Experiences with

Opioid substitution treatment

Wonderful news from the rheumatologist. My latest bone density scan 2 weeks ago in Perth showed that I have improved, going back from full blown osteoporosis 8 years ago to osteopenia, which is like part way between normal/healthy bone density and full osteoporosis. So the strong bone regrowth drugs

Hello I haven’t posted on here before as I am trying to see if I have registered properly. I have osteoporosis in a lot of pain. I have shrunk in height and become stooped as I had back fractures, the dexa scan was unclear. Currently waiting for dental treatment before the infusion.

(Moderator's note - this post discusses difficult emotions and references psychological difficulties with tinnitus. If you need support with anything discussed in this post, please contact one of the organisations listed here - https://www.helpguide.org/find-help) I developed tinnitus after

I was unable to continue on Alendronic tablets so was switched to annual infusions. The regime was one infusion per year over three years and my last one was on 20/8/21. I was unaware that this treatment comprises certain dental treatments, I know of extractions but uncertain if it applies to anything

Coming up to my 2 year anniversary on prednisolone and I seem worse than ever. On 6 mg daily atm. A lot has gone on in the last few months, a 3 week trip to Mexico in November and woke up on the day of the flight out, barely able to move, having had a few good months until then. Bunged my dose up

I've been taking pramipexole since the summer of 2020 to address severe RLS symptoms that started around the same time as the first Covid lockdown. Initially I was prescribed two 0.088 tablets but this was soon increased to four. Because I was aware of the augmentation problem I tried to stick to just

Well I met my consultant at a Glasgow hospital yesterday after about 2 years (I'm on the maintenance list now). I came armed with lots of paperwork to give him but didn't need to hand it out as he knew a lot. He was particularly pleased about the change to the NICE guidelines to drop the DAs and use

Hi guys, i havent posted on here for a while. Last year i eventually got off the horrible Ropinirole with no help from my GP. I was told to come straight off in which i did until i found this place where i started back and came down slowly. It was hell, body spasms, anxiety and depression, 4 hour nights

Hello every everyone I did I post before but not sure if it came up,as I'm not used to posting stuff. So I tell my story again. I've been on 0.125 pramipexole for about 14 yrs for RLS and noticed some time ago my legs got worse. So no and then I would add another half. Then noticed it was getting worse

Two weeks off requip.... gone on for a sleep study, no results yet. Contacted Dr. Andrew Berkowski. He can't see me until next week. Will cost close to 1000 $ but worth it if I get help. My symptoms have gotten worse. Legs start within 10 minutes of laying down. Mostly my left leg. Gone from just jerking

Have you seen this before? I just got my hubby to look this up (he’s a Dr) and send it to me as this is what my neurologist has mentioned in his letter as what he’s referring to. It was last updated Jan ‘24, but it’s interesting in some of its guidelines such as mentioning not using DA’s as first

From what we all observe here, most general practitioners and some neurologist are not approaching the treatment of RLS according to what is now the accepted protocol. But who is asking why? For many of us we just want to get better and this question does not matter. But for some who are concerned

We will see....but if it performs well, man, it's another proof of the concept. For example, check a company called InSilico and you will see how many big pharma companies are using their AI/ML services to develop their own solutions... Anyway...a clinical trial is soon to begin evaluating Pocenbrodib

I have been on Pregablin just over 3 weeks now after finally stopping the Neupro taper. My dose at present as of Monday is 150mg. I take this at 8pm. However around midnight the RLS kicks in.. not the diabolical stuff as with Neupro, nevertheless severe enough to keep me awake. Tonight I have taken 75

I've been taking 900mg of gabapentin with extremely limited success. I've not had any joy to date in getting opioids prescribed. My partner had some Codeine from a recent hospital stay and I've started taking this as a trial. To date (and it's early days) it seems to have been a game changer and I've

I was on pramiprexole for 15 years+. Gradually increasing until I discovered (me not my doctor who was clueless) the risks of augmentation. Started tapering down and was finally done with it about 6 weeks ago. The symptoms have been horrible. I started getting violent full-body convulsions when I try

I appreciate this may be trivial in the face of other posts on here but I'd appreciate any thoughts you may have. I take statins & Clopidogrel following a slight stroke 10 years ago. My dentists have advised I should keep taking both ahead of having 2 teeth out. They will apply stitches at the removal

There’s a new book on the market on RLS, published last year. “Navigating Life with Restless Leg Syndrome,” by Dr. Andrew Spector. He’s a friend and colleague of Andrew Berkowski. https://www.amazon.com/Navigating-Restless-Syndrome-Brain-Books/dp/0197657001 You can watch an interview on YouTube….

I've been using Tapentadol for chronic nerve pain for the last 5 years. It has worked wonders for me, and helped eradicate any pain I had previously been experiencing. However, I guess as is standards with most pain meds, its efficacy has dropped quite dramatically over the last 6 months or so, meaning

hi for those of you on here that can’t get on with opioids due to side effects what do you take for rls? i’ve heard good things about pregabalin but is it effective? thanks