin 9.8 g/dl (ref range 11.7 g/dl -15.5 g/dl)

Should I try to get primary care doc to switch me to neupro patch before meeting with Dr Ondo or should I beg my pain doctor for something like Tramadol to take 2x per day until I can see Dr Ondo?

I’m so mad at myself for waiting until the RLS became unbearable before making specialist appointment. Also mad at primary care doc for not warning me Ropinirole could make things worse.

I enjoy reading y’all’s posts!
-Heather

Polar Bear
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Re: 5 Weeks Until Specialist Visit and Ropinirole Doesn’t Work Anymore

Post by Polar Bear »

You are now taking 2.75mg Ropinerole. Although officially the guidelines state Ropinerole max daily is 4mg most RLS experts will agree that daily max should be around 1mg so you are well above what we RLS sufferers would consider to be our daily max. It is possible that you are augmenting and it would be worth your while reading through the Augmentation Forum. If you are augmenting the only solution is to get off the Ropinerole, this would require weaning off it.

You should also bear in mind that anti depressant medication can aggravate or even cause RLS, again slow weaning is generally the way to go to get off it.

Primary care doctors to not seem to be fully aware of the augmentation side effects of Ropinerole or other DAs and if RLS symptoms get worse they are inclined to increase the medication and not think of augmentation, that is if they even know about augmentation. Most are even less able to treat augmentation.

Your appointment with Dr Ondo is only a few weeks away, although that is not much comfort when you are in the throes of severe RLS symptoms.
Personally, I'm not sure if it is worth changing to Neupro at present when you are seeing Dr Ondo relatively quickly as it may take a few weeks to adjust the Neupro dosage to find what would work for you.
If your doctor is willing to prescribe Tramadol it might give a speedy result while you wait to see Dr Odo. Also you would know if the Tramadol worked for you. Others may suggest a different approach.
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

Rustsmith
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Location: Colorado Springs, Colorado

Re: 5 Weeks Until Specialist Visit and Ropinirole Doesn’t Work Anymore

Post by Rustsmith »

I like Betty's suggestion about trying Tramadol. But since you are already taking desvenlafaxine for depression, be warned that Tramadol is also an SNRI so you would be doubling up on anti-depressants and that can cause a rare condition called serotonin overload. Most doctors are not familiar with the anti-depressant properties of Tramadol since it isn't typically used for that purpose, so it is something that you should also about.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

stjohnh
Posts: 1164
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: 5 Weeks Until Specialist Visit and Ropinirole Doesn’t Work Anymore

Post by stjohnh »

I agree, for the immediate period, try to get tramadol. For a more permanent solution you should be on regular IV Iron infusions. You are seriously iron deficient (blood, body AND BRAIN).

RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

RodneyDangerfield
Posts: 2
Joined: Sat Sep 26, 2020 2:31 pm

Re: 5 Weeks Until Specialist Visit and Ropinirole Doesn’t Work Anymore

Post by RodneyDangerfield »

Thanks for the replies. I’m not happy with my primary care doc but will make an appointment to talk with him about IV iron infusion. I’ve had them before but my hemoglobin levels were lower than they are now. Due to my gastric bypass, I just don’t readily absorb iron from dietary sources or supplements. My next pain doc appointment is on 10/6 and I will ask about tramadol.

My hair has been falling out and I’m getting winded walking around the grocery store or taking my dog for walks or just going up the stairs. I’m just a mess!
-Heather

stjohnh
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Re: 5 Weeks Until Specialist Visit and Ropinirole Doesn’t Work Anymore

Post by stjohnh »

RodneyDangerfield wrote:
Mon Sep 28, 2020 3:54 pm
Thanks for the replies. I’m not happy with my primary care doc but will make an appointment to talk with him about IV iron infusion. I’ve had them before but my hemoglobin levels were lower than they are now. Due to my gastric bypass, I just don’t readily absorb iron from dietary sources or supplements. My next pain doc appointment is on 10/6 and I will ask about tramadol.

My hair has been falling out and I’m getting winded walking around the grocery store or taking my dog for walks or just going up the stairs. I’m just a mess!
-Heather
Hair loss is one of the many symptoms of iron deficiency.
Blessings,
Holland

badnights
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Re: 5 Weeks Until Specialist Visit and Ropinirole Doesn’t Work Anymore

Post by badnights »

I want to meet the doctor who put you on ropinirole when your iron stores were so seriously depleted that your ferritin was only 5 ng/ml. And give him a piece of my mind. I'd like him to stand in your shoes for even an hour, to know what he's done.

WED/RLS is essentially a brain iron deficiency, as Holland explained. We can have enough iron in our blood and liver and other organs while being deficient in the brain. Treating the iron deficiency is sometimes enough to make the WED/RLS go away. On the other hand, if ferritin is below 75, taking a dopamine agonist like ropinirole has been associated with increased risk of augmentation.

Did you have RLS/WED before the bariatric surgery and iron-deficiency anemia? If not, then correcting your severe iron deficiency should also correct your WED/RLS.

A medication that could have been prescribed while waiting for iron to take effect is Horizant. It's in a different class and does not cause augmentation, and is relatively effective against WED/RLS (but not generally 100% effective). Beware a possible side effect of severe to suicidal depression, which is rare, but thought to be a bit more common in people with a history of depression.

Tramadol, if you can get it, would be a better option; even better would be a more potent opioid. Definitely worth enquiring. You could also order kratom, if it's legal in your state. It's an opioid-like herb that can be effective against WED/RLS (search this board for more info on that).

Definitely your primary needs to be educated about:
- augmentation (an iatrogenic worsening of WED/RLS caused by the very medication that is supposed to help it); many specialists now think DAs should not be first-line meds, and that ropinirole dose should never go above 1 mg for WED/RLS;
- Horizant is FDA-approved and might be the better choice as a front-line medication;
- iron!!! - low iron causes RLS/WED!!! Correct the one, correct the other. (not so simple all the time, but sometimes!); and
- taking DAs with low iron stores is a big No-No! That's like guaranteeing the patient augmentation.

I wish you luck!! How come you can't get your iron corrected? Has anyone suggested/given/offered frequent repeated infusions like Holland suggested? How does bariatric surgery cause ID anemia?
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.

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