Back in 1972 when I was still a trainee hematologist, my boss, Jeremy Lee Potter, told me that leg cramps were a feature of CLL. I couldn't find any data to establish this so I set about collecting my own. Sure enough, several of my patients complained about leg cramps, although lots of them denied ever having had a leg cramp. Some said that they had never had leg cramps before they had been diagnosed with CLL.
Of course, no study is complete without a control population, so I set about asking other people with hematological diseases of the same age, as well as patients admitted to hospital for routine surgery if they had leg cramps. Unfortunately, it soon transpired that lots of other people had leg cramps too, and I was never going to assemble a large enough population to establish whether or not there was a statistically significant difference in incidence.
I had some ideas about why patients had leg cramps, largely surrounding the enlarged spleen - patients with splenomegaly are known to get ischemic leg ulcers - but I couldn't make it stick.
I explored treatment too, including magnets under the mattress and soap on the sheets, but the one thing that always worked was quinine 200mg at night. I prescribed this for 30 years without mishap, but lately the pharmacologists have advised against it because of the rare occurrence of quinine induced immune thrombocytopenia. The reckon that leg cramps are not severe enough to warrant the tiny risk. I tend to ignore them.
I began having cramps in various parts of my body (not just my legs) about a year before I was diagnosed. It continued all through W&W but stopped after FCR. I also had a HUGE spleen that shrunk up after FCR.
ReplyDeleteLately, I have noticed a cramp now and then that worries me a little, but these are not nearly as bad as they were before.
Magnesium helps with the cramps. I had leg cramps long before I was diagnosed with CLL. Perhaps leg cramps means one will be doomed with CLL. Not.
ReplyDeleteMy mother and father had leg cramps. She never developed cancer.
The worst one I've had happened when I was a teenager.
Hi Terry, I was diagnosed with CLL at 40 in 2000 still W & W and no treatment so far however it is misbehaving at the moment.
ReplyDeleteI too suffer from very painful leg and feet ankle cramps.I have had them during the day but mostly they happen from early evening and then right through the night causing my feet to look deformed.Coupled with nights sweats ....not much sleep at all!
Lots of people have been put off quinine because of its reputation for causing thrombocytopenia. This is a very rare complication and gets better when the quinine is stopped.
ReplyDeleteDiagnosed with CLL two years ago and since then my lymph nodes have enlarged and some have been removed. Started leg cramps nealy 8 weeks ago and have had about 10 nights unbroken sleep with it since starting. Tried Quinine for 4 weeks and no better. Due to see Heamatologist next week so we'll see what he has to say, if anything!!
ReplyDeleteTry taking the quinine at dose of 200mg twice or three times a day to see if it works. Otherwise it may be a case of treating the CLL.
ReplyDeleteHi Terry
ReplyDeleteSince my last comment in April things have changed. Having seen my GP he suggested taking a Quinine during the day and one dose of Amitriptyline (50Mg) at night and that seemed to work. However, on my last visit to my Haematologist (last Wednesday)I was told that my Platelet count had dropped to 31. Just had bone marrow biop yesterday and are due to see the consultant next Wednesday (27th) for the results and the start of treatment. Interestingly, I asked the consultant last week was there any connection with night cramps and he said no and then dismissed it. Other markers on my blood sample showed possible infection of my liver and on examination he informed me that my spleen was enlarged.
Stop the quinine.
ReplyDeleteHi Terry
ReplyDeleteThanks for that. I havn't had a quinine tablet for a couple of weeks now just take the Amitriptyline. Started prednisolone this morning 50Mg once a day for the next two weeks. Your comments are always welcome.
Hi Terry
ReplyDeleteCramps stopped. Platelets now 108 + ITP. Thanks for your help
My boyfriend was diagnosed 1 yr ago.Lat month the platelets dropped to 8000. Was put on Dexamethasone/4 days on, 4 days off.That stuff is hard on the body.Also started Ritauxin. Platelets are back up and wbc;s are down. He also gets lots of leg cramps.Would like to know if there are any foods that would help with this problem.
ReplyDeleteLeg cramps are a difficul;t problem. There are may anecdotal reports on what may improve them but the only thing that works consistantly is quinine. Unfortunately it carries a small risk of inducing ITP (it goes away again if the quinine is stopped) and many medical authorities regard leg crams as too trivial a condition to risk ITP Many patients think that it is not a trivial problem and prefer to monitor their platelet counts while on quinine.
ReplyDeleteInteresting comments. Following on from my last comments my platelet count went from 108 to 166 (in 3 weeks) and then from 166 to 212 (in 4 weeks). Yesterday they were 232 (2 weeks). Now my Haematologist has said that because my platelets are not responding to Prednisolone quick enough once we stop the treatment there is a strong chance that they will drop back to where they were at the start of July!! In just under 12 weeks it's gone from 31 to 232 with no cramps. My fear is that once we do stop the prednisolone I'll go back to square one ... from your experience what do you think the chances are of that happening? Tomorrow I start 10mg a day for the next 3 weeks.
ReplyDelete