restless leg symptoms worsened by coumadin.

Has anyone had any experience with blood thinners, esp coumadin, worsening restless leg pain. I believe my symptoms are worsened by taking coumadin for atrial fibrillation and there is a procedure called the Watchman Procedure that will enable me to get off all blood thinners within 4-6 months. Am scheduled for this Jan 15, 2018 and am very excited. Thoughts, experiences anyone? Thanks, Irina1975 Jan 2,2018 2AM

[Joolsg]

I don’t have a any personal experience but there do seem to be anecdotal reports of RLS with warfarin (Coumadin).

It seems to be linked to anaemia, so maybe blood thinning meds deplete iron in some way.

I’m sorry I can’t be more helpful but maybe someone will be along later with more info.

Jools

[Hidden in reply to Joolsg]

Thanks, Joolsg. VERY helpful and logical. My ferritin levels are low and drifting lower. But because they are 'within normal limits' am having a hard time getting my Primary Care Doctor (PCP) to take them seriously. I read somewhere that people with rls do better with ferritin levels at the HIGHER end of normal. Looks like I have a small 'medical skirmish' coming my way. I have also read anecdotal info re coumadin causing problems with rls. Some doctors agree some say no. Don't want to be contraversial but I believe some opinions may be swayed by coumadin being sucha profitable drug here in the US. BTW I used to belong to this website under my other name-silverdolphin73- but left in August. Probably expressed too many opinions. This time around will just try to find info to help.

[Joolsg in reply to Hidden]

Your serum ferritin level needs to be 100 or above. Your GP will say it is normal if it’s above 12!!!

I think you should start on gentle iron ( ferrous bisglycinate ) but check first with pharmacist that it won’t cause the warfarin to be ineffective. Getting ferritin levels up helps enormously.

[Hidden in reply to Joolsg]

Hi jools, thanks for ferrous bisglycinate info. Do you have info on the best dose? Thanks

[Joolsg in reply to Hidden]

I take 28mg every other night. There is a theory that if you take iron every night, your brain blocks the uptake whereas if you take it every other night, the brain will allow it through.

However, it takes a long time to increase levels this way so ask for the exact serum ferritin level & ask your GP if he/she can prescribe a higher dose for you.

Good luck

[Hidden in reply to Joolsg]

Thanks jools. Will do. More reasons to be our own advocates.

[lauraflora in reply to Hidden]

You can get it on Amazon Uk. You don't have to get it as a prescription. I do not know anything about how it might or might not react with warfarin, but many of us have gotten Solaray or Solgar iron (ferritin) bisgylcinate from either a health food shop or Amazon. (I am in the US, but I checked Amazon UK.) Look it up and see. It is not expensive.

Sometimes you just have to go with your own instincts and knowledge, esp. if the doctors are not very well versed in RLS info. You can probably find info about iron vs warfarin as well. Sometimes a pharmacist can answer your questions, if you ask the right way (meaning so they don't defer you back to a doctor, but give you a straight answer.)

The reason for the bisglycinate form is that it is easily absorbed into one's system, non-constipating, easy on the stomach.

[Hidden in reply to lauraflora]

Thanks, I spoke with my surgeon about the ferrous bisglycinate and he will let me try after surg on the 15th. Yes, it can affect clotting time when taken with coumadin but it's manageable, He will work with me. I'm lucky because I test my clotting times myself at home every week. I call results intothe Coumadin clinic nurse and we adjust dosages weekly to keep them stable. So shouldn't be hard to coordinate iron with coumadin. Have my own testing machine and supplies and love being able to do this for myself.

[lauraflora in reply to Hidden]

Good for you!

[Hidden in reply to Joolsg]

Thanks again.I will take ir every other night. Here's some information I was told by my pharmacist. Purely anecdotal but worth mentioning. I'm not sure of the reason for this but I was told do not take iron with thyroid medicine (which I take early every morning on an empty stomacn. So I plan to take the iron late at night to keep the two meds as far apart as possible. Any more thoughts or info on this is appreciated. Thanks, irina1975

[Hidden in reply to Joolsg]

Hi Jools. Updats: am going to start the ferrous bisglycinate in a week or two after some surgery Jan 15th. I'm also eating calf liver at least once a week. This is HARD 'cause I can't stand the stuff. But ieat about 4 ox with a million onions. and I eat it quickly and pretend it's medicine. If it helps get my ferritin level up I'll do it.

[Joolsg in reply to Hidden]

Hi Irina

I take the ferrous bisglycinate last thing at night before sleep.

There are other ways to get iron if you hate liver. Try lean beef, kidney beans and dark green leafy vegetables.

You can also get ferrous bisglycinate in a patch from PatchMD in the USA.

Really hope you can get iron stores up.

Take care

Jools

[Hidden in reply to Joolsg]

Thanks Jools -really helpful info. I would LOVE to let go of the 'liver treatment'.Also I like the idea of a patch. Avoids the GI tract completely plus better absorption I would think,

[Joolsg in reply to Hidden]

patchmd.com/

I buy mine from this site & it takes about a week to arrive & post cost is low because the iron patches are very light in weight.

[Hidden in reply to Joolsg]

Hi Jools. Was just re-reading your reply from about a month ago re warfarin worsening rls. I wrote down your recommendation at the time re ferrous bisglycinate. I've since had the Watchman procedure Jan 15th and begun the countdown for getting off warfarin. My last dose will be March 6. (Think I'll swallow it with some champagne! LOL) My EP who did the surgery said I could start the iron supplement when completely off the coumadin . I also plan to load up on some good B vitamins to help my nervous system in general. I know coumadin/warfarin helps many people and it helped me for a while. But I believe even though it's been around for years there is still a lot we don't know about its long-term effects. Maybe too many fancier drugs getting the research money. I am very excited about almost being done with this drug. Just wanted to update and say thanks re the f. bisglycinate info. Also seeing my sleep doctor this Friday and am going to really push for some 'heavy duty' help raising my ferritin level. My last level in January was 48 down from 62 several months earlier. This may also have to wait til after March 6 but I'm ok if that's the case. Take care. Burma (irina1975) PS I guess it's not hard to figure out my legs are hurting which is why I'm up writing posts at 5 AM.

[Joolsg in reply to Hidden]

I really hope you manage to get your ferritin levels up. 48 is very low for RLS. You should see a great improvement as your levels rise towards 100.

good luck

Jools

[Hidden in reply to Joolsg]

Thanks Jools. Raising ferritin is Friday's big goal. Hope it goes smooth and doesn't turn into a 'medical skirmish'. I think it will be fine. I'm actually seeing the sleep doctor's new nurse practitioner. I haven't met him yet-he just started in Jan. I actually like dealing with nurse practitioners. In my experience, they are often better listeners than the docs and don't seem to need to 'defend their position' as diligently. Also, NP's have a lot of leeway before deferring to the doctor-something the nurses in offices don't often have. It's also the same if the doc has a PA (Physician's Assistant) Usually easier to deal with. Often, in my experience, nurses have the knowledge and judgment to make decisions butmany times they are not allowed to. Depends on the specific doctor. Take care. If I can get some IV iron and not have to eat liver I will be a very happy girl! LOL. Take care. Burma (irina1975)

[Hidden in reply to Hidden]

Hi correction re my previous name. I put silverdolphin but that was my email address. My original user name was burmag. Current one is irina1975

[Gmc54]

Yes, definitely. I started taking warfarin (coumadin) in 2009 for Atrial Fibrillation, and my rls symptoms worsened quite significantly immediately after starting this drug, so it had nothing to do with blood loss, at least not in my case. The trouble is without the warfarin I stand a very high chance of a major stroke, so continue with it. I find that taking one tramadol before bed and two co-codamol during the evening helps me.

[Hidden in reply to Gmc54]

Thanks Gmc54I have long suspected coumadin is a culprit for many side effects the medical profession doesn't give credence to. I'm a retired nurse and thru the internet try to keep up any way I can. I also take it for a-fib and in the beginning had many problems with various rate and rhythm control drugs. Since retiring-and even before- I've been losing faith in so many new 'miracle drugs' and now do as much as I can without them. In 2016 I opted for a pacemaker insertion and AV node ablation to be able to get off all cardiac drugs. Their side effects for me were hard to live with. The only one I'm left with is coumadin. I chose this particular blood thinner so I could do my own INR's at home weekly. But I want OFF! So I am scheduled for a Watchman Procedure Jan 15, 2018 and can't wait. BTW, since having the ablation and getting the pacemaker my a-fib is much easier to live with. Would have done it sooner if I knew how much better I would feel.Hearing your experience has reinforced my decision to have the surgery in 2 weeks, I have had low ferritin levels which are drifting down; believe coumadin is behind this too. Want to start the ferrous bisglycinate but have to wait til after surgery. Which is fine. If you're interested google Watchman Procedure and see what you think. Thanks again and will keep my progress posted. PS. I was a surgical nurse and surgery scares me much less than some if the drugs out there!