Should I stay with Sapphire Clinic

[Jezee]

I recently been accepted by Sapphire Clinics, but after reading many negative reviews especially on trustpilot I don't know if I want to use them. Their pricing is all over the place for example I've been quoted different consultation fees of £50 over the phone and then when I have gone online to book at a later date a fee of £210. I just feel they are in this for the money and not to help the me. I don't even know how much the THC oil will cost me. Should I try someone else? I getting desperate as the hospital have been really poor and Kratom doesn't help me anymore.

[Joolsg]

I have used both Sapphire and Lyphe.Sapphire charged me £50 for initial consultation and £50 for review follow up 4 weeks later. Then you have to pay £50 for each follow up review, every 3 months.

The cannabis oil with THC is listed on their websites and I paid the price listed.

I think most of the cannabis clinics are in it for the money, rather than to 'help' patients. But, I did find Sapphire were fast.

I complained about the delivery company, DPD, as they left the cannabis on my doorstep without ringing the bell. Luckily I was in.

As you are aware, kratom is illegal in the UK (since 2017). It does lose effectiveness and people develop tolerance to it and have to increase the dose. Some people rotate different strains to prevent this.

Kratom mimics opioids, so if kratom has stopped your RLS, I suspect cannabis won't help.

I have used kratom in the past and it stopped all RLS. Cannabis does not stop my RLS, but it does knock me out and sends me into a deep sleep for about 3 hours. Then RLS wakes me up.

I stopped using cannabis in March '22 after Covid left me with several ongoing problems, including Sjogrens ( dry mouth, little saliva). Cannabis exacerbates that.

So, if I were you, I would try different strains of kratom before spending a lot of money on cannabis.

If you go ahead, Sapphire will charge £50 for your zoom appointment and the prices for cannabis oil will be on their website and clearly set out during the consultation. But, cannabis may not stop your RLS.

You may have to revert to using the NHS and try to get blood tests, iron infusions etc and if raising serum ferritin above 100/200 doesn't help, start down the meds route.

[Jezee in reply to Joolsg]

Hi Joolsg ,thanks for replying. The woman who rang me from Sapphire said that it was £50 for the consultation but for some reason when I have gone to book online with a doctor it is showing me a cost of £210.

I've been using Kratom for 8 years and I purchase it from 2 places in the US and 1 from Sweden. The vendor that I have used the longest is the one that is working the least. I don't take anymore than I did when I first started. The other 2 work sometimes and not others. I rotate strains and vendors but it seems that my body is getting used to kratom. The last 2 weeks I have even reduced kratom but that's when my legs are really bad. I'm feeling really tired, run down and low. Not sure what else to do with kratom. I think you might be right that if kratom doesn't work then THC might not work and it's a lot of money to try. The Freeman in Newcastle have been really poor, and the Doctor (Kirsty) was so rude I have asked for a different doctor but am still waiting to hear back. That was 3 months ago. I have severe restless legs and not sure what to do. My wife is going to ring the doctors on Monday and see what they can do. If I keep going I'll lose my job as I just can't cope with tiredness anymore. I hate to feel really low as I start having thoughts that I just don't want to have. It also affects my wife, I feel pretty useless as a partner.

[Joolsg in reply to Jezee]

I have heard several bad reviews of Kirsty Anderson, so you're not alone.There is another doctor there with better reviews-Dr Clare Bolton.

What meds do you take apart from kratom?

I came off Ropinirole in 2016. I had an iron infusion in 2019. I was on 25mg of Oxycontin and 150mg pregabalin but still had severe RLS.

I'm now on 0.4mg Buprenorphine and have zero RLS.

As kratom worked for you, it's highly likely Buprenorphine or methadone will work well. If you can find a UK doctor who will prescribe it for you. London seems fine, but several areas 'red list' Buprenorphine, so only a specialist can prescribe.

[Jezee]

I don't take any meds, Kirsty put on me on Pragablin via the doctor but only 100mg which didn't do anything but made me feel terrible, migraines, sickness, etc. I asked the doctor to prescribe me more but after a week we had to go back through the hospital. I contacted the hospital and explained I didn't want to deal with Kirsty and wanted another Neuroligist and there said they would sort something out. That was over 3 months ago. Even though my Iron levels are over 600 which Kirsty said was high. She said it wouldn't hurt to have an IV which I got in Feb I think. It never worked and to this day she has never asked if it helped. The only thing that workd for me for 10 years was Ropinerole but it stopped working almost over night. Since then I've had most other meds but nothing has worked. I need to see if I can try Buprenorphine or methadone. Do you think Dr Clare Bolton would prescribe either of these? Thanks

[Joolsg in reply to Jezee]

It's certainly a possibility. As you failed Ropinirole and iron infusions, your RLS is now refractory.She may want you to try higher doses of pregabalin first. The side effects you describe usually settle after 2 months and the average dose is between 150 -200mg, with a max dose of 450mg.

But you can certainly ask to be put straight on Buprenorphine.

Have a look at the RLSUK website and the Mayo Clinic Algorithm and have copies ready to show to Dr Clare Bolton.

Many of us on here are doing brilliantly on Buprenorphine after everything else has failed. Buprenorphine has a long half life so covers RLS 24/7 for the vast majority.

[Edengirl58 in reply to Jezee]

I saw Clare Bolton - first time of seeing a neurologist- at Freeman last November. She was lovely, and immediately suggested an iron infusion and Gabapentin, which have helped. However she also said that if needs be, down the line, the dopamine agonists were effective and urged me not to be concerned about the side effects😫

Luckily the iron infusion raised my ferritin to over 200, which has helped, together with 500mg Gabapentin. At review in March I saw Michael somebody, who was a locum. Due to be reviewed again in October at which point, if I’m stable he said they would discharge me. I intend asking for iron panels periodically from my GP going forward.