RLS and CLL

[loflash]

In my earlier post, I asked for advice about coming off Mirapex, a drug prescribed for Restless Leg Syndrome. I am currently in a clinical trial for CLL, taking Ibrutinib and Obinutuzumab, and I am wondering if anyone else in this community shares my situation dealing with RLS (an incurable syndrome) and the drugs treat and mistreat it. I apologize for not putting my earlier request in context.

[Smith123456]

did they tell you to stop it?

[cllady01 Former Volunteer]

loflash, as you have asked "How to get off Mirapex" I found the following Mayo link that can be a guide for you to talk with your Dr. It would be best for you to get the guidance of your Dr. in withdrawing safely as the May article suggests.

Depending on your reasons for needing to come off and any time limits before beginning Ibru + Obinutuzumab for your CLL, or whatever the situation, the Dr. that prescribed Mirapex AND your CLL Dr. need to be consulted before you begin the effort.

I hope you will share what you find out from your Drs. and how the process will go. That can be valuable information for others who may now or in future have the same situation.

Best wishes lofash, for a safe experience.

mayoclinic.org/drugs-supple...

EDITED: I see by your other post, your Dr. has said to just stop taking the medication--not sure which Dr. that refers to, but I would, were I you, take a copy of Mayo's info to support my need for needing help to get off the medicine—and I would consult the CLL provider also, in regard to the side effects you are experiencing--as you state it is becoming more harmful than helpful.

[Shedman]

Do you have other symptoms.. say, the list of magnesium deficiency symptoms.. do any of those apply? Some people with RLS report relief to it, and to some muscle cramps, via supplementing with magnesium..

Do you take any supplements?

Do any include magnesium, if so, how much and of which magnesium compounds?

For instance, someone showed me that they were taking a supplement of magnesium oxide.. sadly, this is very very poorly absorbed (likely find it in laxative products for this reason..) .. so the amount and type really matter.

[UniversallyPersonal]

I started have it issues where restless legs kept me from sleeping well and by adding magnesium just before bedtime it has pretty much resolved the problem. I did not have magnesium deficiency but still had great help from the magnesium Supplement taken just before going to bed.

[LeoPa]

I had RLS 10 years ago. Neurologist prescribed magnesium. Taking it resolved the problem very quickly. I was taking the mg oxid form, not knowing chelated magnesium absorbs much better. Another factor was I'm sure high levels of stress at the time. Which I found natural remedies for. Completely changed the way I look at life and its problems.

[Eucalyptus22]

I too suffered restless leg syndrome and found it went away completely with a nightly magnesium.

[marcyh]

It's miserable, my sympathies. I didn't know at the time to take magnesium, but a friend gave me a tip that helped: putting my legs up against the wall for 10 minutes at bedtime. I did it while in bed and tried not to get up after that. Maybe in addition to magnesium?