Has anyone been on Ozempic ?

[Shumbah]

Is anybody using Ozempic or tried Ozempic and has it had any impact on RLS ?

[SueJohnson]

It should be OK for RLS.

[erinjee]

hey Shumbah, I was on it briefly (2 months I think) because my blood sugar spiked which turned out to be a med reaction but it didn’t bother my RLS at all.

[Shumbah in reply to erinjee]

Thank you 🙂

[Eryl]

The reason for your RLS is the same as the reason for your type 2 diabetes, i.e. the consumption of too much carbohdrate especialy refined carbohydrate. You may like to watch this video: youtu.be/ZCFjIcF6SsI(Not working as expected?)

[Lilcatfeet in reply to Eryl]

I think it’s a little more complicated than that. If it were simply diet all of

[Lilcatfeet in reply to Lilcatfeet]

us would be cured! Still so much to learn about this strange and cruel condition.

[Eryl in reply to Lilcatfeet]

youtu.be/xZ7GSskFv0M(Not working as expected?)

[lollydog35]

I have been on ozempic for nearly a year and can’t say that it made RLS any worse. I am type 2 and was given it to help with blood sugar. In 9 out of ten cases it also aids weight loss. I am afraid I am number 10. My d iabetes nurse says that the weight will come off only when I sort out my insomnia…….oh that it were that easy. RLS is driving me insane.

[Shumbah in reply to lollydog35]

My heart breaks for you , RLS is a vile cruel disease and I would have been euthanised in 2019 if I had not been blessed to be prescribed buprenorphine. My heart breaks for people who cannot take it .

Thanks for your reply

[Shumbah]

Thank you very much , I have sent it to my sister .she is looking at this and metformin which people doesn’t release actually causes neuropathy, people think it’s often there diabetes however it coukd be the metformin.

I am terrified of anything I don’t have to take.

My dad is on Ozempic for diabetes been brilliant for him however he is 85 and does not have RLS and taking it forever is not a problem at his age.

My other sister had weight loss surgery , I heard recently weight loss surgery can cause RLS too, I hope not she is however having other issues I feel may be linked to the lack of absorption of good fats etc.

Thanks again absolutely brilliant information much appreciated

[UpsideDownInsideOut]

I don’t know anyone who’s been prescribed it personally but I’ve heard it discussed a lot lately.

Apparently it’s really good for helping people lose weight but it can leave them looking really haggard as the weight loss can be quite drastic.

I haven’t heard it mentioned in relation to RLS though

I hope your sister has a good experience with it. I’m interested in learning more about it myself but I too am terrified of taking anything that could possibly cause my RLS to worsen.

Good luck if it was for you and not your sister Shumbah. I’ve had a particularly bad night and I’m exhausted. Sleep deprived and brain like a sieve… 🙃

[SueJohnson in reply to UpsideDownInsideOut]

Are you taking any medicine for your RLS?

[UpsideDownInsideOut in reply to SueJohnson]

I take 450mg pregablin and 2 iron pills every second day with a glass of orange juice. I was on antidepressants until a few years ago but I came off of them as I think the ones I were taking were problematic with rls.

[SueJohnson in reply to UpsideDownInsideOut]

Since you said you had a bad night, I assume your RLS is not under control with 450 mg of pregabalin. Did it ever control your RLS? Have you had your ferritin checked? Is that why you are taking iron? You are right about the antidepressants. The only safe ones for RLS are trazodone and wellbutrin (zyban).

[UpsideDownInsideOut in reply to SueJohnson]

I haven’t had my ferritin checked for a while but I’m having it checked again this coming Wednesday. The first time it was checked it was 14 and the last time it was checked about a year ago it was 74 so it had increased but it took a long time to get from 14 to 74.

I was originally on pregblin 300 at night and 300 in the morning. I wasn’t having any day time rls so I asked the Gp if I could stop taking it in the day.

She was against this, I got the impression she thought I was being arrogant or unreasonable as though I was questioning her medical knowledge but I was insistent that I wanted to only take it at night unless I started getting symptoms earlier in the day.

About 6 months ago she added 150 pregblin to my night time dose which has me now taking 450 pregblin at night.

Sorry if that doesn’t make sense. I’m really exhausted and I have a chest infection too at the moment. I just feel wiped out.

[SueJohnson in reply to UpsideDownInsideOut]

Be sure when you have your test form ferritin you stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. Yes it can take a long time to raise it as you discovered. You can take the iron tablets every day at the same time so it is at least 24 hours apart, 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 or calcium take them at least 2 hours apart since they interfere with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take you iron at night. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If you take thyroid medicine don't take it within 4 hours. Ask for a new blood test after 3 months.

You didn't say whether the 450 mg controls your symptoms. If it doesn't, you can raise it by 25 mg every couple of days until it does, but no more than 600 mg. If that doesn't work then you would need to come off it very slowly to avoid withdrawal effects. If you do it slowly enough you won't have any. Then you would need to go on opioids, preferably buprenorphine.

[UpsideDownInsideOut in reply to SueJohnson]

Sue THANK YOU so much for all of that information. I’ve copied so I can read it again and again until my brain absorbs it.

450 isn’t controlling it and my blood test is booked for 1.10pm.

I’ll make sure I fast after midnight and stop all iron. I’ll phone up tomorrow and request a morning blood test.

Once again, thanks Sue. Thanks a lot.

[TeddiJ in reply to UpsideDownInsideOut]

UpsideDown: have you considered Kratom as a backup for those bad nights? It would so improve your sleep and mental health. It is not perfect, of course, but I do hate to hear of people suffering so much. You could order a red strain from kraatje.eu or kratom.org-I think I have those right. If not, do ck my recent posts. Best of luck!

[UpsideDownInsideOut in reply to TeddiJ]

Thanks Teddi. I’ll give it a try.

[TeddiJ in reply to UpsideDownInsideOut]

It absolutely works-just try not to overdo it and keep looking for long term solutions. Let me know-would love to hear how it's going.

[CORFUORBUST]

I have taken for years on and off for diabetes ty2 and weight loss. It has no impact on my RLS or PLMD.

[Shumbah]

thank you for your reply

[funkyday]

I am on it and when I started at the .25 level it definitely exacerbated my rls but I found that after about 2 weeks it calmed down and went away. I am very sensitive to medications so I was concerned I'd have to go off the Ozempic, but like I said, it's all good now.

[sue32]

I was on it, not for RLS but diabetes. I can honestly say it was a load of c**p! Really bad nausea, and eggy burps and eggy farts. Didn't lose any weight and I wasn't able to reduce my insulin. So now I just watch my carb intake and take Lantus, Metformin and Empagliflozin......

[BocaMom]

I tried Ozempic, briefly, twice in the last 2 years. Could not tolerate it because it drops my blood sugar too low. I was taking it solely for weight loss. It did not seem to affect my RLS one way or another but one thing it did cause was apathy/fatigue. There's a very good Ozempic group on Reddit that I would peruse. Some users/docs are convinced it has an action on dopamine pathway which is why some users lose their cravings for alcohol, etc.

I happened to start O before the breuhaha came to light about the shortage for diabetics. My dad was a type 1 diabetic, so I'd never do anything to jeopardize a diabetic's access to medication (though O is not used for type 1, but still).

As an aside, my sister lost 50-60 lbs on it and improved pretty much all her markers (blood sugar, cholesterol, CRP, etc.). She also feels super energetic on it (opposite of me). But she also has blood sugar problems.

[Shumbah]

thank you for your detailed reply

Much appreciated