Effect of chemotherapy on RLS

[Anne_liz]

It might seem strange to be asking about chemotherapy, but a few years ago I had breast cancer and was given a course of chemotherapy as part of the treatment (successful as I am still here!). As soon as I started this my RLS stopped completely, and for over 5 months afterwards I was still clear. Then, after the 5 months, just when I had almost recovered my strength, the RLS started again as before.

What I am curious about is what it was about chemotherapy that caused this - I certainly would not recommend it as a treatment. One possibility is that it could have been the steroids, because they gave me a dose of dexamethasone with each cycle of treatment (6 cycles at 3 week intervals). This was given as an anti-emetic (Iwas still sick) and continued for 5 days in decreasing doses.

Is there anybody there who has had chemotherapy and found i any effect on RLS?

[Hidden]

I've never had chemotherapy, but strangely I've found my RLS is better when I have other health problems. When I had cancer surgery, my RLS virtually disappeared. Last year I had severe nerve pain my RLS was better.

I did however continue taking Pramipexole throughout and started on Gabapentin for the nerve pain.

Maybe it's just one takes your mind off the other. I can't see that there's any physiological reason for chemo relieving RLS.

I wouldn't recommend it

[Anne_liz in reply to Hidden]

I am sure it was not just taking my mind off it. I have had other serious conditions where it has not been stopped. (A sub arachnoid haemorrhage due to ruptured aneurysm for a start).

However in the past I found when I was unwell the rls seemed reduced. This happened on other occasions when I was in hospital. But I now realise this was because I was taking strong pain killers on these occasions. I found that either codeine or tramadol stops my rls completely. Have been taking low dose of codeine every night for almost 10 years now with complete success.

[Hidden in reply to Anne_liz]

There may be an adrenaline factor as well. Paradoxically I sometimes find symptoms less when my adrenaline levels are higher. But get a rebound when they lower again.

It would be interesting to see if there's some element of your chemo that might be a factor in your RLS. What exactly did you have?

[Anne_liz in reply to Hidden]

It was definitely the chemo that had this effect as the rls only stopped when I started that. However it had a fairly long term effect as I was clear of it for 5 months afterwards. This is why I thought it might have something to do with the dexamethasone as steroids do have a long term effect. They gave me a fairly high dose and continued for 5 days reducing the dose every time.

On the other hand it might simply be something to do with the general debilitating effects of chemo. I had very little strength by the end, less after each cycle. Then my strength only returned very slowly - it normally takes around 6 months. So that may be the reason - I did not have the energy to move my legs!

The other drugs were all cytotoxic ones - cyclophosphamide, epirubacin & fluoruoracil.

[Memmy in reply to Anne_liz]

Hi, Im pleased for you that taking codiene helps you. I alternate mirapex with one day codeine, in other words I take mirapexin for 5 days then one day of codeine and one day of tramadol. This seems to work as I am trying not to augment on mirapexin. However on my codeine days Im never sure how much to take. When you say a low dose how much is that. I take boots codeine and paracetamol but even. 2 tablets doesnt stop the horrible leg problem. How much do you take and does it stop the rls completely. Thanks

[Anne_liz in reply to Memmy]

I used to take 30 mg last thing in the evening, sometimes earlier if the rls started in the evening. That stopped it completely almost all the time. Recently I have reduced it to 15 mg and that works almost as well. I reduced because I started getting headaches quite often, which my dr thinks may be due to taking codeine continuously. These are much better since reducing the dose, but not gone completely. They are still better than rls every night.

[Memmy in reply to Anne_liz]

Thanks I shall increase my dose and take 2 tablets and see if that works

[Wonko_TheSane]

I didn't have chemo ever, luckily, but I have another not entirely unrelated observation: as soon as I get the flu bad enough to be running a fever, my RLS improves drastically. I've heard others report the same thing. There are clearly some things that change how our brains are (mis-) wired when major things are happening with our bodies. I wish there was more research on this.

[Hidden in reply to Wonko_TheSane]

I wonder if this is a common thing. When our bodies (and nervous system) are having to deal with major issues, some less vital processes might get shut down to save energy.

I've only ever had (real) flu once, it nearly killed me. I struggled to stay conscious and couldn't manage to even sit upright. I haven't really noticed if having a bad cold affects my RLS, possibly. I have noticed it's less when I am under stress, physical or emotional so that might be a factor - stress.

[rlstorture]

As a breast cancer (Stage 3) survivor, myself, I was curious to read your post. My mastectomy, chemo and radiation were Aug 2011 to July 2012 during which my Rheumatoid Arthritis got immensely better. I have no memory of the RLS being better. I will keep it in mind to see if anything pops back in my memory. It is likely that I wouldn't have noticed any changes as I was, at the time, on Requip which was successfully controlling this hateful, awful, torturous RLS. (Currently, on Mirapex 1mg - two at bedtime,half in AM, half in afternoon.) I will add additional posts if anything comes to mind. I am curious to know more on the RLS front as the Rheumatologist is going back to my chemo treatment to see if any of it might be an option to treat my, now, out of control RA. So exhausting!

[Hidden]

Strange that I recall making further replies to this, but they've apparently disappeared.

I did add the comment that I've read some claims that RLS is an autoimmune disease and some claims that it is due to inflammation. Inflammation is part of our immune response.

Dexamethasone will reduce inflammation and cytotoxic chemo reduces immunity.

This might explain its effect on your RLS.

[Wonko_TheSane in reply to Hidden]

Without having any real evidence, it would make sense to me that RLS, while it can have multiple reasons, could for many be an autoimmune issue. That would indeed make sense with the chemo observations. I'll keep that connection in my mind as i keep reading all the new studies as they come out. Thanks for bringing that aspect to my attention!

[TeriShelly]

I had chemotherapy for breast cancer last year. The chemo itself had no effect on my RLS - my RLS remained as bad as ever but thankfully controlled by Pramipexole. On the 3 days of steroids (day before, day of & day after chemo) the RLS was worse. And the time they gave me Metaclopramide for my stomach was the worst night of my life - to be dealing with all the chemo side effects and then to face a night of RLS which Pramipexole could not control was absolutely horrendous and I remember my husband just holding me as I cried and cried. And of course I was really annoyed with myself when I later checked Metaclopramide and realised its a no no for RLS sufferers. I should have checked before. I won't make that mistake again. So for me chemo (Cyclophosphamide & Docetaxol) & Herceptin did not have an effect but other things did.