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Gout!! OUCH!! Help/Advice Please?!

gout tasigna allopurinol

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#1 Lorsa


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Posted 07 March 2016 - 07:37 PM

Hello all, I am a long time lurker on this forum (almost 9 years!) and I've always been able find answers to my questions here on this board before I even asked them...until now.  So I'm coming out of lurkdom to ask for some advice/help from "the experts" here, i.e. the people who know what CML'ers are going through.  I can honestly say that when it comes to CML advice, I trust you guys and gals more than anyone else, except my oncologist/hematologist.

My quick history:
 -  diagnosed with CML almost 9 years ago, as a 46 yr old female
 - started on hydroxeurea for 2 weeks, then on Imatinib (Gleevec)  for 5 years, then changed to Nilotinib (Tasigna) because the Gleevec side effects were just too exhausting

 - reached MMR at 12 months, CMR at 18months, have been holding since.

Last fall (October 2015) I injured my left foot - I banged the big toe REAL hard and was black and blue and limping for a few weeks.  In January 2016 I noticed the big toe seemed a bit swollen but it wasn't really painful, so just took it easy for awhile and it seemed to improve.  In mid-February I started doing easy treadmill walking, about 30 minutes at a normal pace.  The morning after my 3rd walk I woke up with a very painful toe and foot which my GP has confirmed is gout (blood tests confirm high uric acid levels).  This makes sense, since gout tends to set in at the big toe joints, especially if they have had a trauma.

A review of my diet & lifestyle habits did not indicate anything that would put me at risk for gout, but I have learned that high uric acid levels leading to gout are a known issue with long-term TKI use.  So I took a 1 week break from Nilotinib and my gout did indeed subside.  As soon as I resumed taking nilotinib, the gout returned (in just 2 days! ouch!).

Here's the issue: My GP wanted to put me on NSAIDS and colchisine, but relented when I pointed out that these were not compatible with Nilotinib.  I did convince her to prescribe me allopurinol, which I will receive today.  The prescription is for 200 mg once per day.  I asked if I should restart the Nilotinib immediately, or wait a few days, and the GP's response was "do whatever your oncologist/hematologist says".  (I also asked about monitoring the Allopurinol dose because I have read that the protocol with TKI patients is to start with a small dose and increase it incrementally week by week, until an effective level is reached, but she wasn't very interested in hearing about that.)   I will of course discuss this with my oncologist/hematologist, but the problem is that he is out of town for the next 3 days.  I have contacted his office, but I don't expect a response until he returns.

So if anyone else has been in this boat with gout and a TKI, could you give me some advice about what your experiences were?  Would you advise that I start both Allopurinol and Nilotinib immediately, or should I wait until I have taken the Allopurinol for a few days before resuming Nilotinib?  And how quickly does the Allopurinol work?  (I'm due to leave on a 3 week long trip 2 weeks from now, and am not looking forward to having gout problems while I'm traveling.)

Any and all input is welcome, and thank you all so much for all the information you discuss here.  These boards have truly been a lifesaving resource for me these past years, and they will continue to be!

Lorr :)

#2 Buzzm1


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Posted 07 March 2016 - 08:39 PM

Lorsa, gout's a real bitch, my sympathy ... also have a once traumatized big toe, and have periodic arthritic soreness from time to time.


had a very painful bout with gout in that toe a few years ago, and stopped all foods known to contribute to the issue.


took two weeks to resolve the issue with the first week being the worst .. walking on my heel, grimacing with every step.


gout diet


with your being CMR, it's doubtful that a few more days without Nilotinib is going to effect your long-term outcome


edited to add: with your long-term CMR, have you given any thought to TKI cessation?

For the benefit of yourself and others please add your CML history into your Signature


02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive


2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17


At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  


In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  


longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.


Cumulative Gleevec dosage estimated at 830 grams


Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  


Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

#3 jmoorhou


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Posted 07 March 2016 - 10:37 PM



I  got gout in my ankle but then I realized it was the Lisopril I was taking which I'm hoping I have that name right...anyway it was a diuretic I was taking for high blood pressure.


I stopped taking it and the gout went away.


Are you taking anything resembling a diuretic by any chance...they tend to flush the body of minerals and good things I think.


My blood pressure wasn't that bad so I haven't taken anything like it since.

Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#4 Trey


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Posted 07 March 2016 - 11:07 PM

You can take NSAIDs, and also colchicine in lower dosage.  The interaction is that clearance from the body is slower, so it is like taking more drug.


Longer term you would want to discover why your uric acid levels are elevated.  After the initial mass killing of leukemic cells the CML does not result in elevated uric acid.  But once the toe has gout it is difficult to eliminate, so pain control is the main issue.


Allopurinol does not help reduce pain.  In fact, it may increase the pain in the short term if it is actually reducing the cause of the gout.

#5 hannibellemo


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Posted 12 March 2016 - 09:09 AM



Lisinopril by itself is not a diuretic, it is an ACE inhibitor used in the treatment of HBP. You may have been taking a combination pill of lisinopril and hydrochlorathorazide. The HCTZ is the diuretic component. It is not a particularly strong diuretic and is fairly mineral sparing.



"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#6 Rinrin


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Posted 16 March 2016 - 11:52 AM

I was diagnosed on 11/14.   Started on Sprycel 100 mg. then Sprycel 50 mg. Gleevec 200 mg. and am now on Sprycel 20 mg.   I was MMR in 7/15.   I have diabetes and received a kidney transplant in 7/10.  I take a lot of meds and one of them was allopurinol.   Before I was diagnosed with CML I was taking 100 mg of allopurinol daily and now take 100 mg twice a day.   

They never called it Gout but the elevated Uric Acid seems to be related to the transplanted kidney and after taking starting the TKI my Uric Acid level increased so they upped the allopurinol.  .   Knock on wood I have only had minor pain in my big toe but that was just a few times.   


I hope the allopurinol is helping you! 

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