I have got in a real mess with my RLS and I desperately need help

[Joban1]

Firstly thank you all for your contributions which have helped me so much. I am a highly active 78 yo and have had RLS since I was 18yo

It has progressed in a classic way. Fived years ago I was introduced to Pramipexole by a consultant at hospital. It was a godsend and completely cured the symptoms. However of course the augmentation set in and I reached the maximum dose at the end of last year. Since then I have been switching over to Gabapentin. I have slowly reduced the Pramipexole to zero with no effects other than on the RLS. At the same time since Christmas I have been increasing the Gabapentin to find a satisfactory dose. At the moment I am on 12x 300mg spread over four doses in the day. I believe this is a high dose

Unfortunately though I am suffering my absolutely worst attacks almost every day. Start about 5.00 and finish whenever. I've been woken at 1.30am by elevating off the mattress and thrashing around.

My GP has been very helpful and is allowing me to find the right dose.

I have been taking two OTC iron tablets every day for over a year

I have had a recent iron panel test the results being said

by my GP to be normal however I don't understand the results

I would appreciate any help you can give

[ChrisColumbus]

Sorry to hear of your trouble. Did your doctor give you the actual iron panel results? If so, post them here and SueJohnson (who I see you follow) or one of the other experts on here like Joolsg will be able to interpret then for you. And they will also be able to give you other helpful advice: you are not alone here!

[JOBAN1uk in reply to ChrisColumbus]

Thank you ChrisColumbus I have appointment with GP on Monday to find exact results

[SueJohnson]

First off there is no real benefit to taking iron twice a day as it is less absorbed that way. On your ferritin test did you stop taking your iron 48 hours before the test, fast after midnight and take it in the morning? If not, it won't be accurate. And doctors will say your results are normal when what is normal for others is not normal for those of us with RLS. On the gabapentin yes that is 3600 mg daily and is the maximum dose. The reason it is not helping you is first off taking a dose higher than 600 mg at a time reduces it's absorbancy. Secondly you don't need it during the daytime unless you had symptoms during the daytime before you went on pramipexole. You need it at night and probably don't need anywhere near that much. According to the Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin." But to cut down on your dose you need to do it very slowly or you will suffer withdrawal effects. So first ask your doctor for pregabalin. The equivalent dose for your 3600 mg gabapentin is 600 mg. Since you are having problems at 5:00, take 300 mg at 4:00 and then the other 300 mg 1 to 2 hours before bed. Try this first for a week or two. You will need to get some smaller capsules than the 300 mg however so that every couple of weeks you can reduce your total dose by 25 mg. It's possible you can reduce faster than that but be aware of possible withdrawal effects such as insomnia, headache, nausea, anxiety, diarrhea, flu-like symptoms, pain, excessive sweating, dizziness, confusion, and palpitations.

[Joban1 in reply to SueJohnson]

Thanks Sue that is so helpful. Yes I did do the test as you stated as I had read an earlier post of yoursIs it ok to go straight to the 600mg of Pregabalin and can I take it now whilst I am tapering off the Gabapentin?

Your help is greatly appreciated

[SueJohnson in reply to Joban1]

You do not need to taper off the gabapentin. You can do a straight switch to the pregabalin.

[SueJohnson]

P.S. Until you can get the pregabalin and you might want to phone your doctor and see if she can prescribe it without waiting until Monday, try taking 600 mg 1 hour before bed, 600 mg 3 hours before bed, 600 mg 5 hours before bed until you are at least 2 hours before 5:00. Then take the rest in 900 mg doses as far apart as possible but all before the earliest of the above schedule.

[Joban1 in reply to SueJohnson]

Thanks Sue I will start that in the morning

[Joban1 in reply to SueJohnson]

Sue. Many thanks. I have now reduced my dose of Gabapentin to 4x600 taken at the times you stated. I have had no side effects from the reduction so farMy RLS is mind blowingly terrible at times. The late afternoon/early evening attacks have subsided but I am suffering terribly overnight I even woke up one morning on the floor.

This morning was a first with an attack at 7.00am

I am speaking to my GP practice on Monday and I will ask to switch to Pregabalin. With the fact I have reduced my dose of Gabapentin what dose of Pregabalin shall I ask for now. Am I right in saying I can stop the Gabapentin straight off if they agree to your advised dose

If they insist on a starting dose with a build up

can you suggest a crossover routine

I should get the exact result of my iron panel test which was performed as you advised. I will post the results

Thanks Sue

[SueJohnson in reply to Joban1]

400 pregabalin is equivalent to your 4 times 600 dose. Yes you can switch directly without weaning off the gabapentin. See pubmed.ncbi.nlm.nih.gov/230... If they insist on a starting dose with a buildup then you need to wean off the gabapentin very slowly to get down to the equivalent of the starting dose. The equivalence is 6 to 1. Eg 600 gabapentin = 100 pregabalin.

[Joban1 in reply to SueJohnson]

Thanks Sue you are a gem!

[Joban1 in reply to SueJohnson]

Thanks Sue

Doctor very helpful and is proscribing the 400 Pregabalin. He says two doses of 200. Is this best. Is there a time limit before it starts working?

He is also issuing Tramadol to help when I still get an attack. Is this the best answer.

Results of blood tests conducted as you advise.

Ferritin 224

Iron 13.4

Transferrin. 2.47

% saturation 21

Does this need attention?

Kind regards. John

[Simkin]

Gosh I really do sympathise having had rls for ever, although I am a young 72 year old!I came off pramipexole and am now on 2,100mg gabapentin.

I take mine as 300mg at 4.30 (should I put it up to 600mg????)

Then 600mg at 6.30. 600mg at 8.30 & 600mg at 10.30.

Still my rls is not good.

Sadly I had a bad reaction to pregablin so I have nowhere else to go.

Did your high dose of gabapentin work for a few months or so or not at all???

I am wondering whether to up my dose again for some relief???

[JOBAN1uk in reply to Simkin]

So far Simkin it seems not to have worked - it could of course be much worse without it

[Simkin in reply to JOBAN1uk]

Yes Joban that is the rub. I also feel the same. The gabapentin seems not to be working but would life be hell without it?Life is bearable at the moment because I can have an hour's sleep in the afternoons & when we go out my husband drives because I CAN sleep in the car.

However I long to be active all day as I get so little done.

Simkin

[SueJohnson in reply to Simkin]

What about an opioid?

[Simkin in reply to SueJohnson]

Sue thank you for yet another suggestion. No wonder we all rely on you for such great support.I could speak to my GP and see what he thinks about an opioid. I have to say I am terrified I would become addicted.

Simkin

[SueJohnson in reply to Simkin]

You might want to print out the appropriate section on Opioids in the Mayo Clinic Updated Algorithm on RLS to show him/her if s/he is reluctant to prescribe it as many doctors are at Https://mayoclinicproceedings.org/a...

[Simkin in reply to SueJohnson]

Thank you Sue. I will show this to my GP & let you know how I get on.

[Hidden]

600mg of pregabalin is a very high dose, and as someone who lives with adverse side effects on a 300mg dose, I'd caution against it. As SueJohnson has pointed out, the way you're taking gabapentin is diluting its potential efficacy. You may not even need as high a dose.

My suggestion would be to try a lower starting dose of pregabalin and see if it works at the lower dose.

You'd need to figure out a plan for transitioning between gabapentin and pregabalin given the non-commensurate doses.

[Rosyrestless1]

I am curious to know, do you also have digestive issues?

[JOBAN1uk in reply to Rosyrestless1]

No none at all

[kcraig]

I was on Ropinerole for a few years with moderate results (plus terrible nausea). I found out I was still having legs movements in my "sleep". I felt horrible. I found a Dr. that tried my on a low dose of Methadone that worked like magic! It saved my life! Gabapentin was useless. I really hope you get relief soon. RLS is a horrible condition.

[BettyRae]

You said your RLS started at 18 yrs old, then it’s genetic. Iron probably has nothing to do with it. I’m 79 and have had RLS since I was 15. Over the years I’ve had iron infusions, made no difference. I’m taking a combination of four different drugs right now .

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