Thankful for this site!

[FluteE]

Hi all, I’m fairly new to the site and find myself reading posts daily. Mentally comforting to know that I’m not alone in this, but sad to know there are so many others out there.

As far as I know, I’m the only one in my family that suffers with rls. I know I’ve had rls for many years as I look back at the very early signs and symptoms. Only about 5 yrs ago did it become painful to the point of feeling like I was going imsane!

I’ve been taking Pramipexole .125 mg since then, which helps. Trying to get it in in time for the 2-3hr uptake is another story. I recently started having symptoms earlier in the day so I have increased to 2x daily with the night time dose being doubled.

I’ve also started taking B12, magnesium glycinate, probiotic, and D3 2000 mg. I have Theraworx mag foam (which I believe would help if I was truly deficient in magnesium).

Recently I’ve made the connection with sugar, so I’ve eliminated most all of it... morning Latte, Cappuccino is a must. Also, I have realized that I must drink “more than I care to” water. This tells me that diet is a big factor in keeping pain at bay.

Recently I have had more muscle twitches, crawling, and bug bite sensations as well as itching...yikes!

Any other suggestions are welcomed as I feel alienated with my family not understanding what I go through. I take something for depression as well. Please don’t suggest GABA as an alternate medication for rls since it makes my heart race and I can’t take it. I’m still good with the Pramipexole since my dose is still very low and it does ease the pain and do not feel that I am augmenting.

Again, thanks for being a listening ear!

[Pam34]

Hello and welcome

You seem well read up on everything- I would just caution you about increasing your pramipexole dose. The current thought is now to try and keep your dose as low as possible particularly as you say you are having symptoms earlier in the day a classic sign of augmentation.

You also say you are on anti depressants- check that these are not one of the drugs to avoid - all listed on the RLS-UK website.

And check out your ferritin level. Do not accept normal from your doctor. Ask for the figure - normal for RLS sufferers is over 100. If needed then iron supplements can help some people.

Good luck, Pam

[FluteE in reply to Pam34]

Thanks Pam34. I will check on my ferritin levels for sure.

[involuntarydancer]

Great advice from Pam. I second everything she says. You need to be super careful with pramipexole. It is a great treatment to start off with but after a while it can start to feed the condition in a phenomenon known as augmentation. At that stage it is pretty much necessary to discontinue the drug which is a dreadful process. I would suggest you search augmentation to check if you think it might apply to you.

[FluteE in reply to involuntarydancer]

So would it be possible that I could be augmenting with only using .125 Pramipexole just 1 x day?

[Pam34 in reply to FluteE]

Hi

Have I misunderstood what you said in your third paragraph? You mention symptoms earlier in the day so you have increased it to twice daily and doubled your evening dose? You can augment on any dose but obviously the higher it is, the more likely. Read -

rls-uk.org/augmentation-reb...

And also -

rls-uk.org/treatment/

Medicines to avoid are near the bottom. Check if you are taking anything to worsen the symptoms, particularly your antidepressants.

Pam

[involuntarydancer in reply to FluteE]

Although it’s not unknown, you are less likely to augment on a lower dose and .125mg is half the maximum recommended dose.

Augmentation becomes much more likely as you increase the dose. If you are experiencing breakthrough symptoms you would do better to introduce a second drug - possibly a low dose of lyrica (pregabalin) or even a mild opioid - to deal with them than to increase the pramipexole. It is also a good idea to keep iron levels high when taking mirapexin as there is a connection between low serum ferritin and augmentation so Pam’s suggestion of checking serum ferritin is a very good one.

Best of luck with optimizing your treatment.