New here,

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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RLS113
Posts: 11
Joined: Fri Oct 14, 2022 9:13 pm
Location: New Hampshire

New here,

Post by RLS113 »

Hello,
I’m brand new here and hopefully I’m posting this in the correct place. I have been on .25 Ropinerole for at least 10 years and recently needed to slowly up it to almost 2 mg for relief. Unfortunately the increase has caused severe nasal congestion as a side effect which in turn is causing sleep apnea, sinus infections, etc.
After reading posts. I asked my Doc for gabapentin instead. She gave me 100’s and said to start at 100 and if I need to can go up to 300.
300 helped a tiny bit. My question is can I just jump up to 4,5 or 600 or should I increase slowly?
I’m also in 200mg Seraqol ER and reading that this can cause RLS, I am going to start taking it in the AM instead of PM. Any advice is welcome.
Thank you in advance

Polar Bear
Moderator
Posts: 8828
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: New here,

Post by Polar Bear »

I'm looking at your RLS dosage of 2mg. You are up at 8x your starting dose. The leaflet in the pack probably says that 4mg daily is ok but the RLS experts would say that 1mg should be the max for RLS. Have you read about augmentation. This is a common factor when taking Ropinerole. It's possible that because of having to increase your Ropinerole you may have augmented. In any case, Ropinerole is no longer considered a first line medication for RLS.
However, You asked your Doc for Gabapentin instead. Does this mean you are already off the Ropinerole, or taking it as well as the Gabapentin. With regard to increasing your Gabapentin I'd make a telephone call to your doc for confirmation on how large an increase you should try.

Seroquel is a drug that would be known to cause/aggravate RLS. It probably keeps a constant level in your system. I stand to be corrected but if it is indeed a negative issue for you, I don't think it matters whether you take in in the morning or evening.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

RLS113
Posts: 11
Joined: Fri Oct 14, 2022 9:13 pm
Location: New Hampshire

Re: New here,

Post by RLS113 »

Thank you for responding.
Correct, I am no longer taking Ropinerole. And yes. I read about augmentation on this site obviously after I increased the dosage.

So if Ropinerole is no longer considered the first line medication for RLS, then what is? Maybe I should be trying other steps first?
.
Today was the first day I took the Seraquol in the morning and about 1-2 hours after, I felt my legs begin. So there is definitely an association there. Unfortunately it took me forever to find the correct dosage of this mood stabilizer.
A different Dr prescribed it and I guess now I should discuss and alternative to that med as well.
I feel like I’m chasing my tail.

If there are other things I should try before Gabapentin where would I find out that information ?

Polar Bear
Moderator
Posts: 8828
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: New here,

Post by Polar Bear »

Many sufferers now start with gabapentin or pregabalin (a similar drug). Finding the correct dose to work for you.
If you need to take Seraquol then any additional symptoms caused need to be taken into consideration when prescribing the rls medication.
Have you had your blood ferritin serum checked. This is important as it should be up around 100 and not the 20 which can be considered normal. Not normally done in standard blood works. Many of us eventually use opioids to treat our symptoms but doctors can be reluctant to prescribe these and certainly not before trying the likes of gabapentin.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

RLS113
Posts: 11
Joined: Fri Oct 14, 2022 9:13 pm
Location: New Hampshire

Re: New here,

Post by RLS113 »

Ok, Sounds like I may be on the right track with the Gabapentin. I’ll work on tweaking the dose.
I will ask my PCP for that iron blood work. I see her in a couple of weeks.
I am trying to find an article or another write up/medical study or research paper (done by a medical professional or organization) that references the correct iron level (100, not 20) so I can show her. She is uneducated on RLS but is very willing to look at anything I provide her.
Until then, Do you have any other recommendations as far as OTC iron supplements?

Thank you again!

Rustsmith
Moderator
Posts: 6523
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: New here,

Post by Rustsmith »

For your near term oral iron questions, the normal recommendation is to take one 325mg iron sulfate pill along with vitamin C on an empty stomach. This may cause some stomach discomfort, in which case there are products with names like gentle iron. You just need to be sure that the product contains 65mg equivalents.

To educate your doctor, give her a copy of this publication. It was jointly written as a consensus document by many of the leading RLS experts. We usually suggest highlighting a section that is more important to you. https://www.mayoclinicproceedings.org/a ... 0/fulltext
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

RLS113
Posts: 11
Joined: Fri Oct 14, 2022 9:13 pm
Location: New Hampshire

Re: New here,

Post by RLS113 »

Thanks so much. I found that Mayo Clinic publication. Very interesting information! And yes, I did highlight it!

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