I have developed an incredibly painful big toe which is slightly swollen. It is isn't red or hot, so I don't think there is an infected joint. I am suspecting gout but I do not drink or eat any of the foods on the list that cause high uric acid levels. I have never had gout before so this is just google diagnosis.
I am on Acalabrutinib (approx 4 years) and am wondering if there is a relationship between the drug and this gout episode.
Does anyone have any experience or wisdom you can share?
Thanks
Kate
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I believe there were discussions about the release of uric acid as a result of treatment. Gout certainly does like to form in that big toe knuckle, but once properly inflamed it has always gotten red, and hot. The weight of a bed sheet is not an option for me.
Of course the joints are not the only place they gather, internal organs can become affected. Since, you are on treatment, I get in touch with your treatment team and get the proper test and get a med to flush it our of you system.
Just to agree that Acalabrutinib can increase the levels of uric acid. I think it may be a by product of the dying white cells. When I started treatment I also took Allopurinol, which is an anti gout (read uric acid) medicine, for the first month. After I stopped my uric acid levels shot up again and I restarted the drug. Another side effect (for me) after stopping Allopurinol was swollen ankles and feet. I have still not shaken that off.
Thanks for these responses. I shall contact my team in the morning. I just hope they can give me something without having to go to the hospital. Really trying to avoid covid.
I don't take any meds other than Acalabrutinib and my diet is mostly plant based so not the usual profile for gout. I suspect it is an Acalabrutinib effect sadly. Think I'm beginning to detect a few side effects after 4 years.
If you consume lots of fructose, you are in danger of developing gout. Fruits and fruit juices are the worst culprits, only surpassed by processed junk.. Anything sweet really. It's not the purines. I live almost exclusively on meat and I have no gout. I had it in the past. Back when I was eating and drinking too much processed crap, sweetened by HFCS.
Please don’t assume that problems are down to poor diet and junk food. I have read a number of Kate’s posts over the last few years and I know that’s not the case. If you read the Mayo Clinic post about foods with high uric acid they disagree with your high meat and fat diet.
No assumptions. I'm talking from experience The Mayo clinic is wrong. I've been fed the same wrong advice for 20+ years while I had to take allopurinol. My GP probably got her advice from the likes of the Mayo Clinic. Till I fixed the problem myself. I haven't taken it for 12 years now. Can you explain how that's possible? Bottom line is, if it's not caused by drugs, it's caused by high fructose content foods. Many of which are considered healthy. Except they are not..
You might simply have an ingrowing toenail nail. I get symptoms like that from time to time. Let your nail grow a bit longer so you can pull it away from the skin a little. It can sometimes lead to a painful infection.
If it is any help, my partner had high uric acid and swollen, painful toes. He cured it by drinking celery seed tea, just one cup a day. This sounds silly but it was very effective and his GP was amazed. He still drinks the tea and also one cup of nettle tea a day, and has had no more problems with swollen toes. His uric acid levels are now normal. Maybe you could research this yourself and ask your doctor about it?
I found your original post about the celery seed tea yesterday. I had some seeds in my cupboard so have started drinking it. Its very pleasant so I'll add it to my 50 plant based foods that I consume each week. Thank you.Kate
Allopurinol is an effective drug for gout and very safe to take long term, when I started acalabrutinib I was already taking it having suffered severe gout in both feet and knees many years ago, but since been on allopurinol have never had it again ( thank god)
Please get it checked out. my FIL left his for a week and it became infected. He ended up in hospital for over a month on IV antibiotics which then caused c-diff. I won't go into the rest just see please get it checked out asap. xxx
Thanks for that push. I have a video call with the duty doctor later this morning. To be honest, the worry about it being infected is my biggest fear particularly being so immune compromised. Then ending up in an NHS bed surrounded by covid!
Kate do you have a supply of ‘ just in case ‘ antibiotics. Always handy. I heard a Professor years ago at a CLL meeting saying to keep a prescription of Azithromyacin just in case.
I've been on Imbruvica for 61/2 yrs. It's caused med induced gout. I take 300 mg of Allopurinol a day. Mine could pop up on any bone area. Very painful. I'd call your doctor. Cindi
Hi Kate, I’m not sure if this has been carried out but a serum urate blood test needs to be carried out to assist in diagnosing gout especially as your symptoms and risk factors don’t sound typical. Checking out your ESR and CRP levels would help too to assess levels of possible inflammation.
Both my husband and adult son suffer with gout despite a healthy lifestyle and appear to have a genetic tendency to it. We’ve had our son to urgent care twice recently for a horrendous flare up where he became unable to put his foot to the ground. They are both on long term Allopurinol.
I know from observation that both sugar and a high red meat diet trigger gouty flare ups in our son. Add beer to the mix and the damage is done. However, these factors don’t seem to relate to you. You don’t appear to have either a high fructose or high red meat diet so are obviously watching your purine intake. Also you’re not seemingly overweight.
I have a history of joint problems on Ibrutinb so the extent that I had to cease them due to arthralgia and myalgia. BTK’s may be implicated but having only one toe affected seems strange. Hope your doctors can find the cause for you.
Thanks for all your helpful advice and I thought I'd share with you the outcome of today as I have certainly learnt lots. I have had a video consultation with my GP and a conversation with my haematology team leader and a conversation with a GP friend this morning. Probably the 3 best people you could speak to in this situation. This is the outcome:
1. Gout is a definite possibility although we can't rule out an infection in the joint as half my foot is swollen and red. The dying off of cells can raise uric acid levels. I could have had a blood test but to honest hopping on one foot to get there is not my idea of fun.
2. Colchicine has been prescribed but that is contra indicated with Acalabrutinib so I'm now off Acalabrutinib for a week. This also means that I can now take Ibuprofen for the pain and inflammation.
3. If it is an infection I am to watch out for redness and heat and tracking up my leg. A raised temperature as you get older isn't always the best indicator. If this happens I am to ring both my GP and the haematology team asap and antibiotics will be prescribed.
4. When I go back on Acalabrutinib and if it happens again then we take preventative action. Either reduce my Acalabrutinib dosage or low dose Allopurinol. Naturally, they are not keen on the former.
5. I am going to drink a cup of celery seed tea each day
Today has reminded me of how blessed we are with our NHS. When you need help they are there for us - no ifs, no buts!
So agree about the NHS Kate, and good you were able to speak to so many people. Hope the Colchicine works ( off to Google a new antibiotic ) and do either take a picture of the redness or mark with a felt tip pen.
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