[d q]

@Naveed –

Are you taking medication for your uric acid?
If so, which medication are you taking?

This thread may also be of help to you:

Febuxostat and back pain

[d q]

You are absolutely right with regards to not making Febuxostat harder for myself. Can you point me in the direction of a product or remedy as I am not entirely sure I understand what ‘mechanically’ means here..?

Thanks mate.

[d q]

@nobody –

I’d assume a two-day break is no big deal but your body seems not to work like mine so who knows what a break might do in your case?

I have now moved up to 60mgs 2 days ago and the pains seem to have returned albeit mildly alongside the slow bowel movements. It seems there is a link. I will definitely conduct this test again soon after my blood test next week as I need to keep things fluid for now. We shall find out soon 🙂

But maybe a low-grade food allergy of some kind is contributing to your pain for instance so I’d just try a bunch of random changes over time. What would it cost you?

I’ll give a few things a try next week. From the brief test I did reducing the Febuxostat all systems were GO again with regards to bowel movements and less pain. It just seems as if there is a strong link with dose increases.

About that ER visit, it was an infection so I guess the proximate cause was immune response. Anyway, antibiotics probably saved my life. Nothing to do with any side effects (or at least nothing I’m aware of).

At least your fit and well now. That’s what matters. On another note, I believe Urea is part of the Renal tests so assuming you’ve been doing liver and renal tests when checking your urate levels you should have a few results. When I get the information from the Nephrologist about these numbers I’ll let you know so we both benefit.

@Jean – Interesting point however when taking Allopurinol for over 6 months and dropping my UA levels to +-280ummol I didn’t have any such pains, so doubtful on the kidney stones issue. Besides, from what I understand, kidney stone based pain is excruciating whereas my pains are more dull and uncomfortable. I have had an ultrasound yes, and all abdominal organs seem OK. If they were specifically looking for kidney stones however I don’t know. I have largely increased my dairy intake of full fat yogurt hoping it is helping with UA clearance. I have reduced it slightly now to see if it makes a difference. I just have a strong feeling it is the Febuxostat but unfortunately I can’t retest stopping as my blood test is so close. I completely agree with you about UA testing being an indicator rather then a diagnosis. People can have levels of 700ummol and never get gout so joint aspiration is the number one way to get a diagnosis. Getting a joint aspiration test however isn’t always so simple as appointments can take time and by then the inflammation has reduced (or drugs have been taken to reduce inflammation/pain) which results in nothing to aspirate unfortunately. Thanks for your recommendations mate.

Cheers.

[d q]

Generally speaking pseudo gout is caused by calcium build-up (CPPD) around joints and not Uric Acid build-up [which leads to gout and further complications].

The simplest form of test that can be conducted to accurately rule out pseudo gout is an X-Ray or Ultrasound. Calcium build up on joints normally occurs within your cartilage as opposed to lining the surface of cartilage as with gout and this usually shows up on an X-Ray or Ultrasound (but not always).

Unfortunately however the treatment for pseudo gout caused by calcium build-up is not as easy to treat as gout.

[d q]

361 ought to be fine as long as the results are consistently around 360 (or lower) as opposed to randomly switching between 360 and dangerous values.

This is indeed very true. It’s about a range of results and not the individual result (Although the ad hoc tests can be very helpful too). Take it from me.

[d q]

Out of curiosity, what changes did you make to your diet and was it help with bowel movements or to aid further UA level control?

Also, now that I’m back on 50mgs, will 10 days be enough (after my two day break to test pain levels) to re-adjust UA levels for accurate results?

Sorry about your ER visit buddy. I’ve been there a few times in my life including for my first ever gout attack. Did they ever tell you why you had the swelling? Allopurinol allergy or side effect?

Be well.

[d q]

@nobody – I have to say, a perfect response to what I needed to know.

Moving on slightly;

Yes, I would have assumed 500 or so wouldn’t be enough to cut it (well for dissolving crystals anyway). It’s bizarre how the hospitals I get tested at have an upper limit of +/-450 ummol or so. It doesn’t make any sense if crystals could potentially form at lower levels. Who creates these stupid reference values!
On another note, I started on 50mgs. Blood test due in about 8 days.

1) This is reassuring. Next blood test coming up and if the haemoglobin has been impacted on the higher dose (50mgs) then I guess we are onto something very interesting. Maybe a separate topic/thread all together.

2) I mentioned this treatment option to the ‘rheumatologist professor ‘ who has referred the situation to a Kidney specialist in order to get he’s opinion before potentially going on combined therapy. He also wants a second opinion on the urea situation.

Side affects:

1) Being an experimental person like you, I decided to reduce the 50mgs to 20mgs for a few days to see if the pain would reduce and it did albeit slightly. Psychological well let’s elaborate further. I went on to stopping Febuxostat completely for 2 days and guess what, nearly all abdominal and back pains stopped. Little pain remains but I didn’t want to go a further day without it in order not to disrupt the blood test in 10 days time. So, I’ve gone back to 50mgs today and will be watching closely to see if the pain returns. I know this may not cement side effect position but it’s certainly something I’ll try again later and then we can possibly conclude theories. How we proceed from there is another story however but as you say, if the hemo is not affected I may just have to soldier the pain until it subsides (if it does like yours did). On another note, -I’m hoping the 10 days at 50mgs is enough to re-adjust values for a reasonably accurate result..??

2) I did try incorporating much more fruit in my diet and I have increased my intake of full fat yogurt. but in all honesty I didn’t make many changes as I was almost dead certain this was a drug effect and not my diet. After all, I was visiting the toilet on a daily basis with no issues prior to starting Febux and thought there was no reason to after starting Febux [diet being the same].

3) We will definitely find out if after starting the 50mgs again today will bring back those pains. If it does, then as you say, maybe it will just take time to go away (providing the hemo holds up). If the pain doesn’t come back then I guess it is back to the drawing board to find other possible reasons. Either way, if these pains do return testing the start stop treatment is not conclusive and will probably have to be done again to confirm.

I completely agree with you in trying to stick with the Febuxostat side of things. Allopurinol is always there for another attempt but I really want to keep that as a last attempt (despite the convenience of the tablet dosages). I’ve gone for 50mgs as we both suggested and not for the 60mgs the rheumatologist has asked me to and I’ll be testing myself soon. Hopefully all numbers remain in the safe zone. I completely agree on the suffering for nothing analogy if I stop too. Thanks for encouraging me by the way – I appreciate it.

No worries about the Urea results. If you do happen to find any please let me know. I just want to cross check numbers. p.s. what was the reason for the ER..?

Top man mate – thanks.

[d q]

@nobody – I’ve got 2 updates and the first one starts here:
Every time I try to convince myself the very reason for these results are uric acid crystals are dissolving another part of my brain seems to convince me otherwise (or put simply, this drug isn’t working for me). As you say however it did take a long time for Allopurinol to start to bring my UA levels down. The abdominal pains which have moved from my back to my front are becoming extremely troublesome and my rheumatologist simply said if you can tolerate the pains then press on to 60mgs. He also mentioned that I am on half the “recommended dose” despite having to read up on what was the maximum dose was for Febuxostat – not very convincing! As you say, they simply take a systematic approach and very few professors see colours beyond black and white. For that matter the only doctor that has been extremely supportive and thoughtful seems to be my GP! I finally built the courage to confront my rheumatologist and ask him why all of he’s team including himself are not prepared to give me a 24hour uric acid test to see if I am just an under-excreter and he said the best advice would be to see what a Nephrologist has to say as he is concerned that my UREA is too low at 5.1 which puzzles me as the scale seems to be from 1.7 – 8.3 and mine sits firmly in the middle! He says the depending on what the Nephrologist says we can do the 24hr UA test. So I am waiting for the appointment for that.

Update 2: I’ve been under the weather recently with a bad case of the flu. Anyway, things are finally on the mend. I took the opportunity to see if those abdominal pains would go away when going back to 20mgs and they did for about a week and have now returned so either a)Side effect from Febuxostat in general or b)Something else that I haven’t put my finger on yet. My next blood test is due in about 10 days so I will check what my UA levels are on 20mgs again and then as you say potentially go straight to 50mgs if they are still in the 500’s – maybe February has dissolved enough to drop this slightly (I really really hope that is the case).

I’ve got a few questions I really hope you can help me answer;
1. Out of interest, let’s just say the maximum dose I can take with Febuxostat is 20mgs and my UA levels remain at 515ummol (down from 585). Could this ‘potentially’ be enough to keep gout attacks at bay? I know people can have UA levels as high as 700ummol and not have gout but let’s say the maximum I can get mine down to without hemo side effects or major abdominal discomfort could I possibly get away with being gout free on 515ummol for example?

2. At 515ummol is there absolutely no way crystals could be dissolving but at a much much longer period of time?

3. Out of curiosity, what does your ‘urea’ results show? I just want to know why the professor wants to refer me to a kidney specialist based on this number.

4. Your general opinions (if any) on the above.

@Keith –

Anyway, a friend often accuses me of overthinking and I believe I’m doing this now. Because you have a hypothesis, @d_q that your uric acid and hemoglobin levels are linked. So, I suggest the first step is to analyze the data and see if that is true. Then we can think about possible causes and effects and potential solutions.

I wanted to post a separate topic or at the very least a separate reply as I think I may have some interesting findings with regards to this.

Your opinions on the above would also be appreciated.

Thanks guys.

[d q]

Thanks @Keith. I’ll take a read and shoot a reply here if I have any further questions. Thanks again mate 🙂

[d q]

@nobody – agreed on the one test remark. You know my hemo condition so just anxious. I’ll start a separate topic on exactly what I mean by the previous post.

@micky – thanks mate 🙂

@Jean-clyne – Ah ok, I’ll look into it. Thanks by the way 🙂

[d q]

@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.

[d q]

@Keith – many thanks for that article. Sounds interesting. I’ll continue the supplements then 🙂

@nobody
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.

Thank you.

[d q]

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.

[d q]

Hi Jean, sorry for the delayed answer.

I am not too sure what you mean by ‘Bad side effects you got from Allopurinol were because your levels were in the normal range’. Why would you take Allopurinol if you were in the normal range to start with?

In answer to your questions;

Although I am not certain but poor circulation wouldn’t really help as the lower temperatures (less blood to the area) would generally increase the likeliness of Uric Acid crystallising in that area.

Generally speaking long term hyperuricemia will also cause a build up of uric acid in muscle tissue too. So yes, you could have had a build up of uric acid in your muscles which can lead to pain in those areas too. The thickening could have been a result of joint effusion in which your body was in a chronic low grade inflammation state.

Again I am no doctor and base my comments on experiences and tests.

Although high Uric Acid doesn’t always lead to gout I would certainly recommend you keep an eye out on your levels even if you decide not to take any long term medications. I am not trying to deter you from a drug-free approach but it could just be that you are symptom free because Allopurinol did a good job of clearing out lot’s of long term build up over the 6 months you were on it.

Uloric seems to be working but things are a little tricky at the moment with reductions not being entirely fair to dose increases. Let’s see how things develop over the next few weeks.

[d q]

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?

Thanks again.

Ignore the spinach bit (vegetable purine, etc).

[d q]

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?)

Cheers buddy.

[d q]

@nobody – hope your well.

I remember you mentioning that 40mgs was giving you unbearable side effects so you reduced your dose to something more tolerable. I was wondering if you were able to get your results down to a ‘debulking’ dose which from what I understand is under 350 ummol or have you gone for the reduce UA levels to whatever you can with less then 40mgs without letting the higher doses impact the quality of your life (i.e – risking the occasional gout attack)..?

cheers buddy.

[Author]

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