This topic contains 21 replies, has 6 voices, and was last updated by Toni Lee 8 months, 3 weeks ago.
January 16, 2018 at 10:08 pm #6337
mickyParticipantŦallars: Ŧ 1.04
I’ve been on Febuxostat / Uloric 80mg for about 6 months now (was on Allopurinol 300mg but was getting some side effects such as achey, tired legs) and have been experiencing back pain on the right side under the ribs. It feels muscular but it coincides with when I started on Febuxostat and also got better when I experimented with cut down the dose over the Christmas period, it is also never there when I wake up and am lying down. I was wondering if anyone else had come across this? All blood tests for liver, kidneys have come back fine and uric acid levels are down to a normal level – so everything good on paper apart from this strange back pain. It is not as bad as the Allopurinol side-effects so I would like to continue on the Febuxostat so long that it is not doing any damage!
Any suggestions appreciated, I have gone to the doc but they don’t seem to know and are just checking my blood every 3 months. Thanks!
January 17, 2018 at 1:05 am #6338
This is EXACTLY what I am experiencing but on the lower ‘left’ last rib or so. I noticed the pain when I went up from 30mgs to 40mgs (started Febuxostat mid November and have been going up very slowly) and went to see the doctor about it. My heamatologst did an abdominal scan and according to the radiographer she didn’t really find anything however I am still waiting for the formal report as sometimes the radiographers don’t like to give results in their entirety directly to patients.
Whilst waiting for the above results I went to see my GP about this and she explained that this is a side effect of Febuxostat (along with joint pains and muscle pains) and I can either a) try going back down to 20mgs to see if it goes or b) I can ride it out and just keep an eye out with regular blood tests. She mentioned that with time the side effects should ‘reduce or go away’.
I did a blood test yesterday and am waiting for the results. Based on these results I’ll be in a better position to decide what to do next (push for scans, attempt dose reductions, etc.).
I too have been worried if this is doing damage.
How long have you had the pain for and at what dose did it start/reduce?
January 17, 2018 at 3:33 am #6339
I’m glad you and DQ have found each other because my febuxostat side effects have been a bit different (for instance I also had pain lying down). In my case, the side effects at 40mg were unacceptable but are much reduced at the lower doses I’ve tried.
Over time, I did notice the side effects getting milder but the progress seems very slow.
If you’re worried about damage, I would encourage you to take a close look at your “fine” tests results if you haven’t already to see if there are signs of mild stress in there. Doctors sometimes do not look beyond arbitrary thresholds for “normal” or “acceptable”.
If you suspect your pain might be related to digestion, maybe dietary tweaks could help. There are also products which make trasit easier.
In case you weren’t aware, you should know 40mg febuxostat is in theory already stronger than 300mg allpurinol. 80mg is a very strong dose. Some people actually need that much but most people don’t.
Your uric acid blood tests are the main guide to how strong a dose you need. Your results being “normal” is irrevelant and you need to look at the numbers.
January 18, 2018 at 12:56 am #6347
I got my blood test results back today and most liver and kidney markers are near enough the results I got on 30mgs, 20mgs and whilst not taking the drug. Urine results also came back clear. Going by those specific figures and results it seems that this could just be a side effect that ‘may’ eventually go or reduce over time. Or it may be just something I will have to live with if I want to remain on this dose. Digestion wise, I do get the occasional delay but I can’t be sure that has anything to do with all of this, well at least I hope not.
Whilst we are talking about UA levels, my UA levels came back still surprisingly high after increasing from 30mgs to 40mgs. My results on 30mgs were 491 ummol and the increase to 40mgs only took it down to 487 ummol! Only 4 ummol difference?
I am assuming this could be because old crystals are dissolving and keeping the levels high? I cant think of anything else apart from trying to increase the dose and to see what happens. My results on 300mgs of Allopurinol was around 350ummol. What are your thoughts on this @nobody?
January 18, 2018 at 7:18 am #6349
Like I said, there isn’t much information in the difference between two tests. The thing is, it’s not just the latest difference which is discouraging: 491 wasn’t much lower than the previous result as well.
My lowest SUA test result was on 40mg, and the difference with lower doses wasn’t subtle. Neither did I need months on the dose to get there. It could have been an anomaly, but it’d be an anomaly which didn’t reoccur since (and I’ve gotten quite a few tests).
Studies also show the effect increasing with the dose, though there are diminishing returns. But your latest result on 20mg was also higher than could have been expected based on the effect of that dose on the average study subject.
Hitting a wall around the level at which deposits start dissolving could in principle be explained by crystals accumulated since your discontinued allopurinol. But how much of that stuff could you possibly have in your system? You didn’t quit allo that long ago.
Have you ever done an UA excretion test? I’ve been assuming your blood condition caused an overproduction of UA but now I wonder…
I guess febuxostat could also not be working well on you for some reason.
There still is hope that your results will eventually drop, whether or not you increase the dose.
You could try increasing the dose but don’t assume that there’s something magical about that dose if you finally see a drop in your tests results. It could be that what you had needed to make your SUA drop faster is a drug that helps with excretion (though being patient may be the safest course, kidney-wise). You’ll be able to test that theory by dropping your dose back to 40mg and see if your SUA shoots back up (my guess: it wouldn’t).
In answer to your other post, all my test results on 20mg have been under 300 so your question about 350 is moot. I’ve not yet been willing to risk taking less than a quarter-pill.
Cutting these pills is hard enough that I’m not confident each fragment would contain at least 10mg if I tried to cut the pill into sixth equal parts. And the dividing line at the middle of the pill would make it difficult to cut the pills in five equal parts with the tool I’ve been using so far. How did you achieve 30mg doses by the way?
January 19, 2018 at 3:51 pm #6351
Exactly. the slight drop does make me wonder if this is the absolute maximum I am going to get out of this drug. As you say however coming from just under +/-608ummol to 515ummol on just 20mgs is shocking. I was under the impression another 20mgs would suffice and close this subject for me once and for all.
The crystals dissolving scenario may just be my wishful thinking side as from what I understand nothing really begins to dissolve until you get to around 350ummol which I very much doubt occurred in the 2 weeks on 20mgs + 2 weeks on 30mgs + 2 weeks on 40mgs. I quit Allopurinol 1st of June 2016 but was on it for around 6 months with the last figure being around 280ummol. That was when I had the worst attack. How much can I have possibly accumulated from June till today to keep those levels high on whilst dissolving takes place as you say!
What I’ll do is give it another 2 weeks and check my levels at the end of the month. If I see no improvement then I will definitely need to start looking into other options (dropping, increasing, maybe even alternating). Kidney wise I have asked the doctors on numerous occasions to give me the 24 hour test but they just keep fobbing me off and saying ‘treatment options wont change even if you don’t excrete as much UA – the path of treatment will still remain the same”. They’re answers would make you think they are just being ignorant or are to lazy to organise the damming test!
I’m not too sure how to proceed to be honest.
As bizarre as it sounds for getting to 30mgs I would simply cut the pill where the the end of the number 8 is etched and the where the 0 starts on the pill and throw away the part in the middle.
Something like this: (8||0)
| = cut lines.
(Out of curiosity, why did you even try 40mgs if you were able to achieve 300ummol on around +/-20mgs?)
January 19, 2018 at 6:48 pm #6352
No, UA crystals can dissolve way before 350. It may take that much (or even less) to dissolve the crystals in the colder part of the body but you probably have crystals elsewhere.
The saturation concentration at body temperature is supposed to be around 405 but some studies come up with higher values depending on the assumptions made and of course supersaturation is a thing (else people wouldn’t test much higher). Your SUA is going to vary all the time anyway, as will the other factors affecting crystallization and dissolution. And once dissolved, the stuff won’t re-crystalize anywhere as fast.
When I had an average SUA substantially lower than your current test results, I still got the odd result around 475, for instance during an attack. But, outside of a post-ULT rebound, I never got the higher numbers I used to get when I ate meat and drank alcohol… make of that what you will but my conclusion was that crystal dissolution could raise my SUA about as high as your latest test results but no higher.
The main reason I tried to stick with 40mgs in spite of the side effects is that doctors can pretty stupid when profiteers want them that way. Mind you, concerns about these (in hindsight easily avoidable) side effects is the reason I’ve had untreated hyperuricemia for so long in the first place…
January 21, 2018 at 1:49 pm #6357
After reading your post I have to say you have given me some relief (and hope).
I mean now knowing crystals could be dissolving at 487 ummol has somewhat given me a little more faith in this whole ordeal. When I saw those last two results and associated them with the standard 350ummol I just lost all hope. Thank You for reassuring me even if you were just stating facts.
My next blood test is due on the 31st January with my rheumatologist appointment a few days after and I cannot explain just how badly I want these numbers to reduce before I see him. I’m also really going to push for the 24 UA excretion test.
I must confess however since I started ULT with Febuxostat I have been consuming more meat and more fish and much more spinach. Maybe these could have impacted the immediate results. For example having a blood test a day or two after eating these foods. Would it be worthwhile cutting down on these foods a few days before having my next blood test to get an idea if there was a direct influence?
Ignore the spinach bit (vegetable purine, etc).
January 21, 2018 at 4:18 pm #6359
I’ve never seen Keith explain why “vegetable purine” would have a different effect from “animal purine”.
So I wouldn’t ignore spinach… except that the febuxostat you’re taking has got to minimize the effect of the purines you’re eating. I don’t know how much difference food would make in your situation. It’s easy enough to temporarily replace meat and fish with dairy and spinach with harmless veggies such as zucchini even if it wouldn’t do much good.
Consuming largish amounts of skimmed milk seems to help lower uric acid beyond the super-low purine content. Alkalizing your urine by eating lots of veggies containing magnesium, calcium and potassium might help with the amount you’re excreting as well.
I assume you’re already avoiding sugar and especially alcohol.
Your SUA on 20mg was suprisingly high already.
I don’t know what’s going on in your system but as long as your liver and hemo are OK and you’re not experiencing horrible side effects, you can keep upping the dose and hope for a breakthrough. Maybe your current dose would be sufficient in the long run but we don’t know that and, assuming that febuxostat is working as it’s supposed to, higher doses will speed up the cleanup process.
At some point, your doctor will have to consider a drug combination to help with excretion. It’s in the guidelines. If your doctor won’t listen to reason, maybe try another. But it’s a bit early for that. As long as your febuxostat dose can safely be increased, sticking to a single drug may be for the best.
Increasing the dose slowly is also for the best I think. You don’t want to hemo to plummet and be unsure whether a smaller dose would be just as bad. If there’s a threshold at which febuxostat starts dragging your hemo down, you should spot it by taking your time.
January 24, 2018 at 10:26 pm #6417
I’ve cut down on spinach a lot recently. I’m going to give this little diet thing a trial and see how things go for the next 8 days (until next test). Luckily milk goes well with me and I drink plenty of it a day. I also combine milk products like yogurt with most meals. Sugar and Alcohol are pretty much off my list. I do treat myself to a little dark chocolate (85% + cocoa) in the evening. I don’t know if that’s playing a negative role. The research on mice apparently show a positive effect? A shortbread biscuit every couple of days.
I have been meaning to ask you about apple cider vinegar which I have with my daily salads. Is this anything to worry about? I also eat and drink lots of beetroot?
The only present issue I seem to be experiencing is this back pain (that occasionally spreads towards my stomach). Other then that things seem fine on 40mgs. The one (possibly worrying) thing I thought I mentioned was the slight hgb drop (0.5) which I think you also experienced. I’m hoping this is an anomaly or a sacrifice that I have to take but any further drop will mean reducing the Febuxostat to see if it recovers. The next blood test is ultimately the most crucial for this reason alone.
Exactly as you say, I will definitely be doing the slow cautious approach this time. I really don’t need the hgb / hemo drop headache I got last time.
20mgs and 30mgs didn’t seem to impact the blood counts but I didn’t take them long enough to really build a trend (month and a half). 40mgs “may” be the culprit for the back pain and slight hemo drop.
Apologies for adding to the above questions, do you know anything about the possibility of Vitamin B complex impact on UA? Higher / Lower?
Thanks twkrit.. Honestly I appreciate your support through this.
January 25, 2018 at 1:12 pm #6422
Keith TaylorKeymasterŦallars: Ŧ 1163.18
do you know anything about the possibility of Vitamin B complex impact on UA? Higher / Lower?
Ask and you shall receive: Vitamin B for Gout.
I wonder if that is part of the reason vegans are at higher risk of gout? Because I think vitamin B deficiency is associated with veganism (along with other deficiencies). Though obviously easy to rectify through better food choices, as well as supplements.
January 25, 2018 at 2:21 pm #6424
I experienced a ~1 g/dl drop (I hope there’s no unit mixup) from which I have only marginally recovered.
I’d have thought you’ve been on 20mg or more long enough to rule out 20mg depressing your hemo significantly. Even if xanthine oxidase inhibitors end up not being a complete solution in your case, a small dose would still help with your UA on its own and should also make drugs boosting UA excretion less risky.
A little dark chocolate should be harmless. It’s all about the amount you eat.
I’m wary of vinegar in general but it might just be indicative of an issue with one type of vinegar (or plain superstition) and I have no opinion about ACV specifically or raw beetroot.
Please do not start obsessing over food.
It’s no big deal but I believe I did write tawrikt without shuffling the r and the k.
January 25, 2018 at 5:21 pm #6426
@keith – many thanks for that article. Sounds interesting. I’ll continue the supplements then 🙂
1g/dl is indeed the correct measurement – my drop “so far” is 0.5g/dl.
Yes, if dropping down is required the next adequate dose to start would be 20mgs and then test again from there – maybe even a complete stop and restart at 20mgs. Anyhow, just under a week to go.
Believe me I am the last person to be obsessing over food. If you remember all my posts to help others have been to enjoy life and not take the food part too seriously. These are nothing more then curiosities for the upcoming bloods.
Typo error on the name mate.
January 25, 2018 at 8:40 pm #6427
If you have cut down on the meat in your diet, then it could be possible your b12 levels are low and it would be beneficial to supplement your diet to ensure you are getting enough. Usually docs check blood work levels for b12, at least mine does. Also is there a possibility that the gout back pain is caused by the drugs dissolving kidney stones caused by excess uric acid? Could you have kidney stones? Does the dissolving of kidney stones cause pain like the dissolving of uric acid in the joints does? I have also found that upping milk and other dairy is helping. Try keeping a food diary of sorts to see if you can find what foods are triggers for you. Good luck with your next test results.
January 25, 2018 at 9:04 pm #6428
There should be enough B12 in dairy.
I had violent enough pain when I first tried febuxostat that I thought about kidney stones even though the location of the pain didn’t seem right. Unlike UA crystal in joints, dissolving kidney stones could in theory cause pain by passing. Doctors dismissed the notion at the time.
Of course, doctors are sometimes wrong but the way the pain kept coming back long after I started the treatment would in retrospect seem to make the kidney theory exceedingly unlikely.
January 26, 2018 at 2:01 am #6429
To add to Keith’s comment about vegans having a higher risk for gout, than vegetarians for example. I think it would be mostly due to no ingestion of dairy, as one article someone? posted in here I think explained that the reason milk is beneficial to gout is that it contains ortoic acid, vitamin b13, which prevents uric acid from being reabsorbed back into the blood so it gets expelled by the kidneys in the urine. I hope I have explained this correctly, please correct me if I am wrong.
January 30, 2018 at 11:52 pm #6486
@jean – The milk situation seems interesting. Do you have any references to this (preventing reabsorb). Where would the reabsorb occur? I was under the assumption that uric acid is removed from the blood by kidneys and stored in the bladder in preparation for excretion (pee)? Do you mean reabsorpation from the bladder? Thanks
@nobody – You mentioned why should vegetable purines be treated different from animal purines. I was wondering if you had any specific research or reference to this or if it was just your curiosity?
p.s. Blood test is tomorrow. Extremely anxious.
January 31, 2018 at 10:07 am #6487
It’s only one test. What matters most is the picture built by all your tests.
Good luck anyway!
I don’t understand your question, or perhaps the underlying reasoning.
Surely you are not suggesting as homeopathy proponents do that the properties of molecules depend on where they’ve been.
January 31, 2018 at 10:36 am #6488
mickyParticipantŦallars: Ŧ 1.04
hey d q
good luck with the blood test.
January 31, 2018 at 5:13 pm #6490
For the milk reference I was just quoting an article on here regarding the benefit of ortoic acid in milk. It appears to work by preventing uric acid from going back into the blood so it then gets expelled by the kidneys as urine. The ortoic acid helps stimulating removal of uric acid by the kidneys. If anyone can explain this more thoroughly on a cellular level, that would be interesting. Meanwhile dairy is my new best friend. Apparently the good bacteria in yogurts which increase the good bacteria in your gut also help to eliminate uric acid too. Good luck with your blood tests btw.
January 31, 2018 at 5:34 pm #6491
March 26, 2018 at 6:11 pm #6685
Try CBD rub on the area. Natural no side effects and WILL take the pain away no more Rx crap. no more side effects. helps sleep anxiety and pain.
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