My RLS is slowly getting worse

[Oscarsaurus]

My rls has been controlled the last few months but lately its getting so much worse. I take the lowest dose of pramipexole but also take 1800mg gabapentin and co codamol for chronic back pain. My rls is affecting me alot during the day even tho i have stopped having sugar which normally helps. I am wondering if i need folic acid and ferrous sulphate again. I am having my bloods taken Wednesday but obviously have to wait for the results before i am prescribed anything. I should of known the relief would not last. Any advice would be a god send

[Lapsedrunner]

This could be augmentation. There’s a pinned post about it on the home page, have a read.

Essentially one experiences symptoms earlier in the day, in other areas that didn’t have it before and generally more intensely than before dopamine agonists started (pramipexole is a dopamine agonist)

Of course your iron levels may have decreased.

Please don’t be tempted to increase your pramipexole.

[Oscarsaurus in reply to Lapsedrunner]

Thank you i did think maybe augmention but i am hoping its due to my iron levels

[involuntarydancer]

It could be reducing iron levels and you’re doing the right thing getting serum ferritin checked. Unfortunately it could also be augmentation which can afflict even on a low dose of dopamine agonist. It could be a blip. Sometimes my rls waxes and wanes. Is there any change in your lifestyle, diet or medication which is making it worse?

I know it’s not what you want to hear but once you have eliminated reduced iron and other possible causes, you might need to try eliminating the pramipexole for a while to see if that results in improved symptoms (you will need to stay off it for more than two weeks to be sure).

[involuntarydancer]

Hi Terry, i just looked back through your posts. Are you still taking amitryptiline? Have you eliminated all/some of your opioids? Do you still have the same GP?

I had forgotten that you were previously on ropinerole. It is in the same class of drugs as pramipexole and the fact that you didn’t get on well with ropinerole may explain why the pramipexole is not hugely effective for you.

It is important to remain positive. There is likely to be a good treatment option out there for you but it sometimes takes a while to get things right. I would definitely look at the serum ferritin again and make sure you get the actual figure - not just that you are ‘nirmal’

[involuntarydancer in reply to involuntarydancer]

Or even ‘normal’!

And I second what lapsedrunner says: on no account should you increase the pramipexole.

[Oscarsaurus in reply to involuntarydancer]

My gp is brilliant so if i say my levels need to be higher than normal he does listen . I had to repeatedly ask my last gp to have my bloods checked and finally when i did she had to write me a prescription for folic acid and ferrous sulphate. Thank you for your reply

[Oscarsaurus in reply to involuntarydancer]

No i stopped the amitriptyline quite a while ago. I augmented when i took the ropinierole because my gp at the time increased them quite quickly . The pramipexole have worked until recently so i am hoping its low B12 and iron well crossing ny fingers actually

[Hidden in reply to Oscarsaurus]

Increasing a drug quite quickly might increase the risk of side effects, but as I've written before, it's unlikely to cause augmentation to occur. Some people appear to be more prone to augmentation than others. It also appears that once you've suffered augmentation, you're more likely to suffer it again.

So just to back up what the others have written, it seems most likely, that even with the lowest dose of Pramipexole, you're suffering augmentation again. Sorry.

Hopefully I'm wrong, the blood tests might suggest something else.

On another note, did you have a PSA test?

[Oscarsaurus in reply to Hidden]

I am a woman so unless there is something i do not know then that test is impossible . The name Oscarsaurus is from my grandson but thank you anyway

[Hidden]

ooops sorry.

[Oscarsaurus in reply to Hidden]

Its fine you do not need to apologise

[Hidden]

Hello Oscar - have you looked up the drug profile analysis on gabapentin on yellow card scheme mhra Uk gov? The side effects of gabapentin have a high level of effects on certain parts of the body. The table found by using the drugs profile analysis has an alphabet list for you to find your drugs. Although the drugs.com website does not indicate the effects on the nerves of the body or the on the gastrointestinal system. If gabapentin is the cause of your restless legs which is used for epilepsy, then may be you are having side effects to this drug. The drugs might affect your absorption of iron, and you could also have a magnesium deficiency. I have had restless legs associated with diabetic neuropathy, but find taking magnesium carbonate and calcium helps as well as eating a banana and a glass of tonic water. I find a little banana and tonic water, helps within seconds, as well as taking z peppermint indigestion tablet with calcium and magnesium. Magnesium is high in bananas and in tomato juice. There is information that gives information on borax, sodium borate, which can reduce the level of harmful bacteria in your intestines, which might be affecting your nervous system. If the condition is worse then if you print off the information to show the side effects of gabapentin, on the gastro intestinal system and the nervous system, this might mean the drug may be affecting you or creating a neuropathy.

Hope you can take a print out to the doctors when you have your test, as may be you need to see if the drugs are undermining your iron, or affecting your digestive system and nerves. In the Uk you can ask for a print out of the tests, so you can check the levels of vitamins and minerals but magnesium may not be tested for. Wish you luck.

[Hidden in reply to Hidden]

Thanks for the info about yellow card scheme, which is a system for people to report any problems they're having with their medications. This might be generally useful about how to find information about drugs. The BNF is probably a better way.

Gabapentin, as well as being used for epilepsy and nerve pain is also used as a first line treatment for RLS and is therefore unlikely to cause it.

In order to avoid making the same mistake I made, which you have, it's always helpful to read all the posts in a thread before responding. Although I have to say, I had no such clues.

I'm sure Oscarsaurus (Mrs, Ms or Miss) will find the information about digestive system interesting, I have.

[Hidden in reply to Hidden]

Yes the yellow card scheme is useful and may give information not put on patient's leaflet. There is always the possibility of a drug affecting some people, with intolerance to the drug which could affect the liver. Having had drug intolerances affecting the liver, I am wary of drugs. This is my personal experience and does not apply to anyone else. Checking in case of side effects, is up to the person to evaluate if any area of their body has been affected eg hearing eyesight or digestion. Gabapentin has a high level of serious side effects as listed by the UK government Yellow card scheme. These results are objective and not influenced by sales and marketing. I did read the threads concerning augmentation and agree with you it would be unlikely that many people will be affected by the medication - I did not check the other drug Oscar was using.

[Oscarsaurus in reply to Hidden]

I only had bloods taken yesterday for B12 and iron levels but this was done by the nurse . I am due to see my gp next week tho and i will speak to him . I did read that gabapentin can affect the absorption of iron and mentioned it before to my gp but will mention it again . I will also speak to him and ask him if i can have another blood test to test for the bacteria in the gut . Thank you for all your advice

[Crochetfan]

I took magnesium, high dose vitamin B and folic acid which gave me a lot of relief. I also have varicose veins and when looking on line about them as they have given me a lot of trouble lately I read that varicose veins can cause a RLS. I don’t know if this applies to everyone with RLS. Hope this helps.

[involuntarydancer in reply to Crochetfan]

I’m pretty sure that the link between varicose veins and rls has been disproved and I would certainly do a lot more research before undergoing surgery for the veins in the hope it will improve rls. I have read posts from several people who were disappointed. You could consider looking at your iron levels also. Serum ferritin should be over 100 in rls sufferers and raising iron levels alleviates symptoms in about 50% of sufferers.

Incidentally, in view of your user name, a very absorbing activity can help when symptoms strike. I wonder does crochet fall into that category?

[Oscarsaurus in reply to Crochetfan]

Luckily i do not suffer with varicous veins but i am sorry you do . I do have magnesium tablets but just have to be careful when i take them due to taking gabapentin

[Sara_2611]

Maybe try putting cold water on your legs for a while or maybe try sitting down with your feet in a bath of cold water. For me personally I use Balneum cream which can be bought or have on prescription -I dont recommend you try it though in case it disagrees with your skin

good luck

[Oscarsaurus in reply to Sara_2611]

Thank you

[Sara_2611 in reply to Oscarsaurus]

youre welcome

[Chrissieann]

"I have ILS and it's so damn irritating and annoying, for the last couple of months I've been plastering my legs n feet with cream 'Nivea' whenever it rears its ugly head, and it works for me . Now this cursed problem is not stopping me from sleeping anymore". 😊

"I hope I haven't spoken too soon!!"🙄

[Hidden in reply to Chrissieann]

Great that it works for you. As long as it does, keep doing it.

[Oscarsaurus in reply to Chrissieann]

Would have be the original nivea cream please?