Hi all,been on glivec 600mg now for 10 years and all is well,but getting alot of pain in hands ,my fingers are bending,my dr has made me an appointment for rhumatology as she thinks it may be the start of rhumatoid arthitis(excuse my spelling).has anyone else experienced this,do you think it could be linked to the cml? x
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arthritis
hii am now on 400mg of Nilotonib and have been to see rheumatologist and some of my fingers and elbow injected with steroids which helps for about 3 months
I am now on on salazapyrin which is another toxic medication and needs initially monthly blood tests so my GP is going to check every other month and the Hammersmith the months in between.
The blood tests for arthritis etc showed that it may well be from the TKi's.
Hope this helps.
can't tell if the medication works as in takes several months to take effect. Hope this helps a little
I have had arthritis for over 13 years I am not sure if they are linked but they have similarities namely
1 Arthritis is a autoimmune disease where the white cells attack the joints thinking that there is an infection
2 CML the body make immature white cells only this time the recipe is slightly wrong.
My CML started after the medication for arthritis was changed to sulphasalazine . My arthritic meds were subsequently stopped and my arthritis was left to its own destruction for three years.
I currently take imatinib 400 mg daily, and diclofenac when and as required (most days) last year I was also I have constant pain in most joints now and need anti-inflamatories to function. Last year I was given Rituximab to help stop the arthritis by killing the b- cells in my blood. This has helped but the damage to the joints Is permanent and is something I have to live with. Also I have had 19 steroid injections into my hands to keep mobility and stop the tendons sticking.
Hope this helps.
I have just come across an article which says glucosamine supplementation can help some people although I am not sure whether it makes much difference with longer term arthritis when there is a irreversible joint damage such as the kind that Stuart has suffered.
BTW Stuart, how is your CML behaving.... PCR results etc.?
Sandy
see article here:
Glucosamine plus walking improves arthritis symptoms
The results of a clinical trial published online on February 12, 2010 in the journal Arthritis Research & Therapy - http://arthritis-research.com/ - suggest that supplementing with glucosamine and engaging in a program of walking could improve pain, physical function and activity levels in adults with arthritis.
Dr Kristiann Heesch and colleagues at the University of Queensland in Australia randomized 36 men and women with mild to moderate hip or knee osteoarthritis to a 3 or 5 day per week walking program. Participants received 1500 milligrams glucosamine sulphate daily, 6 weeks prior to and during the 12-week walking program. With the aid of a pedometer, subjects were asked to increase their walking from 1500 to 3000 steps per day over the first 6 weeks in addition to any walking currently engaged in. They were then asked to increase their steps to 6000 per day over the subsequent 6 weeks. Physical activity levels and physical function were assessed and arthritis symptoms were rated upon enrollment and at 6, 12, 18 and 24 weeks.
After 6 weeks of glucosamine supplementation, physical activity, stiffness and function improved. Between the beginning of the walking program and the 24 week follow-up visit, significant improvements in physical activity and function as well as pain occurred, and there was a trend for improvement in stiffness. No significant differences were observed between participants who participated in the 3 and 5 day per week programs. "These findings are not surprising given that the three-day and five-day walking groups did not differ significantly in the mean number of days actually walked per week, the mean number of daily steps walked, nor their weekly minutes of physical activity," Dr Heesch noted. "They provide preliminary evidence that osteoarthritis sufferers can benefit from a combination of glucosamine sulphate and walking 3000 steps per day for exercise, in bouts of at least 1500 steps each, on at least three days per week".
http://www.lef.org/whatshot/2010_02.htm#Glucosamine-plus-walking-improve...
Hi sandy.
I hope you are well.
I have been tried glucosamine not really sure if it works or not might just be that I started taking it too late. Lol
Regarding the CML since I had the rituximab infusion my last 5 PCR / ABL results have come back a 0.000 PCRU whether this is connected or not remains to be seen, either way my consultant is very interested and has since asked if I would be prepared to participate in the STIM trial.
I have now thought the process through and think that at my next appointment in December I will commit to the trial the only way to know if things have changed for the better is to try it.
Speak soon
Stuart
Hi Stuart,
Good to hear that at least your CML is responding to therapy... to the point that you are obviously now eligible for the DESTINY trial (dose de-escalation and stopping trial) due to open in 2 weeks or so. The protocol is unique to the UK and I know a lot of patients who have stable low PCR results are hoping to give it a try.
Let us know how it goes when you see your doctor in December ...
Best....Sandy ;o)
Hi
As someone who has largely been side effect free I was wondering how your visit to the rheumatologist went and whether you have been given any indication if your arthritis is linked to TKIs? I ask because over the last few months I've had pain and stiffness in my hip - always after a day at work (where I sit at a desk...). It goes away at the weekend when I am much less sedentary.... And also more recently pain in my elbow - which feels more like the bone outside the joint rather than the joint itself though I know this can be deceptive. The elbow really is quite painful.
Am discussing with my GP but do wonder if it is somehow related to imatinib. I'm 46 so not unheard of to get arthritis at my age ordinarily but relatively unlikely I suppose.
Richard
Hi - since starting Dasatinib, I've been having problems with my thumb's basal joint - which is the main joint where it joins the wrist. It was at a point where everything I did all day long was centred around not letting it move due to the pain.
I don't yet know if it's due to RSI, arthritis or Rheumatism and/or any linkage with Dasatinib, but completely resting it for a long period (8-10 weeks) has been the only way to diminish the impact, which appears to be due to inflammation around the joint - If I protect it and don't let it become inflamed, the problem is far less and I can use it more.
I hope more joints don't go the same way!
Rod
I have been on Bosutinib for 4 months now and I am experiencing pain and stiffness at the base of my thumbs (both hands) and also at the base of my big toes,sometimes with a burning sensation. The pain comes and goes and, so far, I haven't taken anything for it. Ironically I find that walking boots are the most comfortable shoes, probably because they have a stiffer sole so the toes don't bend quite so much.
I think it must be linked to the TKI (I had back pain for 2-3 weeks a couple of months ago)- I Just hope it doesn't get any worse
Luisa
Just to clarify things - what Stuart and Steve are describing is rheumatoid arthritis (RA). This has an autoimmune element in it (though that isn't the whole story) and is treated with drugs like Salazopyrin (sulfasalazine) and methotrexate which have some fierce side-effects.
Glucosamine is used for osteoarthritis (OA), which is a very different disease - nothing like so aggressive as RA, mainly a wear-and-tear disease of older people. Pain at base of thumb is indicative of osteoarthritis by the way.