For those that do not know my new neuro is trying me on several meds for RLS. The current one is Clonidine which appears to be helping, (just 3 days in).
I have reduced my Oxycodone which I am taking alongside from 30mls to 25 mls daily.
I asked if I could have an iron infusion and he said yes if my Ferritin is reduced.
My queries are:
* Why do I need to reduce my Ferritin?
* Have many people out there had an infusion for RLS, did it work, and how often does it need to be repeated?
* How do I reduce Ferritin? Is it stop taking Folate and B vits? And maybe Vit C?
Thank you all
Jane 😊
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smilingjane
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I imagine what he means by "reduced ferritin" is that you would have low ferritin. Under 75.
What is your present number?
I really don't follow the strategy of getting off oxycodone onto Clonidine. Clonidine should only be used for 10 to 14 days as a temporary aid to opioid tapering.
Need to dig out my blood test history so can't answer the F. level atm. It is high though, I take sups. Prof meant to reduce Ferritin to have an iron infusion, but why? I don't understand.
Long term stratagy is to find a drug that suits and hopefully bring me off Oxycodone, or if that dosnt work start Buprenorphine sublingual.
The drug list to try is:
Rotigitine - side effects flashing light and cruching head sensation - STOPPED
Prepanpan - tried and had mood lowering effects - STOPPED
Clonidine - started few days ago. Take 100mcgs at night and appears to be working so far, and I am aware it is a low dose.
The idea is to go through this list and try to reduce Oxy co-currently. So far reduced from 30 to 25 daily. (3 weeks so far.
The reason I sought this Neuro out, (thanks Jules) is because the 30 daily Oxy wasnt covering my 24/7 RSL.
My plan was to ask for Buprenorphine sublingual.
Neuro said to aim for 20 ml Oxy daily and then if the three drugs mention don't do the job then he will consider Bup. He also said that if necessary I could go to the hospital he is at in London and come off the Oxyycodone there. He said to consider Bup that I need to have reduced my Oxy to 20 mls daily.
Not sure why?
I am interested in the 14 day tapering using Clonidine. I wonder why that is, is it a dangerous drug long term?
I don't particularly like it. I was lying in bed thinking and realised that as a thought came into my head it disappeared before I could think about it. Quite scary.
Maybe these early side effects will diminish?
But I have to consider is that better than opiods. Iv'e had 3 years on Oxy, and its probably saved my life.
However I do think it may have added to my depression and coognitive/memory issues.
Thank you for responding. In my email to Prof, I asked if an infusion could be considered. I have popped his response at the end of this msge.
Yes, maybe I have missunderstood, I think your right.
I may have got this completely wrong but I thought there could be situations where iron dosnt reach the brain because for some reason it dosnt get through the blood brain barrier. I was under the impression that it can be the case that happens but it is not reflected in blood results which come back as normal.
But maybe thats iron blood results and not Ferritin. Maybe I am thinking of anemia. I have heard though that anemia isnt always showed up in blood results and that there is a different test involving iron reaching the brain.
I had colon surgery which also hinders absorbsion.
I cant understand why I have a yellow/grey palor when up to 3 years ago I was very rosy?
🤔
reply from Prof Walker
If the ferritin is reduced than an iron infusion would be worthwhile.
High ferritin levels are often caused by inflammatory conditions and chronic inflammation is often the cause of rls. I have eliminated my rls by avoiding inflammatory foods like refined carbohydrates and starches and refined vegetable oils.
I have just started my son on clonidine (he has severe PLMD and insomnia) to replace gabapentin and clobazam, and depending on how he goes, thought i might try it for myself.
I have been taking pregabalin (and a small dose of clonazepam) for nearly 8 years now and though it works 80% of the time at the dose i'm on, i'd like to try something else to see if it works any better.
I'm also looking into microbiota transfer therapy (fecal transplant) but having trouble finding a gastroenterologist who'll do it.
I'm glad to hear buprenorphine works well for you.
Thhe fecal inplant sounds interesting. Might look into that. Out of interest are you on a high dose of Pregab? Any side effects?Good luck with your son. Clonidine does work for some people 👍
I'm on 300mg of pregabalin nightly. I do experience side effects eg. a feeling of being permanently out of it, slightly blurred vision, reduced cognitive functioning, hence my desire to try something else.
Sounds like a plan. Most drugs have sife effects. Its finding the 'kindest' one for you. The major issue with Buprenorphine is getting it! Theres so much anti opiod rhetoric around, gps are often scared to prescribe.Consequently I feel a low level anxiety about having it long term.
I hope that as awareness is raised and gps bevome trained properly in dealing with RLS these issues will ease.
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but when I do eat it is fish, veg etc, little else.
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