Personal Update

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.
TimG
Posts: 72
Joined: Wed Nov 23, 2011 2:26 pm

Personal Update

Postby TimG » Fri Sep 28, 2018 3:53 am

I've been taking 0.125 mg of pramipexole for restless legs for about 7 years. I take it intermittently as needed to control symptoms, but not on a daily basis. I have not experienced augmentation and still obtain relief with the same dose as I started with.

Ferritin level is at its highest level- 98 I take an 18 mg daily iron supplement.

I used to be a regular, every-two-months blood donor, but in the past seven years I have limited donations to 2 or 3 a year. This last year I have not donated due to an issue that made me ineligible for a year.

I exercise regularly, including stationary biking, which seems to help in subtle ways to reduce restless legs.

I'm in good health, except for the normal changes that occur with aging (I'll be 70 next month)

ViewsAskew
Moderator
Posts: 15345
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Personal Update

Postby ViewsAskew » Fri Sep 28, 2018 5:52 am

Glad to hear things are going well for you. Taking the pramipexole as you are likely will allow you to take it for many more years without issue.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

TimG
Posts: 72
Joined: Wed Nov 23, 2011 2:26 pm

Re: Personal Update

Postby TimG » Sat Sep 29, 2018 1:06 am

Thanks for your response, Ann. I hope you are right about the pramipexole

legsbestill
Posts: 482
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Personal Update

Postby legsbestill » Sun Sep 30, 2018 8:01 am

It’s great to read of people who manage to control the dopamine agonist rather than it controlling them. You give me hope that I may manage to keep a low dose of pramipexole as part of my armory for some time to come. Thank you for posting.

badnights
Moderator
Posts: 4956
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Personal Update

Postby badnights » Tue Oct 02, 2018 2:24 am

TimG - good to hear from you again. It's wonderful that you're doing so well.
Don't you think you should stay away from blood donation? It's known to make WED/RLS worse, and you now have some evidence that it has been making yours worse: the fact that your ferritin is higher than it has ever been after a year of not donating. 98 is quite possibly not high enough for you. If you could get it higher, you might eliminate the need for pramipexole - and the associated dangers - altogether.
Anyway, I'm happy that you are managing so well. It's so nice to hear stories that give us hope.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

TimG
Posts: 72
Joined: Wed Nov 23, 2011 2:26 pm

Re: Personal Update

Postby TimG » Thu Oct 04, 2018 7:22 am

Beth--Thanks for your reply and helpful suggestions. Yes, you are right that I should give up blood donation, based on my experience of a year without doing so. And thanks for your advice about further increasing ferritin to eliminate the need for pramipexole.


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