Pennygates

[pennygates]

I've recently had a worsening of my RLS symptoms. Now all day and night, with the odd hour of relief despite taking oxycodone (which I take for arthritic pain as well). I'm still taking Pramipexole as well. I also have extreme fatigue, and weakness (I have ME too, and Crohn's disease). It's got to the point where I'm barely functioning. No energy, feel on the floor to be honest, and in a very low mood.

I decided to call my GP for an appointment. I have regular b12 injections, and thought I may be anaemic. I was told I had to wait another 4 weeks before I could see a GP, as it's not urgent.

In view of this, I thought I would pay for an iron test online to find out if I'm anaemic. Does anyone have any experience of these tests. They are expensive, so don't want to waste money.

Twice I have asked two different GPs to accept a copy of the Algorithm from the Mayo clinic, with its guidelines. They both refused it, saying it wasn't a treatment accepted by the NHS. I have given up trying to see a neurologist on the NHS. My GP sent an email to the hospital, asking for advice about treating RLS. They recommended Gabapentin . They took me off Pramipexole at the same time, completely. I tried it but was hospitalised with severely swollen legs for two weeks, and taken off the Gabapentin. They then gave me Pregablin, but it soon became apparent that I couldn't use that either. Then I was put back onto pramipexole after 8 weeks cold turkey. I had several falls and swollen legs.

The GP then decided that I could take oxycodone to help the RLS, as it is already prescribed for my arthritis. I take up to 6x5mg per day, every four hours, but the GP asked me not to take 6 per day, only UP to six on a really bad day.

I have managed quite well on this until recently and wonder what is going on. I take magnesium and zinc, and gentle iron plus vitamin C, and vitamin D. Any thoughts or advice would be most welcome. I have told some of this in earlier posts, some may remember. I'm now thinking of trying to see Dr Walker, neurologist from UCL in London, privately, although it is expensive, perhaps worth it to get some help.

Sorry for the monologue of misery. I'm quite an upbeat person most of the time, but struggling a bit right now.

[SueJohnson]

I am so sorry you are suffering so much. To me this does seem like it is urgent. Did you tell them what was going on? If not I would try again. You should ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning.

[SueJohnson]

Taking you off pramipexole cold turkey was terrible. However now that your RLS is getting worse and you are having it all day and night, you are suffering from augmentation and need to come off it but NOT cold turkey. To come off it, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need to increase your opioid dose temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it.

[pennygates in reply to SueJohnson]

Thank you , yes, I think I need to come off Pramipexole. It scares me, but things couldn't get much worse than they are, except in intensity.At the moment I'm taking 4x0.008mg Pramipexole each day. So do you suggest reducing it to 3 to start with?

Many thanks it's good to know someone is listening.

[LotteM in reply to pennygates]

Hi Penny, as Sue my reaction too is that I think your next course of action is to slowly reduce the pramipexole. Indeed, try to reduce to 3, and use your up to 6 oxycodon if needed. If necessary, go more slowly by reducing by half a pramipexole. I really hope this will prove the right thing to do.

Meanwhile, it may be wise starting to take iron. But if you currently have low iron stores and you cannot get an iron panel until much later, your iron meanwhile may increase (a bit). Taking iron to increase it is usually a slow process and it doesn't work for all. So re iron it is more complicated to give a straightforward advice.

[pennygates in reply to LotteM]

Hi LotteM,Yes, tye important thing I need to do now is to reduce my pramipexole slowly. A hard task ahead, I suspect.

I've managed today to get a phone consultation with a GP (my daughter rang the surgery, saying that it IS urgent, as I rarely go to the GP, and if I've tried to get an appointment I must be poorly , as I always resist going, )This opened the door for me. Like many others who have this awful condition, we know that getting medical people to take it seriously is an uphill struggle, so tend to suffer in silence, and depending on the wonderful advice and support from this site, from people who know the reality of severe Restless Leg Syndrome.

I'm having a full blood panel test next week. The 'iron' question is always tricky, as my GP practice don't understand about 'brain' iron. So my readings for ferritin by their standards is OK. My last ferritin test was 75, which my GP said was well within the normal range. How do you begin to explain to a doctor why that isn't so. When I attempted, clumsily to do so, the doctor said , kindly, 'please let me deal with the science bit'! My heart sank, and I knew I was beaten. Getting British GPs to even glance at the Mayo Clinic Algorithm is impossible. One GP said to me she could only go through the NICE system, legally, as the Mayo Clinic is outside the NICE jurisdiction. Heaven forbid any leading research group might know more than NICE!

Thank you so much for replying to me.

[LotteM in reply to pennygates]

Difficult, especially with such an attitude from your gp. I find the May Clinic Proc algorithm very clear, with an excellent and ver useful summary through the use of (summarising) boxes.

Why not make a printed copies of Box 1 and 2 and edit them to make the various conditions (if-then) stand out. Or do you think your doctor needs to understand more of the why given his reference to 'science'. What a belitteling remark by the way.

Anyway, if you get an other iron panel, just ask for the actual results (printout) and you can at least take oral iron if indicated.

[pennygates in reply to LotteM]

I did do something similar for my GP, by highlighting relevant areas. But he refused to look at it. Hey ho. I do get a print out usually of my results. I take oral iron (gentle iron) and vitamin c.

[eliz45 in reply to pennygates]

Hi. You are going through hell and it is so unfortunate that the medical establishment is not listening to you. So here is a safe way to get iron just in case. It is slow but works. There is something you can buy on Amazon or at the LuckyIronFish website called the Lucky Iron Fish. It is marketed to help people who are anemic and you use it every day. You boil 4 cups (or a Liter) of water, You place the little iron fish into it and add 3 drops of vinegar. Then boil it for 10 more minutes. Take it out carefully, let it cool and put it away. Keep the water and drink it all day. It is similar to the use of wrought iron pans for cooking. This is legit. Research it. It is being used in countries where children are anemic. It says that after 3-6 months you will restore your iron reserves. I know it has helped me quite a bit. And it keeps you hydrated. Good luck.

[pennygates in reply to eliz45]

What a novel way to ingest iron. Why not, and hydration is good. Thank you

[SueJohnson in reply to pennygates]

Thank goodness even though doctors are stupid about iron, it doesn't require a prescription. I remember you are taking gentle iron. You probably know this but just in case you don't, take your iron tables with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc take them at least 2 hours apart since they interfere with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. Also antacids interfere with the absorption so should be taken at least 4 hours before the iron or at least 2 hours after. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after after 3 months since you are taking iron tablets.

[pennygates in reply to SueJohnson]

Thank you. Didnt know about antacids either.

[SueJohnson in reply to pennygates]

Yes.

[SueJohnson]

Since oxycodone is so short acting, I would suggest you ask for buprenorphine which would work longer.

[pennygates in reply to SueJohnson]

I would like to ask for it, but I'm so lucky to even have oxycodone. Nothing ventured nothing gained I suppose. .I did have a mixture of slow release and shortec at one point, but it wasn't enough to suppress the RLS. Maybe the dosage needed tweaking.I think to get bupenophrine it would be better to get it prescribed by Dr Walker in London. Then no arguments from the GPs.

[Joolsg]

Oh Penny. I am so sorry you are suffering so badly. This is a classic case of poor treatment because of complete lack of knowledge amongst GPs and outdated NHS advice.To take you off Pramipexole cold turkey was very, very bad treatment. Even the NHS website advises against that.

As you have Crohns, it's highly likely you are anaemic and that a full panel blood test is essential. To say your case is not urgent shows the lack of knowledge and understanding about how serious RLS is. Your case IS urgent!

You need a blood test NOW and very probably an iron infusion.

Crohns causes poor iron absorption in the gut.

Oxycodone 30 mg is the average dose for RLS. There is no reason to take less than 30mg if it was covering your RLS.

If your GP refuses to accept the Mayo Clinic Algorithm, they will hopefully take notice of NICE guidance? There is a NICE study on Targinact ( Oxycontin and Naloxone). The max dose in that study for RLS is 60mg. Double what you are now taking.

nice.org.uk/advice/esnm67/c...

Follow Sue's advice to reduce Pramipexole. RLS will get worse as you drop each dose. When it settles, drop another dose. The 2 weeks after the last dose will be bad but then it will settle and you can see if oxycodone covers all symptoms.

Often oxycodone doesn't work well because it doesn't last as long as it's supposed to and RLS patients suffer mini opioid withdrawals, the main symptom of which is RLS.

You could pay to see Prof. Walker (I think it's around £360) and he would recommend blood tests and arrange an iron infusion. He would also switch you to Buprenorphine if 30mg Oxycodone doesn't work in the future.

I suggest you write to the surgery and the practice manager saying your case is urgent as you are suffering badly with RLS and not sleeping.

[pennygates in reply to Joolsg]

I think the only way I will get to see a specialist is to pay , especially someone as experienced as Dr Walker. I've just managed to get a doctor to talk to me now. My daughter rang the surgery and said it WAS urgent, so something has happened. The GP said full blood panel next week, which I'm relieved about. I've had a talk to her, and she sounded helpful, so I'll go and get the tests.

I think l want to see Dr Walker, as my GP surgery isn't up to speed with RLS. Interesting information about new NICE guidelines. Will ask her about that when I speak to her after blood tests.

I'm sure I must stop Pramipexole, but can reduce that myself. My full daily dose at the moment is 4x0.0888.mg. I don't know if that is a high or low dose.

Thanks again for your generous support and advice.

[Joolsg in reply to pennygates]

The NICE Oxycontin guidance is from 2015, so plenty of time for GPs to read. But they don't. Even neurologists are totally lacking in knowledge. Read today's posts about neurologists trying to increase Pramipexole when the patient is clearly suffering augmentation. Most neurologists know zero about RLS or effective treatments.

4 x0.088 is quite high. But even 1 x0.088 is regarded as too high amongst experts.

You can slowly reduce now and the oxycodone should help.

Prof. Walker might be your best bet.

[SueJohnson in reply to pennygates]

The .125 I mentioned is the equivalent of the .088.

[pennygates in reply to SueJohnson]

Thanks Sue

[Eryl]

Do you eat a lot of wheat based foods? The starch is easily metaboised into glucose which will cause inflammation which can affect all parts of the body including the nerves, joints and intestings, Added to that, the gluten in the wheat causes leaky gut which could be the cause of the Chrohn's. Another possible cause of Chrohn's is emulsifiers found in processed foods as they are basically detergents which can strip the protective mucous lining and soluble fibre from he gut walls. The answer is to avoid processed food including bread, cakes and things like ice cream, chocolate and prepared sauces which contain emulsifiers. youtu.be/UbBURnqYVzw(Not working as expected?)

[pennygates in reply to Eryl]

Eryl, I've lost the replies I have sent you.Many thanks for your suggestions. I do eat bread (not much) sometimes a biscuit, but I try not to eat processed foods at all. Its hard to know always what you are eating. I don't like ready meals, but I guess you may be right about leaky gut.

Thanks so much for the link. Much appreciated.

[Marlayna]

hi there and I’m sorry you’re suffering. I wanted to note that I had my RLS relatively under control for sometime. However, once I started taking more OxyContin, I am having bouts throughout the day and night now. This is new. The only thing I have changed is adding more Oxy.

I’ve seen other people posting about the same here recently. I’m wondering if generic Oxy isn’t as effective or different brands of generic OXY aren’t as effective? I used to take 5 mg before sleep and be out all night. Now I’m up to 30 throughout the day and this is not a path I’m interested in walking.

[pennygates in reply to Marlayna]

Hi, From what I've been told on this site, the four hourly shortec (oxycodone) will produce withdrawal symptoms slightly towards the end of each dose. This withdrawal will cause RLS. I've tried a combination of long release twice a day, and a lesser dose of the 4 hourly shortec with mixed results.

In my case I think the pramipexole is muddying the waters, and augmentation is causing my RLS as well.

I can well understand that this far from ideal for you. It seems to be a 'make do and mend' system. But these are our bodies, and we have to live with them. So I agree, not a path to be walked if possible.

[Marlayna in reply to pennygates]

thank you for your response. That is exactly how it feels in that withdrawal starts and RLS kicks in at about the fifth hour. I feel like I’m tied to a pill bottle now and having to pay such careful attention to when I take it and go to sleep as quickly as possible to try to sleep through the point where it wears off. I am just exhausted.

[pennygates in reply to Marlayna]

Exactly Marlayna, I'm the same. I have a routine of 8am, 12pm, 4pm, 8pm, 12am, 4am. You know you can't wait until the 5th hour, or the RL kicks off, and it takes ages to settle it down. Sue and Jools have mentioned that a longer lasting opioid would be better. I know there are long lasting patches which last for several days, such as bupenophrine. I'm no expert in these things, but there are some people on this site (such as Sue and Jools) and others, who are far more knowledgeable than I am who can help with that. As Jools said, we all need to become experts with this condition. Without this site I would be lost. But I've learnt a lot from other members.I hope you can find some answers to help you, the exhaustion is hard to deal with.

[Marlayna in reply to pennygates]

thank you Pennygates. To you as well!

[Loopylegs]

You poor thing, you are really suffering, I was on 0.08mg ×1 tab at night and I found it extremely difficult to come of it, you were on 4 tabs and the doc took you off it cold turkey! I'm gobsmacked but not at all surprised. I agree with the others, taper off it slowly, I'm down to just under half a tablet now, I take 900mg Gabapentin and 60mg codeine at night, and while I have rls all day long, it's now confined to my right leg and sometimes my arms, whereas I used to crawl all over when I first tried to come off it, as you can't take gabapentin I agree with the others, a long acting opioid to help u is what the Dr should give u, I can't get a Dr to give me one here in Ireland even though some doctors do, but I'm delighted to say that my symptoms are slowly improving and I'm very positive about being free from pramipexole, and it's not down to a GP, it's down to the wonderful advice from everyone here, I wish you all the best, and hope your symptoms settle soon. Also, my sister has colitis and has rls, she had her bloods done, low iron, was given an iron infusion and within a couple of weeks she noticed her rls had disappeared, so any inflammatory bowel disease will result in low absorption of vital vitamins and minerals x

[pennygates in reply to Loopylegs]

Hi, Many of us know to well the different levels of agitation and legs that will not rest. Of all my complaints, RLS is by far the worst to manage. Those nights and sometimes days when legs and arms drive you to distraction. Well done for. reducing your pramipexole

I've never had any useful advice from my GP on how to manage RLS. One GP told me that it isn't an illness, just a minor irritation, and to get over it. This was the doctor who reduced my pramipexole from four x 0.088 per day to zero, overnight, and told me that I should be grateful that I didn't have a 'real' illness. I'm afraid of running out of options. Nowhere to go, although I live in hope.

I hope your right leg will calm down as you reduce your pramipexole to zero. Good luck and thank you.