advice on anti inflammatory? - Restless Legs Syn...

Restless Legs Syndrome

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advice on anti inflammatory?

Rubynessie profile image
14 Replies

My Rl is nearly under control with gabapentin now , I have an appointment with the arthritis clinic and I’m hoping to start some kind of anti inflammatory medication.

Osteoarthritis in most joints and in lots of pain .

Can you advise which ones are safe to take and will not aggravate rl ?

The prospect of starting any new drug gives me the fear , especially when it’s taken many years to come off dopamine drugs and finally feel under control .

Is it normal to have low mood when stopping pramipexole?

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Rubynessie profile image
Rubynessie
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14 Replies
Joolsg profile image
Joolsg

Yes. Dopamine agonists flood your brain with Dopamine, the feelgood hormone. When you stop taking it, you will feel down/depressed for some time.For most of us, it does settle and our mood stabilises. For a small proportion, DAWS occurs and they feel down/depressed for months/years.

Safe mood stabilisers are trazodone and Bupropion, so do discuss with your GP.

Most anti inflammatories used for arthritis should be RLS safe, but do post the name on here and someone will have some experience. Have you tried medical cannabis? It is excellent for arthritis.

Rubynessie profile image
Rubynessie in reply toJoolsg

Good morning

Thank you for reply

Medical cannabis here in the uk can only be subscribed by specialist Doctor and the chance of it being approved is very , very slight

They just want to fill you full of pharmaceutical addictive pills .

The side effects of gabapentin are getting unbearable

Headaches, mood swings, swollen legs , feeling of fatigue and just generally not feeling myself . I feel depressed.

I need the doctor to prescribe a low dose opioid

Can you help please? Is it oxycodone ?

Uk Doctors are very reluctant to prescribe and I’m on the neurologist waiting list , which is longer than a year .

I do not want to increase gaba any further as side effects are unbearable.

Joolsg profile image
Joolsg in reply toRubynessie

Rubyness this is a UK website and most members are in the UK.I am on medical cannabis here in the UK. It is prescribed privately by cannabis clinics. Arthritis will qualify you for medical cannabis. I know at least 3 pe who take it for pain caused by fibromyalgia. It's expensive though. £50 for intitial zoom consultation and then around £3 a day. Try Lyphe or Sapphire Clinic.

Before you consider opioids, does the gabapentin stop the RLS? If so, you could try a switch to pregabalin. It's in the same class of drug as gabapentin, but the side effects can be different for some patients.

First line treatment for RLS is now iron. Either pills or an iron infusion. One day, infusions will be given routinely, before meds are prescribed.

Opioids are prescribed in the UK for RLS if your GP is knowledgeable (highly unlikely as RLS isn't taught) or willing to be educated and to learn the basics of RLS. The younger GPs are more likely to listen than the older ones, who often take offence at patients researching or knowing about their disease.

The best opioids for RLS are methadone or Buprenorphine as they have a long half life of 24/25 hours. However, GPs are unfamiliar with low dose opioid therapy and Buprenorphine is red listed in many prescribing areas. That means GPs cannot prescribe it. Only a neurologist or sleep specialist.

Targinact ( Oxycontin and naloxone for constipation) is licensed for RLS, and your GP can prescribe that. The only problem is that Oxycontin/Targinact do not work for many of us. That's because Oxycontin doesn't last for 12 hours. We then experience mini opioid withdrawals, and the main symptom of opioid withdrawals is increased RLS. But there are many for whom it works well.

I suggest you ask for a 20min face to face with your GP, show him/her links to the Mayo Clinic Algorithm, Massachussetts General Hospital Opioid study, the NICE study on Targinact and the RLS UK website and ask:

1. Full iron panel fasting, morning blood tests. Raise serum ferritin above 200ųg/L.

2. A trial of 0.4mg Buprenorphine.

3. If Buprenorphine is red listed, or HP refuses, a trial of 20mg Targinact and take 5mg pills every 6 hours.

Opioids can cause anxiety, depression and sweats and constipation.

mayoclinicproceedings.org/a...

researchgate.net/publicatio...

rls-uk.org/medical-treatments

massgeneral.org/rls-registry

nice.org.uk/advice/esnm67/c...

For your low mood and depression caused by stopping dopamine agonists, the only safe mood stabilisers are trazodone and Bupropion.

If you are prescribed an opioid, do NOT suddenly stop gabapentin, as that can cause withdrawal symptoms. Reduce slowly by 100mg a week.

Rubynessie profile image
Rubynessie in reply toJoolsg

Thanks again

Do you take medical cannabis for RL ?

I’ve looked at Sapphire Clinic in the past

If medical cannabis helped both RL and Arthritis I’d be more than willing to pay the price . It would most definitely be worth it .

I know that smoking cannabis in the past worked wonders for RL .

Joolsg profile image
Joolsg in reply toRubynessie

It definitely sends me into a deep sleep for 3 or 4 hours. When I was going through withdrawal from Ropinirole, it really helped.

I don't need it for RLS anymore as mine is 0/40 on low dose Buprenorphine.

SueJohnson profile image
SueJohnson in reply toRubynessie

I know I have told you this before but If you decide to come off gabapentin you need to do so very slowly to avoid withdrawal effects. Reduce by100 - 200 mg every 2 weeks. If you do so you will have no withdrawal effects.

Eryl profile image
Eryl

The first thing to do about inflammation is to remove the causes then you can address vitamin deficiencies and add foods that fight oxidative stress and inflammation. Inflammation is part of the natural healing process so you don't want to stop it artificially.

Rubynessie profile image
Rubynessie in reply toEryl

Thank you Eryl

Mainly it’s osteoarthritis that’s causing it . In all of my joints now , the pain is bearable through yoga and swimming and cold water exposure helps too .

I feel that gabapentin is increasing my swelling.

Eryl profile image
Eryl in reply toRubynessie

Osteo arthritis is not caused by a virus or bacterium but by the food that you're eating. health.clevelandclinic.org/...

Rubynessie profile image
Rubynessie in reply toEryl

Is it not hereditary?

Glad I use extra virgin olive oil , if any and have a very strict anti inflammatory diet .

Still have osteoarthritis which my parents and siblings have . My symptoms are better because of the lifestyle choices I make .

Eryl profile image
Eryl in reply toRubynessie

No, the only thing that's heriditary is eating habits. Other causes of inflammation are processed foods full of refined carbohydrates.

SueJohnson profile image
SueJohnson in reply toEryl

Experts estimate that around 40–70% of OA cases have a genetic component, with a stronger link for the hip, hand and spine.

Patriciamattozzi profile image
Patriciamattozzi

I had serious inflammation. Constant excruciating pain. I made a dramatic change in diet. No dairy, no gluten and absolutely NO sugar. 29 days later and I am pain free after years of suffering. The diet change is so great and doable. NO sugar- NO pain. Most of my previous diet had been “inflammatory.” Food makes a difference in our health.

Nanpat profile image
Nanpat

Hi, I use Mobic for osteoarthritis. Rheumatologist says it’s the best, I’m careful to take half or full one every second day only. Works well

Found in past repetitive use caused small ulcers to start, so now take somac as a preventative

Good luck

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