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Leg aches

Hello all,

I started on Glivec in December and everything's been going well so far - first major test next week.

The only real side effects I've had are aches in my hips and legs; a dull ache in my upper legs/hip/knees mainly towards the evening and also a sharpish pain best described as feeling like I have a 'dodgy hip' upon some movements! I particularly notice it when doing things like getting on and off my bike and other actions which require a movement out of the normal leg 'swing' range.

Has anyone else had an effect like this? Any advice on returning to a full exercise programme (something I've not quite done yet, subsequent to starting G)? In general could I expect it to get better or worse in time?

Theses odd aches and pains are only sometimes mildly annoying, certainly not debilitating - I'm still eternally grateful for this drug and what it can do for us! And just finished reading Daniel Vasella's (Novartis) book on Glivec - a very worthwhile read indeed.

Cheers

Kenny

Diana G
Hi, Kenny,

I started Glivec same time as you and have had plenty of leg and foot cramps (indeed, an unexpected HAND variation this morning while opening a tin can)! The sensation usually provokes a roar of anguish followed by a rueful laugh and mild cursing. Huh! B----y Glivec! But usually only the dogs are around to snigger at me.

No leg ACHES as such, but reading the side-effects leaflet, they would seem to be par for the course.

Good luck - I hope things settle down soon - and don't fall off that bike while you're having a 'Glivec Moment'

Best wishes,

Diana

Some comfort for you I hope is that I too had dull leg aches when first taking Glivec some 3 years ago (been on 400mg ever since). As you say it was just a pest rather than anything worse but it has definitely improved over time as body acclimatised to Glivec and really does not bother me at all now - probably took 6mths to 1 year for aches to subside. Without meaning to generalise I think quite a few people would agree that these side effects seem to bed down with time, so here's hoping.....
All the best
Annie

Hi Kenny,
Our 13 year old started on Glivec last September and had lots of leg aches for several weeks, also some wrist pain - now definitely a thing of the past as he races about on his bike and plays footie with his mates! We were told that it was a side effect which was only likely to last a short while. Now he has some stomach cramps, but takes Omeprazole in the morning and that seems to sort it out. He takes Glivec in the evening with his meal. Hope this helps - I'm sure your aches will improve given a little time.
By the way, has anyone else been told not to drink coke an hour and a half either side of taking Glivec? Do you know if this applies to all fizzy drinks - apparently coke stops Glivec from being as effective....
Thanks, kestrel

hi kestral,
i have not heard of any contra-indication between cola and glivec, but it would be worth investigating the source of this idea as there are many people who drink cola/other fizzy drinks on a regular basis. if what you say is true this could be crucial for a lot of people.... where did you hear about this?

Kenny,
sorry to hear about the leg aches/cramps etc. i too had really annoying cramps for around 3 months after starting glivec (600mg)
.... heat and relaxation are the key factors here. i found those microwave heat packs very good for stopping the worst of cramps. however, this side effect did improve over time and as i said above, after 3 months the aches disappeared.
Sandy C ;o)

Hi Kestrel

Yep it's the caffeine in coke drinks that is better avoided. I have been advised to avoid anything containing caffeine close to the time of swallowing the little orange bomb. Apparently caffeine irritates the stomach, and for those who have diarrhea [sorry, never can spell that word!] when taking their glivec, caffeine will probably make it worse....lovely!! So I dont think it can apply to all fizzy drinks unless they contain caffeine, but it does mean coffee/tea/chocolate are probably best avoided if you get a bit runny soon after the big G.....

Grapefruit juice is a no-no at the same time as glivec though because it does interfere with the absorption of the drug - makes the levels of it in the blood much higher.

As for aching limbs, yes I too had this when first on the drug last autumn. Much better now but occasionally I do get cramp in my feet.

All the best,
Janet

Hi Kenny
Used to get cramps in fingers on occaissions wih Glivec, nothing regular, just happened whenever it felt like it. Dasatinib does not have this effect, has others, but not this one. The body will adjust, just give it a chance.
Keep smiling
Keith

I think our consultant said that coke interferes with the absorption of imatinib, but I will check next time we go to Hosp.
kestrel