Hi all,
my husband has been recently diagnosed of CML. He is 34. After two weeks on Gleevec, he has started to feel bone pain, mainly in the left leg. I was wondering if taking ibuprofen or any other antiinflammatory drug will be enough.
Thanks.
Carmen
Hi Carmen,
My 11 year old son Jack has been taking Ibuprofen and it has worked well for him, though over the last week we have gone up from one dose a day post Glivec administration to the maximum 3 doses a day. If it continues to build up (hopefully not) I will give him Paracetamol and Codeine which has worked for some good people on here and the pharmacist says it is permittable.
I am just hoping it will begin to fade soon as it has for other people.
Jack has only been on the Glivac for 8 weeks, but it breaks my heart to see him in pain. Especially as the CML was only found after routine bloods after a bone fracture an he wasn't at all ill.
Best wishes, Trish
Ibuprofen worked well for me. During my early days on Imatinib/Gleevec it worked much better than paracetemol for me.
After I guess 4-5 weeks I was over the worst of it and only very rarely have bone pains now after 4 months on Imatinib/Gleevec
I notice that Paracetamol has been referred to as being used for bone pain resulting from Glivec use.
One word of caution - it's ok to use occasionally, but avoid using regularly up to the maximum dose.
This is because of the potential effect on the liver which both Glivec and full dose Paracetamol can have.
Ibuprofen is also ok, but watch for side effects - it's generally safe enough for most people, has an irritating effect on the lining of the stomach - so best after food.
Also it SHOULD be avoided in asthmatics or anyone else who has a reaction to medication such as Aspirin.There are a few other reasons that Ibuprofen should be avoided - the information sheet provided with the medication will give more details.
Hope this is of help
Paul
All, this is my first posting, so I hope I don’t sound like a crank by the time you have read this. I am coming up to a year on Glivec, taken daily and injection of Interferon taken weekly – I am on the SPIRIT Trial. These aside, I have to confess I hate taking tablets and have avoided pain killers and the like out of my own personal choice.
I get random leg pains, I am not sure if I should be calling them cramps or bone pains - but they are differant than anything I have previously experianced and seam to fade, If I try and relax and not get wound up about it. Does this make sense?
Anyway if I have not had plenty of water, over a couple of days not just one day in isolation, sort of common sense! they tend to be worse. Also I tend to find I get more muscle pains if I have not had a banana a day! – part of my 5 Fruits!! (I take a multi-vitimin suppliment every other day as well)
In addition I keeping an eye on my coffee consumption which used to be positively unhealthy in its own right but is now circa 4 cups a day.
All in all, it seams to work for me and I would like to know other peoples views.
For anyone suffering with bone pain. I had it real bad in the beginning. It would go into my groin area. It still comes and goes, but its not that bad anymore. I would get spasms in my feet that was very painful, and that finally stopped.
Its harder on some than others. I am also diabetic, and due to kidney problems I cannot take any Ibuprofen. I was told not to take Tylenol at all with Gleevec.
Hi Trish,
I have been on Glivec for approaching three months. I found that 30/600 co-codamol (Solpadol) worked well with leg pains. I also had a DVT, have bursitis and a hernia, all on the same side, so that doesn't help! However, the lower leg pains, at least, are clearly due to the Glivec.
A word of warning. Codeine is an opiate and can produce dependancy at that strength. After three months on them, I have reduced them over a two week period. I am now suffering withdrawal symptoms. I feel continuously a few degrees under, have unpleasant restlessness, particularly at night, don't sleep much and visit the toilet every one to two hours.
My doc tells me that the time to get over this varies ("how long is a piece of string") but I have seen reports ranging from a week to five months. Knowing what I know now, I would be reluctant to take co-codamol other than for short, isolated use.
John
Seems like the potassium in your banana helps. You could try also a good calcium/magnesium supplement.
You could try your multivit every day. Again people react differently to various methods and you have to find what works for you. For example I found that eating carbohydrates before taking Glivec was easier on the digestion and I had no nausea.
How are you coping on SPIRIT ? How are your counts coping with Glivec and IFN ? PCR ?
Best wishes
Elizabeth
ps. welcome to CML Support as it is your first post !
Elizabeth,
SPIRIT is going fine, a bit of a roller coaster at the begining of the year as my whole system settled to the dual medication. I tend to fluctuate into Grade I bordering Grade II toxicity. My PCR is coming down, this is going to sound criminal, but not sure of the last figure.
I hope to keep postin from now on..
Andrew
