Sapphire Clinics

[Jezee]

Just arranged my first consultation with sapphire clinics tomorrow (Thursday) but starting to wonder if I've done the right thing. I've never actually read anywhere that THC /cannabis oil has helped anybody with their restless legs. At £50 for the consultation and £70-£100 for the oil it's money that I can't really waste what should I do? If you've read any of my other posts I've tried most prescription drugs and my fertin level is over 500 so not sure what else to do. Kratom isn't really working for me

[Joolsg]

I used cannabis oil with THC for around a year. It didn't stop my RLS, but it did knock me out for 3 hours from midnight to 3.am. I would then be woken with RLS.So, it does send you into a deep sleep, but won't necessarily stop your RLS.

If you responded to kratom, you will probably be someone who does well on opioids.

[Jezee in reply to Joolsg]

Thank you for getting back to me, do sapphire do THC levels above 20% or is that their maximum? What are you referring to when you say opioids?

[Joolsg in reply to Jezee]

There are several opioids that are effective for RLS.Tramadol (although that can cause drug induced worsening), Targinact ( Oxycontin & naloxone), morphine, codeine or the more effective, long half life methadone and Buprenorphine.

I think Sapphire do supply higher THC than 20%.

[Jezee in reply to Joolsg]

Thanks Joolsg, I have tried tramadol but felt terrible on them. I waiting to be referred to the neurology department at Sunderland but it is taking months. I think I'm going to go ahead with Sapphire clinics tomorrow and hopefully see if they can prescribe me with different amounts and possibly strains (Ive read that Indica can help with RLS) of cannabis oil.

[Joolsg in reply to Jezee]

Just don't let them prescribe dopamine agonists. And ask your GP to arrange full panel, morning, fasting bloods so you can show results to thr neurologist and get an iron infusion if serum ferritin is below recommended RLS levels.

[Rayme]

I use 2tspn cannabis butter (supplied by a friend as it is otherwise too expensive for me) and like Joolsg it can give me restful sleep. The drawback is I need a week off it every 2 months or so as it becomes less effective over time. I like the soothing effect to help my insomnia and that it's not as heavy duty as some drugs, I have no side effects from it. Having said that I'm looking for something to help the RL when having a cannabis break. Dr prescribed pramipexol for a 3-6 mth on/off option but I'm too cautious to try it due to the potential augmentation even on short term dose. So for me it is still only cannabis at the moment. The oil without thc didn't work at all for me, neither did pregabalin or codeine (only awful side effects from those). I hope you find a good solution.

[Jezee in reply to Rayme]

Thank you for your reply, have you tried kratom for the time when you are taking a break? That's what I'm planning to do, take the oil for a while to give the kratom a rest as it loses its effectiveness over time. Hope you get sorted.

[Rayme in reply to Jezee]

I would like to do what you plan to do , swap kratom and cannabis. I will try to get some kratom. I haven't tried it yet but that sounds like a plan that can work for me. I've had RL since a teenager, it's definitely much harder as the body gets older!

[MumofBella]

There is no legal way of obtaining cannabis apart from on prescription from a doctor, probably consultant. If you can’t get a prescription for Sativex, and you won’t as it’s only used for MS patients with spastic pain, don’t bother with anything else. All the others work at best as placebos. I’d say don’t waste money on any pills and potions from clinics, the only proven methods of dealing with RLS are dopamine agonists and opioids. There’s a big downside to both but you either get your head round it or suffer. I’ve had RLS for about 55 years, way before it was generally acknowledged as a separate complaint and I’ve seen every type of doctor you can imagine privately and on the NHS. My constant prop has been Tramadol for almost 20 years and I’ve gone through all the dopamines which eventually stop working. We can only do our best from day to day. Just don’t waste your money - alternative drugs and herbs are just a big con. If they work at all it will be as a placebo.

[SueJohnson in reply to MumofBella]

You are wrong about the only proven method of dealing with RLS are dopamine agonists and opioids. Dopamine Agonists can lead to augmentation and just because you didn't like the way pregabalin made you feel doesn't mean it doesn't work for others. And there is also gabapentin.

And even more important is having one's ferritin tested. Improving ones ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.

And there are others.

[Randfan in reply to SueJohnson]

Technical article but I think the gist of it is there is hope in solving the iron and RLS relationship.

rls.org/file/member-publica...

[MumofBella in reply to SueJohnson]

Oops! I forgot the iron thing, daft as I actually had an infusion - maybe because it didn’t work for me. Augmentation - the big monster and always mentioned in these debates. I acknowledge it exists but it hasn’t happened to me so far and if it’s brought into the conversation before a person even starts using a dopamine drug then there’s no hope! There’s no set period of time for augmentation to start, that’s if it does start, so each one of us has to weigh up months or maybe years of relief against any downside. We’re all different - I was very black and white in what I wrote but I feel that months/years of relief against the possibility of augmentation (not probability) is worth the gamble.

[MoxieLake]

I take marijuana edibles to relieve my rls symptoms and it works great. I have pretty severe symptoms and the edibles work great. I usually get a full night sleep. I would give it a try. Best of luck to you.