33 replies to this topic

[Melanie]

Just wondering why my cramps are always at night and seem to be getting worse.  Will keep me up at night and the actual cramp seems to be more intense and last longer.  In the beginning they came and were gone within minutes...lately they hang around for quite a while and can bring tears to my eyes. Why at night and hardly ever during the day? I take extra magnesium and drink plenty of liquids. Anyone else having this experience?

Melanie

[Marnie]

Hi, Melanie. . I'm wondering if you are on Gleevec?  I had horrible cramps in my hands and feet while on Gleevec.  They were a real problem when I was on my motorcycle.  Since I switched to Sprycel, I have had no issues with cramps, so I'm quite sure they were related to Gleevec. 

That said, I had my first episode of excrutiating foot cramp a week before I was diagnosed and began Gleevec.  So perhaps there is some connection to cml and cramping.

[GerryL]

Hi Melanie,

Most of mine happened in bed, you'd wake up and stretch your legs out and get a cramp either in the calves or thighs. I've wound up doing damage to my calves and thighs from it and still have issues with it now.

One thing I found that lessened it for me was Celery Seed, magnesium didn't work. Taking a fluid tablet also made them worse for me.

[Trey]

You are on Bosulif which is not supposed to be a big cramping drug, but it all depends on the individual.  TKIs cause cramps by upsetting the body's electrolyte balances, mainly potassium, magnesium, and calcium.  Different things help different people, as with Gerry.  The cramps have nothing to do with CML status.  The nighttime cramps are usually a result of taking the drug in the evening within a few hours of bedtime.  I do not take Gleevec at the same time each day, and when I take it within a few hours of bedtime I get painful cramps quite often.  For me they are the worst ongoing side effect after 8 years and reduced dosage.  Cramps seem to be worse from about 2 - 5 hours after taking the TKI drug. 

You say you drink plenty of liquids.  Oddly, less liquid may be better to reduce washing out electrolytes. 

[Melanie]

Interesting information about the electrolyte balance. Hadn't thought about that.  I also take extra calcium for my old bones. I take my dose of Bosulif at dinner, mainly to avoid the nausea side effect. It may be worth trying to take it at breakfast or lunch if there's a chance it could help with the cramps. Just a matter of coordinating all the different meds so they don't interfere with each other. I have a trial drug I take on an empty stomach and some of the vitamins can't be taken too close to the Bosulif or the Promacta. Can't remember which. Need to check that out.

Living in the desert, hydration is always a big deal, so I've always thought some of my cramps were from not being hydrated enough. I'll slow down on fluids too which is also an easy fix. Except for my wine...which doesn't really count as extra fluid. Thanks for the info!

GerryL - Celery seed? Do you just add it to your food or is there a supplement? I'll try that too!

Thanks and I'll post an update after a while to see if these remedies help in case others suffer from these horrible cramps.

Best to all, Melanie.

[GerryL]

Hi Melanie,

I used to buy it as a supplement in tablet form.

I also took my Gleevec in the morning, but cramps still hit me up to 22 hours later. They lessened when I went down to 300mg, but still hit on the odd occasion.

Following on from Trey's info what about something like a drink which has electrolytes in it? Maybe a small glass at night time.

[Melanie]

Thanks, I was thinking the same thing about the drink. I'm happy to try any of these simple to do solutions and anxious to see them work. I'll report back soon with any improvement.

[Taylor]

Pumping magnesium (I use pills or a drink mix called Natural Calm) really helps my cramping. I'm also on a potassium pill for the heart, which I think helps too.

[susanlathers]

I am on Bosutinib and have horrible, severe leg and foot cramping. Sends me flying out of bed.  It used to go away after I walked around a little but now it can go on for 3-4 hours.    I have tried most of the above and calcium.  Sometimes putting a heating pad on them as soon as they start will help. Blood test 4 weeks ago, everything was normal including electrolytes. 

    I  have a question for Trey...  I found some tablets at health food store that are made for foot and leg cramps, they dissolve under your tongue and work within a few minutes.  However, last night as I was looking at ingredients they said not for someone who cant take quinine.  The detailed pharmacology from Pfizer says do not take quinine as it increases Bosutinib levels in blood. Considering how well they work on the cramps is Pfizers warning serious enough to not take them? 

  I realize you do not give medical advice and may not be able to answer this question.  If so I,  can e-mail my Onc. next week and ask.

Wanting relief so bad

Susan

[Melanie]

Susan...just wondering when do you take your Bosulif?  Sounds like we suffer from the same issues and my labs are all normal concerning any of the results that might have to do with the cramping issues. Didn't know about the quinine warning. I use to drink tonic water with quinine all day long thinking it might help. It did not.

Trey, why do you take your Glevec at different times every day? Do you do that for a particular reason?

I'm on day two of switching to mornings in taking my Bosulif. Yesterday was awful...nausea all day and belching. Was finally able to calm down about 10 last night. Trying it again to day. So far so good, just a little nausea creeping up. Good news though...no cramps last night for the first time in months.  I did get down some vitamin water yesterday with extra electrolytes, so maybe that helped too. We'll see.

[susanlathers]

I started out taking Bosulif in the am and after 4 weeks of nausea all day I switched to dinner.  Now I just feel mildly nauseated and lousy from 8-11 when I go to bed.  Since I don't do much in the evenings it is more tolerable.  Most of the day I feel good and lots of energy.  I havn't tried water with electrolytes so will get some today.  I don't know what I would do if I have to go back to taking it in am.

Nice, but I'm sorry for you, to have someone who knows what Bosulif side effects are like.  Not that many take it.  Let me know if you find any more answers

[Trey]

Susan,

The pills have quinine, and taking quinine is generally OK.  Most of the warnings about increasing drug blood levels are overblown, so I personally do not worry about most of them.  For instance, if I want to eat grapefruit, I do it.  Quinine can help some people with the cramps, but it has not been shown to be very effective in a few small studies, however these people did not take TKI drugs, so that may be a difference.  It also has some risks (read below) including reduced platelets.  But tell us how they work for you after a few weeks.

http://www.consumerr...ended/index.htm

Mel,

I take my Gleevec at different times because I have become lax about the issue.  No real reason other than that.  If I skip breakfast I take it with another meal during the day, and it has become random which one I choose.

[Susan61]

HI:  I guess different things work for different people.  I have been on Gleevec for over 13 years, and I was still getting the leg and foot and hand cramps.  I was also on Nexium which depletes your Magnesium.  I started to take the Magnesium, and the cramping stopped.  Now I just got home from the hospital on Friday after being admitted last week for a blood clot in my leg.  I was not taking my Magnesium well in the hospital, and when I got home I had the leg cramps at night.  I am back on my Magnesium now, so I have to see how I do.

Susan

[Happycat]

Melanie,

I still get cramps with gleevec, but it comes and goes.  Bad some days, then I can go months without an issue, then wham, it hits again.  I do see it getting worse as the weather gets hotter.  I always figured that meant I needed to drink more. 

I can also say that decades ago, when I was living in the desert in AZ, I had problems with cramps for the first time in my life.  Again, it took it as a problem with hydration.  So I think it may not all be due to TKIs (or other drugs one may be on).  Sometimes there are other factors at play.

I do note, however, that the gleevec cramps tend to be worse and take a lot longer to go away. 

HTH,

Traci

[Pin]

Hi Susan, sorry to hear you were in hospital - was it a DVT? I didn't notice any difference with magnesium until I started taking a decent strength dose. Now I can't be without it.

[GerryL]

Hi Traci,

Definitely Gleevec related - I had less cramps when I reduced dosage and haven't had any since I stopped taking Gleevec.

[Melanie]

Just want to update. I think the cramps are definitely TKI related. Tried to take the Bosulif in am for 3 days and couldn't do it. Nausea after about 4-5 hours and then bad diarrhea and fatigue. Only way to relieve the nausea was to lay down, which I did most the weekend. Awful! Night cramps were less and tolerable, but for me, being incapacitated all day is worse. Can't believe all that is going on while I sleep, but sense it was better if I was laying down, I guess it's not as severe as I sleep. Regardless, I've gone back to evening dosage with dinner like you Susanlathers. Totally understand where you're coming from.  Last night, cramps were back but not as severe. Did drink some nitrate fortified water before bed though.

Pin - Susan61 - Taylor - What dosage of Magnesium do you take? When do you take it? I do take an extra 450mg dose with my vitamins, probably not enough?  Would be easy to take more. So sorry you were in the hospital Susan and hope the cramps aren't hampering your recovery and you get them back under control.

Susanlathers and Trey - The quinine pills from the health food store may be of value, because I did get some relief when I could drink enough tonic water during the day. I had to stop that though due to chronic low platelets and my drs didn't want me doing anything that might contribute to that. Susan, I'm curious if it's helping you though.

Feeling so much better today, so for now I would rather put up with the pain and lack of sleep then be totally out of it all day. Will increase my magnesium and continue the nitrate rich vitamin water.  If it's due to a nitrate imbalance, I bet the AZ heat, daily side effect of mild diarrhea, and trying to stay hydrated, as well as the TKI are all contributors. Hopefully I'll find the right balance and that will be the magic treatment!  Thanks for everyone's input! It helps so much.

[susanlathers]

I also want to thank everyone for the input, 8 yrs of encouragement and help.  Between this site and being able to e-mail my onc, who always responds same day, it has kept me from many needless Dr. apts.

These TKI side effects are, cause effect, very illusive little buggers. For some odd reason unknown to me I have only had 1 bad cramp in the last 2 nights and I'm taking nothing specifically for them.   I stopped health food leg cramp pill when I saw the warning about quinine.  They were also quite sedating.  I think they are a muscle relaxant of the natural variety.  I always question "natural remedies" of this sort, after all, pot and heroin started out "natural" also. Almost all of medicinals started out some where "natural".  My issue is, is it going to become habit forming.  I take enough meds with side effects. I don't want to worry about side effects of the "natural" ones. Having said all that I will probably keep some around incase I have a night like I did last week where they would not stop for 3 hrs.  I still have sore muscles where some of the more severe ones were, like from groin to knee.

Re:  the Bosulif and nausea.... I started Bos. Jan 1  this yr.  Miserable, lay around, can't do anything nausea until after 30 days when I switched to taking it with dinner.  that worked good until a week ago and now nausea is back all afternoon and evening until I go to bed.  Not as severe, just that "I just don't feel good, don't want to eat" feeling. I heard someone say once, about Bosulif, that he had to figure out what foods he was more nausea/diarrhea  sensitive to and avoid them.

Yes, finding the right balance does appear to be magic or good detective work.  Probably keeping a journal would help.  Counting on my memory for what I ate or did 2 days ago is not going to work.

  Anything else, one would give up and say, I'm not doing that to my body.  But, we don't have a choice, it is this or die.  I did get tired of the side effects last Sept and took a drug holiday for 3 mo.(with my onc approval).  My PCR went from .067 to 70%, much to my disappointment but it has also made me quit fantasizing about being TKI free.  So I will keep on trucking to make the best of what I have and be grateful there are solutions

   Thank you everyone for sharing what works for you.  We need each other.

[auntquack]

Hi Melanie

I'm not a regular here but every once in awhile I check in. I've been on Gleevec 400 for six years and I've always taken it at dinner time. I drink one bottle of G2, the low calorie Gatorade, daily on the advice of my onc. I make sure I drink at least 32 ounces of water a day. I started walking a couple miles a day again after a long, cold winter and I haven't had a really bad cramp in a few months. The one thing that I noticed about your post and which prompted me to reply is your mention of wine. I found that if I had a glass of wine in the evening I had unbearable cramps that night. Needless to say I haven't had wine in the evening in awhile. I find that I can have a glass in the afternoon and it doesn't bother me.  

[Pin]

Hi Melanie, I take

- 2 x Magnesium 150 mg (Magnesium citrate 927.64 mg) daily

- 2 x Calcium citrate 1190mg (equivalent Calcium 250mg) daily

I've found that not only does this help with cramping, but it also alleviates my physical fatigue significantly. If I forget either of these (particularly calcium), my muscles in my legs start feeling very heavy and I am more prone to muscle strains, cramps etc. That is my experience anyway. I've also been taking phosphate for a short time recently as I had very low blood levels (also had potassium in it) and that helped dramatically with heart flutters I was experiencing, I'm not sure whether it was the phosphate or the potassium that made the most difference, but no matter! I've just started to notice that I'm starting to experience the same muscle pains/problems that I had before I started on calcium, so I'm wondering if the balance is starting to swing the other way (apparently calcium and phosphate regulate each other), I'm due to stop the phosphate now, so we'll see what my next CBC says...

Cheers,

Pin.