Strategy for coming off Ropinerol

[CrusoeCortez]

I started getting RLS when I had Long Covid about a year ago. About 7 months ago it was getting so bad I was prescribed Ropinerol. Since then I've had to increase the dose to 1mg as my symptoms have got worse due to augmentation.

I have now asked my GP to help me come off the Ropinirole. I've had my ferritin level checked, and it's improved from 49 a year ago to 70 now. However, this is still pretty low, so my GP has prescribed me ferrous fumerate 210mg twice daily. She has also provided me with 0.25mg as well as my usual 0.5mg Ropinerol tablets to make it easier for me taper my dose.

My question is, should I wait for a couple of months for my ferritin levels to increase or should I start reducing the Ropinerol now?

[SueJohnson]

No need to wait. Start reducing now.

[CrusoeCortez in reply to SueJohnson]

I know i don't need to wait, I just thought, if the root cause has been alleviated I might not suffer so much from the withdrawal.

[SueJohnson in reply to CrusoeCortez]

The problem is it will take several months for your ferritin to get over 100 and meanwhile you are suffering. And getting your ferritin over 100 only helps 60% of people and it only rarely eliminates their symptoms. However, when you are ready to reduce: reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end.. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at

Https://mayoclinicproceedings.org/a...

[Madlegs1]

What happened at the time the symptoms started?That is one key.

Did you start a new medication! PPI, antihistamines, antidepressants or any other?

The iron is a good start, but be prepared for it not to be a complete solution.

Keep an intake diary to find possible triggers.

Good luck.

[Hidden in reply to Madlegs1]

I think his RLS started with his Covid infection or now what’s known as long Covid. My guess is elevated hepcidin due to the infection and even post infection his body still thinks it’s under attack.

[CrusoeCortez in reply to Hidden]

Yes, you're right, I've not made significant changes to diet or exercise and I'm not on any other medications, so apart from the Long Covid, I can't think of any other triggers.Maybe LC reduced my ferritin and with a genetic predisposition (my mum has RLS) it led to onset?

[Hidden in reply to CrusoeCortez]

My best guess is that due to the long Covid your body is giving off lots of a hormone called hepcidin. This happens whenever an assault or invasion of the body occurs. It’s one of only a few tricks our body has to try to kill off enemies ie microbes by not allowing iron to enter the bloodstream. We who are pre-disposed to RLS really rely on that blood iron because our brains are apparently incapable of storing much iron…for a rainy day, or in our case a bad night. Blood iron plummets at night in all humans regardless of infection. We can’t handle that drop at night and hence get RLS. Iron is like the grease and glue that keeps our dopamine receptors chugging along. Getting back to you, I assume that because of long Covid and hepcidin your blood iron levels are abnormally low. My suggestion is for you to take 25 to 50mg of ferrous bisglycinate one hour before bed on an empty stomach. It relieves my RLS in one hour and for the night. Must be repeated every night however. Not everyone on here is as lucky with the iron as I am. However, there are about a dozen people who do get immediate relief from iron alone.

[LotteM in reply to Hidden]

SanAndreas, where did you grt the info that hepcidin increases during an infection? It is known that ferritin does, to reallocate (originally) stored iron within the body. I suspect in response to a larger request for iron during infection. If so, increased levels of hepcidin seem counterintuitive. But, many processes are different than "we" thought initially or logically.

[DicCarlson in reply to Hidden]

Fascinating! It IS all about the iron!

From Wikipedia... "There are many diseases where failure to adequately absorb iron contributes to iron deficiency and iron deficiency anaemia... Studies have found that measuring hepcidin would be of benefit to establish optimal treatment, although as this is not widely available, C-reactive protein (CRP) is used as a surrogate marker."

C-reactive protein is also a general marker for inflammation. Generalized inflammation from Covid or other sources can contribute to RLS by inhibiting hepcidin and iron absorption.

en.wikipedia.org/wiki/Hepcidin

[Hidden in reply to DicCarlson]

I’m not seeing that quote in the article. Infections “induce hepcidin”, not inhibit it??? I quote:

Hepcidin induction during infection causes depletion of extracellular iron, which is thought to be a general defense mechanism against many infections by withholding iron from invading pathogens. Conversely, by promoting iron sequestration in macrophages, hepcidin may be detrimental to cellular defense against certain intracellular infections, although critical in vivo studies are needed to confirm this concept. It is not yet clear whether hepcidin exerts any iron-independent effects on host defenses.

ncbi.nlm.nih.gov/pmc/articl...

[DicCarlson in reply to Hidden]

Yes indeed - induce Hepcidin not inhibit it. THIS is indeed complex biochemistry!

"Inflammation can also cause hepcidin production to increase. The increase in response to inflammation helps our bodies defend against invading pathogens. Foreign invaders, like bacteria and viruses, need iron to survive and thrive just like we do. Therefore, the body responds by increasing hepcidin and removing a lot of iron from circulation so it is not available to “the invaders,” essentially stunting their ability to grow and replicate. The result? A lot of iron being put into storage and converted to ferritin.

Ferritin is usually a good measure of overall iron status, but in the presence of inflammation, it functions as an immune response, not as a marker of iron status."

blog.insidetracker.com/how-...

[Hidden in reply to DicCarlson]

Yes, yes, yes. Bingo. I read that there isn’t many anti-hepcidin drugs out there. One I know of is heparin. I would love to know if anyone with RLS who was put on heparin saw improved RLS symptoms. I believe our bodies always have some heparin floating around. It’s lowest in the morning, rises through the course of the day and drops low again by early evening. During this time, the hepcidin does it’s job of sequestering iron out of our blood in preparation for the dark hours when we sleep. And this is when RLS kicks in. This pattern is just the opposite in nocturnal animals.

[Reb0013 in reply to DicCarlson]

Hi Dic, this is true; my hematologist just went over this very scenario with me this week. I still have a 413 ferritin 1.5 yrs after an iron infusion. I was a 13 ferritin when I had the iron infusion. I went to 750 after the infusion and then came down to 350 but then went back up to 413 and seem to be stuck here. It hasn't come down; he attributes it to inflammation.

[CrusoeCortez in reply to Reb0013]

And have you found these changing levels of ferritin affect your RLS symptoms much?

[Reb0013 in reply to CrusoeCortez]

Interesting question and thanks for asking; I graphed iron panel results and documented how I was feeling (in terms of restless legs ) over the course of the infusion. I also was treated for H. Pylori which can trigger RL and I changed my diet to more or less a FODMAP diet during this time so there were 3 main data points. I had RL still every night for the first 3 weeks after the iron infusion even though my ferritin was at it's highest from the iron infusion 750 mg. My RL went away completely after about month 2 after the infusion and my ferritin was around 500mg. at that point. My RL stayed away for the most part for about 14 months, then about 2 months ago I began having them again every night but not as intense... but it still prevented sleep and I was up and down with my home remedies in the middle of the night. Ferritin was around 400 mg. When I take the Hirsuta I don't have them. My hematologist is attributing the high 400 mg ferritin to overall inflammation in my body, yet I am not diagnosed with any other illnesses other than I do have painful osteoarthritis in my hands. I am very athletic, lean and exercise regularly. I am on a mission to try and find out what this other inflammation is about... I have an appt with a rheumatologist in January to see if the osteoarthritis is the culprit that is triggering the RS and causing a falsely elevated ferritin. So, in conclusion... I do still have the RL even with a perfect iron panel and an elevated ferritin but I don't have the involuntary leg spasms and shaking I had before the iron infusion. I am not on any other medications for any other illnesses.

[CrusoeCortez in reply to Reb0013]

Wow, that's really interesting!So I'll be incredibly lucky if iron alone cures this. But it'll probably help.

Incidentally, I had bad arthritis in my hands until I gave up cows milk, cheese and yoghurt but have no issues with goat or sheep milk and their products.

[Reb0013 in reply to CrusoeCortez]

Yeah, my fingers swell and hurt every day; I grew up on a large farm working until I went to college. Then I was in an industry that still required the use of hands for lifting heavier things. I am a female and probably have used my hands more than I should lifting things. Six months ago I cut out cow's milk and cheese and went to all sheep or goat. I can't say that I've seen a difference in my arthritis ( I continue to kayak, bike, work out at gym, yard work, etc though so I'm probably keeping them in contant aggitation) I have noticed a difference in my overall gut feeling though which I am attributing to the switch. As far as the iron infusion, it did help tremendously... it just didn't eliminate my RL all together - but it gave me a few months reprieve so that I gained new hope in overcoming this horrific condition and then went on to try and put some new pieces of the puzzle together. I didn't mention that I have a topical cream I get great relief from- I order from amazon and I find it amazing. I don't use it every night as prevention but rather I use it on demand when a particular area of my legs or shoulders has a bout with the restlessness. It calms it down after about 15 minutes. Sometimes I facilitate with a warm heating pad after I've applied but the warm pad isn't necessary to still get the relief it provides me. Again, I mention "me" because everyone is different but I do not go anywhere overnight without this topical cream. It's called Deep Blue Rub by doTERRA. It's an essential oil blend. Can't remember the cost offhand but well worth whatever the cost is.

[Joolsg]

I'm shocked that GPs are STILL prescribing Ropinirole! I'm aware they aren't taught anything about RLS at medical school or during training, but it is really worrying that this is still happening.

My advice would be to start reducing Ropinirole now by 0.25mg every 2 weeks.

As your GP put you on it, ask for help when withdrawal symptoms kick in. A low dose opioid like tramadol.or codeine will help. Or medical cannabis.

In the meantime, keep taking iron tablets.

You may benefit from an iron infusion and that raises levels more quickly.

St George's in London will do iron infusions for RLS. And the Royal Cornwall hospital in Truro.

Hopefully as you've only been on Ropinirole for 7 months, the withdrawal won't be too horrible.

Maybe suggest your GP educates herself about RLS by directing her to the Mayo algorithm. It has the latest, expert advice on treatment of RLS. The UK NICE guidelines are out of date.

mayoclinicproceedings.org/a...

[LotteM]

Just about the iron. It is bow known that iron once a day, or once every other day increases iron as fast or even better than twice or three times daily, which was the 'old' standard. Given that ferrousfumerate is isually quite constipating, taking it less frequently without giving in on the potential to raise iron level, is preferred, I think.