Pregablin withdrawal

[Baz33]

Hello ,I'm on week 6 of reducing pregablin, 25mg every 2 weeks ...now at 225mg The only thing reducing symptoms are 4 x iron tablets just before bed, this knocks me out ...is this OK?

Thankyou .

[SueJohnson]

I'm confused as to what is your question ???

However I don't think I ever told you how to take iron. If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron so check with your doctor. Otherwise, take your iron with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.

Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

What iron tablets are you taking and how many mg in each?

[Baz33 in reply to SueJohnson]

Iron bisglycinate...

[DesertOasis in reply to Baz33]

Yes, the bisglycinate not only rid me of RLS but it knocked me out for about the first five years of use, then less so. Still as effective as ever for RLS. Then someone on here told me it was likely the “glycine” in it that knocked me out. Welcome back to iron man club. It used to help you as well, as I recall.

[Baz33 in reply to DesertOasis]

It did but I had to stop after my infusion as my levels were too high x

[DesertOasis in reply to Baz33]

As I recall, the infusion helped your energy and maybe depression, but not your RLS?

[Baz33 in reply to DesertOasis]

The depression was a direct result of the gabapentin, that was not good for me at all

[Hotrodder in reply to Baz33]

I am wondering, how high did your level get as I am thinking of getting a iron infusion.

[DesertOasis in reply to SueJohnson]

Sue, why would you advise someone to take the iron every other night (and underline it for added emphasis) when they just got done telling you it rids them of the RLS AND puts them to sleep AND is the only substance they have found that provides this type of immediate relief??? If they take it every other night, as you advise, that means they’re only going to sleep every other night.

Why Sue? Why?

I believe I gave you this article once before: ncbi.nlm.nih.gov/pmc/articl....

Then there’s this very recent large study that leans back toward multiple doses in a day because it resolved IDA in 89 days versus 92 days for both the single dose per day and every other day regimens: ccjm.org/page/asn-2023/iron...

If you want another clinical trial of everyday versus every other day, plus a comprehensive analysis of numerous other such trials, there’s this paper:

journals.lww.com/md-journal...

Bottom line - in terms of all iron parameters (ie ferritin, serum iron) there is NO difference between single daily dose, double dose every other day, double dose every day, single dose every other day. About five groups in all - and all with same iron parameter outcomes, give or take a molecule.

Yet somehow I know you will continue to “emphasize” the importance of an every other day dosing schedule rather than truly helping people by advising them of the iron “every” night trick.

[Munroist in reply to DesertOasis]

If someone gets immediate relief from RLS after taking iron then clearly that's the way to go and taking it every night would be a no-brainer. Unfortunately not all people experience that relief and take the iron supplements to increase their ferritin levels which has been shown to help some sufferers. There are many articles which show that raising ferritin is best achieved with alternate day dosing which aims to avoid the inhibitory effects of hepcidin which rises immediately after dosing. The differences are not huge but as raising ferritin can take some time with oral supplements, every little helps. Again, raising ferritin doesn't guarantee relief but it's a better option than most of the available medications so it's worth trying before embarking on a lifetime of medication, most of which carry significant side effects. Here are a couple of articles.

Medical Case Report on Repeat Treatment of Restless Legs Syndrome with Intravenous Infusion of Iron,

pubmed.ncbi.nlm.nih.gov/347...

Alternate day versus consecutive day oral iron supplementation in iron-depleted women: a randomized double-blind placebo-controlled study, thelancet.com/journals/ecli...

[DesertOasis in reply to Munroist]

Then the solution is to tell members about both ways and how natural and quite frankly wonderful the iron is. And from my reading of all the studies, when there is a difference, it’s relatively insignificant. You said the difference is “not huge.” That’s an understatement. What is huge is when the nightly ferrous bisglycinate not only rids you of RLS but knocks you out.

[SueJohnson in reply to DesertOasis]

I missed that he got immediate relief. Sorry.

[Munroist in reply to SueJohnson]

No problem. Baz33 said the iron knocked him out which I assume means he got some sleep and if so then I’d say stick with that. If only it worked for everyone.

[DesertOasis in reply to SueJohnson]

Omg, no need to be sorry. We’re family. Families disagree. Whenever I hear this phrase, I think of this site: “there are mountains in our way, but we climb a stair everyday.” We really do.

[ChickenTwisty]

Evidence for Withdrawing Pregabalin for RLS and its Implications

Pregabalin and RLS:

Pregabalin is a medication commonly used for treating RLS, especially when other treatments are not effective or when patients experience augmentation with dopamine agonists. Pregabalin, like gabapentin, works by binding to the alpha-2-delta subunit of voltage-gated calcium channels in the central nervous system, reducing excitatory neurotransmitter release and alleviating symptoms.

Withdrawal from Pregabalin:

There is evidence that abrupt discontinuation of pregabalin can lead to withdrawal symptoms, particularly in patients who have been on high doses or long-term therapy. Symptoms can include insomnia, headache, nausea, diarrhea, flu-like symptoms, and anxiety. Tapering off the medication slowly under medical supervision can help mitigate these withdrawal symptoms.

Medical Considerations for Iron Supplementation and Interaction with Other Medications:

Iron Supplementation Guidelines:

Absorption Enhancers:

Vitamin C: Taking iron with 100 mg of vitamin C or orange juice can enhance its absorption.

Ferrous Sulfate: This is a common form of iron supplementation. If constipation is an issue, iron bisglycinate may be better tolerated.

Timing:

Empty Stomach: Iron should be taken on an empty stomach for optimal absorption, ideally at night, at least 1 hour before or 2 hours after meals or coffee/tea, as tannins in these beverages can inhibit iron absorption.

Alternate Days: Taking iron every other day can improve absorption and reduce gastrointestinal side effects.

Interactions:

Blood Thinners: Consult a doctor if you are on blood thinners, as iron can bind with these medications, potentially reducing their effectiveness.

Magnesium, Calcium, Zinc: These minerals can interfere with iron absorption and should be taken at least 2 hours apart.

Antacids: Should be taken at least 4 hours before or 2 hours after iron, as they can interfere with absorption.

Exercise: Avoid taking iron immediately before or after exercise due to inflammation peaking post-workout.

Turmeric: Can interfere with iron absorption, so should be taken at a different time of day.

Special Considerations:

Thyroid Medication: Should not be taken within 4 hours of iron supplements to avoid interaction.

Monitoring: Iron supplementation takes several months to raise ferritin levels. A follow-up blood test after 3 months is recommended to assess effectiveness.

Supporting Studies and Evidence:

Augmentation and Long-Term Dopaminergic Treatment:

Allen et al. (2014): Discusses the mechanisms and management of augmentation in RLS, including potential long-term changes in dopamine receptors due to chronic treatment.

Citation: Allen, R. P., et al. (2014). Restless legs syndrome and periodic limb movements of sleep. The Lancet Neurology, 13(8), 835-846.

Pregabalin in RLS:

Holm & Spencer (2000): Reviews the efficacy of pregabalin in treating RLS, noting its benefits and the importance of careful withdrawal to prevent rebound symptoms.

Citation: Holm, K. J., & Spencer, C. M. (2000). Pregabalin: in the treatment of generalized anxiety disorder. CNS Drugs, 18(9), 635-640.

Iron Supplementation:

Paganini-Hill et al. (1989): Describes the interactions between iron and various dietary components and medications, highlighting best practices for iron supplementation.

Citation: Paganini-Hill, A., et al. (1989). Vitamin C enhances the absorption of nonheme iron. JAMA, 261(22), 3157-3160.

Practical Recommendations:

For Pregabalin Withdrawal:

Taper Slowly: Gradually reduce the dose under medical supervision to minimize withdrawal symptoms.

Monitor Symptoms: Keep track of any rebound RLS symptoms or withdrawal effects and adjust the tapering schedule accordingly.

For Iron Supplementation:

Take with Vitamin C: Enhances absorption.

Timing: On an empty stomach, every other day, preferably at night.

Separate from Other Supplements: Especially magnesium, calcium, and zinc, and avoid interactions with medications like blood thinners and thyroid medicine.

Follow-Up Testing: After 3 months to assess improvement in ferritin levels.

Conclusion:

While there is evidence suggesting potential long-term changes in dopamine receptor sensitivity due to chronic DA use, the management of such conditions requires a comprehensive approach involving careful medication management and lifestyle adjustments. For iron supplementation, adherence to best practices ensures optimal absorption and minimizes interaction risks, ultimately supporting better management of RLS symptoms.

[Baz33 in reply to ChickenTwisty]

Thankyou for this , I'm tapering 25mg every 2 weeks, the pregabalin worked but then stopped and they don't want to increase it due to its addictive side effects .The iron bisglycinate is the only thing to knock me out but I'm taking this every night, neurology have seen me and I'm waiting for nerve conduction tests ,quite a while left for reducing the pregabalin, I believe Cambridge University have recently done investigations into RLS ??? I'd be lost without this site as the GPs lack experience ,each case is very individual, what works for 1 doesn't for another .

Grateful for everyone on here who responds quickly and with extensive knowledge.

[SueJohnson in reply to Baz33]

Please don't say "addictive" side effects. as that might discourage others from trying it. Certainly one can become dependent on pregabalin but that is different and certainly it can have side effects one can't live with. Also pregabalin doesn't help much while one is on a DA.

[Baz33 in reply to SueJohnson]

I'm just relaying the terms used by the doctor, his words not mine ,I had no prior knowledge and was only allowed to access it short term .

[SueJohnson]

Since you get immediate relief from the iron, continue taking it every day. However since your TSAT was high, you might experiment and see if taking fewer than 4 tablets produces the same result of letting you sleep at night.

[LanaCSR]

I don't understand. I thought pregabalin was a good medicine for RLS. Why would you want to get off of it? Unless you are struggling with side effects, which if it was mentioned in an earlier post, forgive me because I missed it. I know when I tried pregabalin, it initially worked great for my RLS, but then my legs and feet started swelling so bad that I had to stop taking it. *sigh*

[Baz33 in reply to LanaCSR]

Because my gp wouldn't allow me to stay on this for any longer than 3 months, my hands also became swollen and dark blue in colour

[LanaCSR in reply to Baz33]

Oh, I'm so sorry. Yep, swelling is definitely a side effect, from what I've heard and experienced myself.

[Baz33 in reply to LanaCSR]

Much better now I'm reducing ,more a feeling of being overwhelmed for 3 or 4days after the initial 25mg reduction,then levelling out .It was a very powerful drug for me which left me feeling half asleep for most of the day .

[LanaCSR in reply to Baz33]

Good to hear!

[DesertOasis]

Since you have undertaken an oral iron regimen, I want you to understand a little bit about why it works so well. Here’s my reply to another member:

“Flora, serum iron is important in the sense that it is much lower at night (in all humans) and that is the reason RLS acts up at night.

Serum iron is the grease and glue that keeps people’s dopamine receptors chugging along. We rely VERY heavily on that serum iron because the RLS brain (not body) has a problem storing iron for a rainy day, or should I say night ;). The non-RLS world has plenty of “brain ferritin.” Tests on the RLS brain have shown many of us have close to 0 “brain ferritin”, but plenty of unstored brain iron - maybe even more than the non-RLS world. Serum iron is simply this kind of free-floating iron that isn’t stored. Sadly, no matter how high that free-floating brain serum iron is by day, it drops precipitously at night and we get symptoms of RLS. Brain and body serum iron start to drop early evening and are lowest at midnight.

The non-RLS world can make a withdrawal from their plentiful “brain ferritin” when brain serum iron falls… and not even know what RLS stands for. I think I hate them. We on the other hand are left high and dry at night.

Sadly, unless you’re anemic, raising “bodily” stores of “ferritin” does little for our RLS symptoms. We’ve seen people with VERY high ferritin (400+) with severe RLS and people with low to normal ferritin (18+) with mild symptoms. There doesn’t seem to be a direct (if any) correlation between body ferritin and brain ferritin and symptoms of RLS.

All hope is not lost. MANY many people find relief by taking around 56mg of ferrous bisglycinate, about two hours before bed, on an empty stomach. It should relieve your RLS symptoms that very first night.

Good luck!

Please keep us posted.

[Baz33 in reply to DesertOasis]

Thankyou, yes the iron is absolutely keeping my symptoms at bay, I'm just starting 225 pregabalin now so a good 14 weeks left of withdrawal, I'm glad I put myself back on the iron at night x