Weird 6 day Miracale

[Shumbah]

The weirdest thing one of my peeps .

Multiple failed back surgeries spondylitis ,sciatica , severe RLS ,Menenigioma {brain cancer remisssion }

She is drenched in sweat Hormone replacement ceased due to cancer

RLS 24/7 Horrific Pain score 10 vomits daily from the pain ,can no longer eat lives on sustagen.

takes 4mg Zofram 4 hourly

Had to give up her nursing career , cant shop drive etc ...

Now the weird bit last week she was put on 15mcg Bup patch /2 week course of celebrex [still 6 days to go ]and 6 days on Predisone 3 at 50 mg 3 at 25 mg

Miracle she was back , she drove the care did the shopping no sweating NO RLS No pain and slept like a baby.

She said it was like there was nothing at all wrong with her , prendisone ended and she is back in hell.

Any ideas ?

How do i share this with RLS -LEARNER ?

Thanks

[SueJohnson]

Prednisone lowers inflammation which we know makes RLS worse so my guess is for some reason she had a lot of inflammation.

[Shumbah in reply to SueJohnson]

It’s seems it prednisone was gold for her and I just don’t get it .

Nice to hear from you 😘

[rmbroadh in reply to Shumbah]

I have COPD and take quite a bit of prednisone on and off. Also have Dexamethasone infusions for exacerbations. During all of the prednisone and infusions, RLS disappears. I do believe it is caused by inflammation. RLS returns especially with leg aches a few days after finishing the regimen. I have asked my neurologist about this and he said he has never heard of prednisone helping rls.

I'm also taking .75 ropinirol but I noticed the prednisone connection before I started it.

[Shumbah in reply to rmbroadh]

Thank you 🙏 thank you 🙏 thank you 🙏

Are you able to get a maintenance does of Prednisone ?

[rmbroadh in reply to Shumbah]

Yes, my pulmonologist is pretty lenient with me at this point. 'Quality of life" and all. I get 90 day supplies but I'm very careful and take only as needed.

[rmbroadh in reply to rmbroadh]

I'll add that my pulmonologist has said if you go on daily maintenance, take 10mg every other day.

[Shumbah in reply to rmbroadh]

I thought I would mention this I stumbled on . I have chronically inflamed lungs so I have been on testosterone for 25 years and that has held me until shingles and of so much more inflammation. Nightly asthma , my new magic trick is Perilla Oil capsules 3 caps 2 daily with meals . It’s and Asian oil I learnt about dpfrom Dr Gundry it’s natural and for COPD , asthma any thought what have I got to lose with about 4 days no more night asthma , the I stopped it for surgery within 3 days it was back. I spoke to surgeon he looked into and he said he would rather I stay on it . So now I have on the verge of Sepsis so confused forgot a lot of my med s for a week of course a massive asthma attack all the chesty stuff coming up. So I’m hopefully in 2 days it will have the I inflammation in my lungs back under control again.

I did a Visio today for the RLS stories page on Instagram I hope to put it up tomorrow

[rmbroadh in reply to Shumbah]

Thanks Shumbah.I'll check out the oil. No side effects from it that you've noticed? Always my biggest concern and interaction with my other meds.

[Shumbah in reply to SueJohnson]

She does multiple failed back surgeries . , I will get her there . I won’t stop trying

[RLSLearner]

Hi Shumbah,

Great result. Interesting that sweating is often a side effector opiates, esp Methadone. Keep hearing good things with But.

[Shumbah in reply to RLSLearner]

She has had the sweating since they removed her estodot for the brain cancer . How did the prednisone stop the RLS , stop the pain stop the sweating and let her sleep through the for 6 days

Then prednisone course ceased day 6 day 7 back to hell it’s like a cruel game of snakes and ladders .

It has me baffled any other take on how you prendisone do that . Her words were I was normal for 6 days .

I’m the opposite on it don’t sleep get cranky bla bla

I most certainly hope you are kicking goals with your plans I am honestly excited if it comes off.

[Hidden in reply to Shumbah]

Is there anyone as in a RLS expert

that you know you could put it to. Someone must have the answer . How absolutely horrible to find a med that made everything for her back ti normal then taken away. that is too cruel.

[Shumbah in reply to Hidden]

instagram.com/rls_stories?i...

Not RLS experts about I am really hoping my new instagram stories will help

I tag 5 million neurologists every post and 8 million doctors .

Please support and share I need everyone on board it’s hard being a solo worrier

1.10 am and I’m still at it.

I have emailed a few doctors nothing if interest back yet .

She us trying to get a cancellation with GP tomorrow, which is far better than what she was going to do when I rang her today. She hanging by a thread .

Thank you for your reply 🪷

[RLSLearner]

Prednisolone is not something you generally want to continue long term, 6 days is fine. 50mg is a decent dose. With longer courses tapering down slowly is the path, sometimes 25mg x 5 days, 20mg x 5 days... My father-in-law was stopped suddenly from 10mg and was literally on deaths door, being palliated. Eventually I suggested just giving him the pred again and the next day he was nearly fine.

RLS as an inflammatory condition is not new but not seen much treating it with antiinflammory meds (diet yes). Maybe treating RSL with similar drugs to rheumatoid arthritis would help?

[Kakally]

Prednisolone is as always a magic steroid (anti inflammatory drug used widely for so many illnesses particularly associated with severe inflammation though not always )

Fantastic for a week or so at high dosage for asthma attacks , flare ups of colitis , arthritis and most ‘-itis’ illnesses…

Necessary as long term for a few people but usually at low dosage

Long term pred has the potential for very damaging side effects .

If an individual’s RLS has a large inflammatory component to it then it doesn’t seem too surprising that you can have a magic but temporary ‘cure’ . The problem is likely to return as soon as the inflammation returns.

Many of us have RLS with little or no obvious inflammation, so are unlikely to benefit from prednisolone , I GUESS ,

I think the inflammation , if fortunately it could be helped with e.g. the monoclonal antibody drugs … then the RLS may well follow suit and remain minimally problematic 🤞🤞🤞,

This is just my thoughts and I have no expertise with most of this ,

I am just like all of us , struggling to survive and deal with the RLS rubbish thrown at us.

I do send my LOVE and very best wishes to her xx🤗

[Shumbah in reply to Kakally]

It’s like which came first , crazy disease the inflammation or the RLS .

I had the RLS as a child and the inflammation started with shingles then the RLS was out of control

[Nanpat]

Can only speak from my experience, prednisolone makes you feel wonderful then when you stop that can happen.

The idea usually is to find a maintenance dose where you reduce the drug till you reach a point where it still settles your symptoms and isn’t too high to cause problems.

In saying that I have been on my maintenance dose for 40yrs and now have rotten bones.

Hope this helps?

[Shumbah in reply to Nanpat]

It does because it backed up my thoughts 🌷

[Hidden in reply to Nanpat]

What is your maintenance dose? My gp has started me on 50mg for 3 days and 25mg for 3 days again......so I'm looking forward to another great week. But I want to discuss with her a maintenance dose......I don't care about the side effects, I just want a life

[Nanpat in reply to Hidden]

I’ve been on 7.5 mg for 40 yrs for Lupus. During bad flare ups many yrs ago highest dose was 25mg, then reducing is slow.

Should have tried to come off over the yrs but dr was against it. As mentioned have osteoporosis now due to long term use.

Just have regular bone density scans, good luck

[Kakally in reply to Hidden]

I’m really wondering if the monoclonal antibody drugs could be a new and much better choice for RLS. This case report is very interesting and it makes good scientific sense. I think it might be difficult to get someone to prescribe them for you.

pubmed.ncbi.nlm.nih.gov/363...

This case report above is helpful for this possibility.

Thinking of you 🤗