I am getting there but…

[Jukebox55]

Back here again… so helpful in the past, and need your help again!

I have been slowly coming off pramipexole over 4 months, reducing tablets by a half every month. I am now on one and a half tablets. I have been taking gentle iron, 40 mg at night, with Vit c.

My bloods tested in Dec when I started reducing were

Serum ferritin 48 / serum iron 14.1 / serum TIBC 53.7 / transferrin saturation 26%

I had them tested again (not morning fast this time … ) in late March and these are the results

Serum ferritin 82 / serum iron 11.8 / serum TIBC 51.1 / transferring saturation 33%

So the serum ferritin is going up but not the others. Is this cos it wasn’t a morning fast test?

Any thoughts. Should I increase the gentle iron to 60?

My GP, after I had thoroughly educated her with articles inc the Mayo algorithm, said she would not prescribe me gabapentin or pregabalin. Worries about addiction.

So now that the restless legs are improving 50 to 70% better though still cannot sit still in the cinema etc. but my sleep is now very disturbed, waking constantly but feels different to my previous insomnia (30 years’ worth!)

I need advice now. Should I go back to the GP ? Should I try asking for Buprenorphine? Or iron infusion? Or is there a private doc that I could consult? (Oh and I have bought some red kratom but unsure about starting it).

Any help is very much appreciated. Many thanks in advance and in hope!

Les

[SueJohnson]

Congratulations on getting your pramipexole down and that's great your symptoms are improving. I would ask your doctor about your TIBC and serum iron. Your ferritin may be higher than it would be if you didn't have a morning fasting test and if you didn't stop any iron including in a multivitamin 48 hours before the test. There is no point in increasing your iron and more won't be absorbed. You could ask for an iron infusion but you are apparently doing well taking the gentle iron. You need to ask a referral to a neurologist or if your doctor won't give you one then yes see one privately so your can get gabapentin or pregabalin.

[Jukebox55 in reply to SueJohnson]

Thank you so much for such a prompt reply. So I know I have understood … keep taking the iron, try and get gabapentin or pregablin somehow… no point in asking GP for Buprenorphine, as assume that will get the same opioid response from GP. But should try again?!?!?! Many thanks. Les

[Joolsg]

I am totally shocked that your GP prescribed Pramipexole as late as 2016, when the high rate of augmentation was known.I'm also shocked that he/she won't prescribe pregabalin/gabapentin because of addiction concerns.

Drugs for RLS at these low doses are not addictive unless the person has addictive tendencies or history of abuse. Same goes for opioids.

We are 'dependent' on our meds. But so are others with chronic, incurable neurological diseases like MS or Parkinson's.

If we stop our meds, we'll get withdrawal symptoms.

Pramipexole has the WORST withdrawal symptoms so no idea why your GP was happy to prescribe Pramipexole but not pregabalin.

The NICE cks guidance lists pregabalin as RLS treatment, as do most NHS resources.

Show your GP the RLS-UK website and the training module by KISS - the largest GP training company in the UK. Your GP may then be prepared to give you pregabalin or opioids.

You might benefit from an iron infusion and several private doctors will arrange it for RLS in the UK.

Prof. Walker at Queen Sq will do so.

nbmedical.com/kiss/kiss-res...

But well done for getting so far in the Pramipexole withdrawal! It's not easy.

[Jukebox55 in reply to Joolsg]

Thank you so much. Your indignation has fueled my spirits!

[Joolsg in reply to Jukebox55]

I spend my life raging against medical ignorance of RLS!. It's appalling.

[Whymelord in reply to Joolsg]

I second that Joolsg,I'm at my wits end trying to get my gp to even discuss the meds I'm on for RLS.I have high blood pressure and so by the time I even get to talk to a doctor on the phone about meds my blood pressure hits the roof,I'm going round in circles trying to get help, they just don't seem interested concerning the syndrome, oh by the way I'm completely off Pramipexole now,have to say my RLS is still horrible but Pregabalin is helping, thanks for all your help and advice.

[Joolsg in reply to Whymelord]

If it doesn't give you decent cover, do consider pushing your GP for different meds. I wasted 5 years believing Prof. Chaudhuri and his team when they said 4 hour's broken sleep at night was as good as I could expect. No mention of iron infusions or different opioids.I have had zero RLS since I switched to Buprenorphine 18 months ago. I wish I had pushed for it earlier.

You may have to get an appointment with a neurologist, which takes over a year in the UK at the moment.

[Whymelord in reply to Joolsg]

Thankyou Joolsg,I'm in the North of Ireland,the last time I spoke to my gp she was going to prescribe Ropinirole, I'm sure she already knew that I was on Pramipexole and trying to wean off them if she had checked.of course I will not be taking Ropinirole ,not sure if she is aware of other meds for RLS but I will inquire.

[Joolsg in reply to Whymelord]

Bedith is in N. Ireland & she was prescribed Buprenorphine by Prof. Walker via telephone consultation. Her GP continued the prescription. So it is possible.

[Whymelord in reply to Joolsg]

Oh thankyou Joolsg.

[SueJohnson in reply to Whymelord]

That's great that you are off pramipexole !!!

[Whymelord in reply to SueJohnson]

Hi SueJohnson,yes I can't believe it myself,I did find it really hard and must admit I took half my dose a good few nights but thankfully I got off them and to think that my gp was prescribing Ropinirole last time I spoke with her.I wasn't doing well on Pregabalin at the beginning but it does help although not completely, I take 2 cocodamol before bed,again helps but not all the time it's a matter of trial and error, went to bed about an hour and a half ago but here I am walking around downstairs again making some Camomile tea (2bags in a cup)maybe take another cocodamol depending how long I need to stay here and if my legs will settle.good luck to you.

[ChrisColumbus]

Good news that your ferritin is improving and your TSAT figure is nicely in the 'normal' range for women of 16%-45%.

Hope you manage to get a prescription for either gabapentin/pregabalin or buprenorphine!

[Jukebox55 in reply to ChrisColumbus]

thanks!

[Moonwalker1967]

I had to see a neurologist in the hospital who then prescribed Pregabalin and repeat prescriptions are through my GP. No problems. I am allowed to up my dose to 300 mg. Am on 150 mg now and staying there as it's helping.

[Jukebox55 in reply to Moonwalker1967]

great and well done!!

[Tanker1]

It strikes me as totally ridiculous that your GP won't prescribe gabapentin or pregabalin, especially after you shared the mayo clinic paper. I've been on both of these meds and I can't understand why anyone would become addicted. Nor can I understand why a GP would worry about that. I understand that the drug is a schedule V drug in the states which I also find utterly ridiculous. Neither one gets me high, just foggy headed and stupid. I hate both drugs and desperately wish I could find something else.

I was able to raise my ferritin with oral iron from 12 to over 100 but it took about 3 years. I also had an infusion. Sadly none of this helped but I understand it does help 60 % of RLS patients so give it a try. My other blood iron parameters did not change appreciably. The general guidance is that ferritin should be over 75 (or is it 100?). Some convincingly argue that for RLS patients it should be over 200.

If I were in your position I would either go back to the GP and press them for gabapentin, pregabalin or one of the opiates (good luck with this one) or find a new doc.

Give the red kratom a try. I use it occasionally and it seems to help.

[Jukebox55 in reply to Tanker1]

thanks for the advice! It is of course ironic that the very doc who prescribed pramipexole is now the doc who wont help me get off it!! Thanks for your advice!

[Lor7]

On the NHS website for RLS they list the following as treatment for painful RLS so not sure why you can’t get Gabapentin:

Painkillers

A mild opiate-based painkiller, such as codeine, may be prescribed to relieve pain associated with restless legs syndrome.Gabapentin and pregabalin are also sometimes prescribed to help relieve painful symptoms of restless legs syndrome.Side effects of these medications include dizziness, tiredness and headaches.

[Jukebox55 in reply to Lor7]

doc is worried about addiction… when she should be worried about my mental decline going back to not sleeping!! Thanks for responding.

[Lor7]

Totally agree re the non sleeping. I decided to taper off Clonazepam again, did that 13 years ago to try the new DA drugs which did not work nor any of the others eg Gabapentin etc (had a really understanding GP back then). Clonazepam didn’t help massively and I have noticed I was staggering around when getting up in the night! I also accidentally found that Codeine, had some over from an operation, actually helped a lot (so I’ve been taking them at 1x 15 mcg when I need to). Just waiting now to see GP in a week or so and hoping he will prescribe codeine! We moved here a year ago and I haven’t met any of the GPs yet, so I have my fingers crossed, if he won’t I don’t know what I’ll do.

[Jukebox55 in reply to Lor7]

beware constipation with regular use! Go prunes!!!

[Lor7]

yes indeed and already have to take Cosmocol daily!!