Steroids: Does anyone know if taking... - Restless Legs Syn...

Restless Legs Syndrome

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Steroids

Joolsg profile image
26 Replies

Does anyone know if taking steroids will make RLS worse? I am having an MS attack at the moment of optic neuritis & my MS nurse wants me to see my GP asap to get steroids. I said I would not take them if they made my RLS worse but she had no idea whether that would be the case.

I have tried researching it via Dr Google but have not found any reliable information.

If any of you lovely people have tried steroids could you please let me know if it made your RLS worse.

Many thanks,

Jools

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Joolsg profile image
Joolsg
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26 Replies
Joolsg profile image
Joolsg

Further to my post above, I've just read my RLS bible by Dr Buchfuhrer, Lee et al, & it mentions using steroids instead of anti histamines for allergies.

I'd still like to hear first hand evidence from anyone who has tried them.

Thanks,

Jools

Pippins2 profile image
Pippins2

Hi, I have taken oral steroids (and injections ) without any problems Jools but guessing would maybe be lower doses to those necessary for MS symptoms. I am sorry that you are having a flair. Get well soon xx

Joolsg profile image
Joolsg in reply to Pippins2

Thanks so much Pippins. I’ll need 500mg a day for 5 days but my GP surgery are being useless. MS nurse has sent them email saying to give me steroid prescription but first check for urine infection ( apparently steroids can make them worse) but GP secretary won’t put me through to GP or give me sample pot. God why are GP secretaries such little Hitlers!

If no joy tomorrow I’ll call hospital again and they can phone my GP.

Hopefully it’ll pass soon and I’ll get my sight back ASAP.

Thanks for the kind thoughts

Jools

Pippins2 profile image
Pippins2 in reply to Joolsg

A much higher dose, think mine was only 10mg. Funnily enough I had an email from my friendthe other day who also has MS and recently had optic neuritis. She has RLS (I met her on here actually ) and she didn't mention that the steroids worsened her RLS and knowing I have RLS I am sure she would have mentioned it, Hope you get it all sorted soon xx

Joolsg profile image
Joolsg in reply to Pippins2

That’s encouraging. Thanks Pipps.

nightdancer profile image
nightdancer

There is zero evidence that steroids will make RLS worse. My personal story with that is every time they had put me on Prednisone, I had NO RLS. Too bad we cannot take them all the time, because at the time, my RLS was not under control, and the prednisone made a huge difference, as in NO symptoms the dozen or so times I have had to take them.

Joolsg profile image
Joolsg in reply to nightdancer

Thanks so much for that’s info nightdancer. It puts my mind at rest.

RLS2020 profile image
RLS2020 in reply to nightdancer

I have gotten many steroid shot for back, neck, shoulders etc. I’ve always wondered if it would help get it for my legs if there was such a thing. But I could not find any research

Madlegs1 profile image
Madlegs1

Good luck, Jools.😎

Joolsg profile image
Joolsg

Thanks Madlegs.lol the emoji even has my eye patch!

Can't help here, but just wanted to say I hope it passes quickly and you get better soon😁🌷

Joolsg profile image
Joolsg in reply to

Thanks so much Jess.

How are you doing, Jools?

Joolsg profile image
Joolsg

I’m not so bad thanks Jess. Had a fitful night with the RLS - probably stress.

I’m lucky I’m retired ( due to the MS) so I’m just going to stay warm, drink herbal tea and rest.

My eye doesn’t seem to be getting worse so that’s a good sign. I’m seeing optician later so he will be more useful than my GP. I’m hoping to avoid the steroids as the high dose they give makes you bounce off the walls!

Hope you had a good night,

Take care

Jools

Jumpey profile image
Jumpey

I have no personal experience of this Joolsg but wanted to say that my heart goes out to you having to cope with both conditions. I would suggest if you are unsure to email Dr.Buchfuhrer.He always replies promptly in my experience. His email is somno@verizon.net xxxx

Joolsg profile image
Joolsg in reply to Jumpey

Good idea Jumpey. He’s always replied quickly to me too. I just didn’t think to contact him this time round. Doh!

Joolsg profile image
Joolsg

UPDATE

Thanks everyone for your good wishes. My optic neuritis is easing off so I have decided not to take the steroids as they keep me awake all night with hyperactivity on such high doses.

I'm just resting and drinking lots of water. Not much else to do in this horrible rain anyway.

Hope everyone is managing to keep the legs still long enough to get a good night's sleep.

thewanderer profile image
thewanderer

I have the same experience as nightdancer. I have to take prednisolone (anal suppository) regularly to control ulcerative colitis and find that at higher doses ( >20mg) it can often ( but not always) provide complete relief from RLS. I usually have 50 days treatment twice a year of which around 20 days I have reduced RLS so a small holiday for me twice a year! This effect doesn't seem to be widely known in the medical profession but i'm afraid due to the other impacts of steroids cannot be recommended as a treatment for RLS.

Joolsg profile image
Joolsg in reply to thewanderer

Thanks for the info. It’s useful to know. I know I wouldn’t get much sleep on 500mg of steroids but seems that it helps at very low doses.

Jools

RLS2020 profile image
RLS2020 in reply to Joolsg

Hookah what does it help with?

RLS2020 profile image
RLS2020 in reply to RLS2020

*Jools

Joolsg profile image
Joolsg in reply to RLS2020

This is a very old thread. Oral steroids at high dose help to dampen down the immune system. In MS the immune system attacks myelin, which is a protective layer around nerves in the brain and spinal cord. Steroids can therefore shorten the length of an attack and make it slightly less severe.

Restlesssinger profile image
Restlesssinger

So weird that this old thread popped up in my Google search for, "does prednisone help RLS." I just finished a very short course (6 days) of prednisone because of bronchitis (I have asthma and COPD---and no, I don't smoke). The RLS is really acting up tonight, and this makes so much sense. In spite of doing a taper (20-40-40-20-10-10 mg), I'm suffering now. I just took 400 mg of magnesium glycinate, 25 mg. of iron biscyglinate, and will go up 2-1/2 mg. on the hydrocodone tonight.

When it comes to RLS, if it's not one thing, it's another.

intermk profile image
intermk in reply to Restlesssinger

I have taken a maximum dose of magnesium glycinate for months without any benefit. It's hard to find so I usually use mag oxide which also is of no benefit. Hydrocodone works well as do other narcotic pain meds. Unfortunately I can't get them. I have also found significant benefit from steroids including the anabolic type. But steroids are problematic with long term use so docs will rarely give them to you for more than a few days. And it's my experience that docs won't give a Rx of any type steroids for RLS.

souledoutnicole profile image
souledoutnicole

As someone whos been diagnosed with MS for about 4 years now, ive been told that with my infusion of steroids that it could cause rls, since i dont have rls, everytime during or after my injection the rls starts

Joolsg profile image
Joolsg in reply to souledoutnicole

Thanks- I think it’s the high dose they give for MS relapses that triggers it. Luckily I only had one course of steroids- never again!

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