[d q]

I’m so sorry to hear that mate. The attack I got in March really really punished me too. Even till this day I still feel some of the aftermath pain and have some inflammation and I tend to just ignore it and get on with it despite the rheumatologist seeing it and telling me to take 2 * 500micrograms of colchicine a day till it resides. No thanks. I’m on a pill detox for now.

Yep, believe me after starting allopurinol and the attack I got I certainly am aquatinted with how it all works. How do you mean more hardcore? Did you take a really high dose of febuxostat for a short period of time? Or was it that you just got really overconfident with diet? I’d like to know since I might be on the same drug as you in 3 weeks! 🙂

I figured 0.1 was a typo 🙂 Ah, that’s very interesting, So you got a little dip in haemoglobin too after starting febuxostat, by any chance did it recover?

oh and I forgot to mention with the slight increase in haemoglobin after what we think was because of stopping allopurinol my uric acid has spiked to 760ummol. It was never that high and always sat at 550-600 at most. I’m hoping it could just be that residuals from what was dissolving whilst on allopurinol?

A few questions there for you 🙂

[d q]

@nobody

believe me mate, I totally understand. Insidious disease, horrible pain.
Frankly speaking I admire people like you who are able to part from their smartphone. It makes me sick watching all these people using them with no regard to how quickly life goes by. All I hear is Facebook post, or twitter feed or whatever. I personally don’t use any of it.. So call me a weirdo too 🙂

Yep, that is certainly good news with the haemoglobin mate. I can’t tell you how much weight has been removed from my shoulders. We still aren’t sure it was the allopurinol but lets hope it was.

So do you still use febuxostat? Is it a good drug? Just out of curiosity how come you got hit by an attack whilst being on it? Was it the usual after starting ULT attack?

Well at least its good news to see my rheumatologist went a little more conservative with colchicine dosing to start with. Initially he prescribed it as preventative when starting febuxostat and to reduce this long standing inflammation I have. I think he wanted me to hit 3 tablets should I get an acute attack. I am just reluctant to taking absolutely anything right now. Believe me the risk of not taking any ULT is killing me. I’m banking on the 4 months of hardcore low uric acid levels to have dissolved as much as possible and to give me some breathing space until at least I see my new rheumatologist in mid July (and if the haemoglobin shows recovery after allopurinol).

[d q]

Hello Vincent,

Here at goutpal we try to help with all aspects of gout however I am not too sure I understand what is going on in your case?

You mentioned you had a gout attack a few days ago but you haven’t mentioned if you are taking any uric acid lowering treatment or not? You also haven’t provided us with any figures like your current uric acid levels?

What two prescriptions did your doctor give you? “A seven day thing” and no mention of the second medication doesn’t really help much in trying to understand and help your condition.

If you could provide us with a little further information maybe we can help you get better quicker 🙂

[d q]

@Mauri – thanks for your contribution mate.

@nobody

Why mate, what’s bothering you? We are all heading or already are spending too much time online, being out with people is like being out with smartphones and tablets! I was out enjoying the few summer days we get yesterday and believe it or not it was like being out with smartphones. Every beep or ring everyone would look at their devices. But whats on your mind pal..?

With regards to the Colchicine, well since stopping the Allopurinol on May the 31st I did another blood test on June the 16th and it turned out the haemoglobin actually went up slightly to 5.7 g/dl. Now although not significant I am extremely thankful as the trend seems upward and haemoglobin generally takes longer then white cells or platelets to recover. My next blood test is due at the end of this month but I might postpone it slightly until first week of July as I’ve had 4 blood tests each with two tubes alone this month for all the required tests (kidney, liver, iron, fbc, urate) which can also impact haemoglobin so levels might actually be higher and recovering quicker but being hindered by the amount of blood tests I’m having.

In any case the rheumatologist prescribed two 500microgram Colchicine tablets so 1mg total a day to take for foot my which is still slightly inflamed from my 12 week attack and as preventative treatment so that I can start febuxostat immediately. I personally will not be taking any drugs including Colchicine or febuxostat or naproxen until we get to the bottom of the current haemoglobin issues (if they were allopurinol).

However I kept the tablets in the unfortunate case of an ad-hoc acute attack over the next 3-4 weeks. I am approximately 58kilos and was wondering if 500micrograms twice a day was sufficient or even too much for dealing with it?

p.s. Baring in mind this is the same rheumatologist who wanted me to go straight to 80mgs of febuxostat.

Thanks as always.

[d q]

@Gavin – Exactly the info I needed, thanks mate 🙂

[d q]

Preventative Colchicine dosing vs As Required

@nobody

@keith

How you doing guys.

I was just wondering what dose of colchicine you guys take during preventative and during acute attacks of gout..?

I’ve been given the all clear to use it should I need to but I wanted a general idea of what dose you guys take or use to take during treatment?

Cheers.

[d q]

@Gavin – good to see your back up and fully functional. Success stories are exactly what we like to hear so well done to you. Just make sure you keep a benchmark blood test for liver and kidney before starting allopurinol and a blood test shortly after starting allopurinol to compare livery and kidney functions and to confirm everything is ok.

Secondly, may I ask what sort of exercise your doing, is it just the cross trainer you have at home?

Finally, which brand of prick test monitor are you using?

Thanks

[d q]

Also if and when you move up to 300mgs make sure you get your liver and kidney checked again. Increasing or decreasing doses have their own set of impacts so make sure you get checked again afterwards.

[d q]

Hello Rich,

I haven’t had a chance to read over the entire thread but a few pointers;

1. along with your usual liver and kidney checks, check your haemoglobin and red cell count. If you have a genetic blood disorder (rapid breakdown of red blood cells) then your bilirubin will definitely be higher. You will also be able to tell if Milurit has affected these figures (if you have previous results to compare with as some doctors ignorantly only check UA levels).

2. Milurit dosing and prescribing follows a simple principle. If you want to continue eating and drinking what you eat and drink and you don’t want to worry too much about all this diet stuff (aside from maintaining a generally healthy diet) then Milurit, febuxostat, etc. are your only friend. You have no other choice. If however, your UA levels are slightly over 350ummol/l you can more then likely control everything with diet and loosing weight (if you need to) and not exposing yourself to cold temperatures.

3. If this pain is a result of gout then starting Milurit will more then likely cause a gout flare and without proper pain prevention or pain control it is going to hurt, there is no escape. Remember, when you lower UA levels, crystals will dissolve and break away and your immune system will react and this is what will cause the pain. Taking Milurit or not taking Milurit and running up the stairs or taking these long power walks will cause existing crystals to shuffle inside joints or break into smaller segments which again will cause gout flares. You need to prepare yourself for this.

4. I am around the same age as you and you have plenty of time to reverse any damage caused by gout. Don’t worry too much, you have options. I understand at that age your mindset is totally different but don’t worry, once it is under control you can return to that mindset. Take it easy pal.

5. Weed, I have no idea. It will probably dampen the pain while your “out of the zone” but as with all recreational drugs, you eventually come back to reality and that means retuning to the pain. A little searching on marijuana and gout on google brings up interesting results.

6. Depression is a clinical condition, amongst the first thing in rectifying this condition is digging down to the routes of what makes you unhappy. Have you established that yet? Don’t think about the issues, just list the issues on paper. Then its about targeted treatment.

7. Get your results, check the before and afters, see where you stand and where you want to stand then treat based on that. Trust me, there are far more serious and untreatable chronic/terminal illnesses in the world.

[d q]

@Keith

oh you are an interesting character;

24 hour test; I’ve got that on the list to mention to her next time (GP), also got it on the list to mention to the new rheumatologist in july.

uric acid medicine stop; I was on allopurinol from December until May 31st 🙂
The lowest reading I got to before stoping was 283 ummol/l for around 40 days and 336 before that for about 4 weeks, and 386 for the remaining period.. so I’ve had a good 40 days of intense clearing and another 90 odd days of mild debulking. Nowhere near as much as you but hopefully it will be enough for a little longer until we see were things are heading.

pill cutting; haha! cheers mate, good to know.

tomatoes; thats a little scary, I eat loads of tomatoes, does the research provided warrant reduction in consumption levels generally? actually, don’t worry I’ll start a separate thread..!

Happy Christmas; lets enjoy summer first 🙂

[d q]

@nobody; agreed on the dosage situation. I’ve got my second blood test next week and a visit to the haematologist to discuss and check things out. Since stopping allopurinol every time I get a touch of pain in either of my feet I think it’s a gout flare about to start. Yes, I’m that worried. I really don’t want to take any drugs at least until my first blood test next week. Around 23 days or so to go until the end. I bet my uric acid levels are already at 400 ummol or something. Type something to keep up my morale 🙂

@Keith; I was wondering if you had a chance to read the above post #4071.

Finally and off topic, the known UA lowering tomato and gazpacho soup aside, are eating lots of tomatoes in general ok with uric acid (purines etc.) or would it be wise to limit them for now despite them being fruit/vegetable purines..?

Thanks

[d q]

@Keith, no worries mate, like I said it was because I didn’t want to clutter this forum with the usual team’s technical exhaustive discussions.

anyway; yep, I stopped allopurinol on the 1st June and did a blood test the very next day to baseline everything. I’m going to hold off both the allopurinol and febuxostat until I get tested again in mid June and again during the first week of July. If the haemoglobin shows any signs of recovery (even just an upward trend) then I’ll give febuxostat a shot. Since they both work in the same way except where they are metabolised it would probably be safer for things to settle down and allow all medication to leave the system first before starting anything again. It could be nothing to do with allopurinol but we will soon find out. Mid-way through June when I see my GP again I will be sure to bring up the 24 hour UA excretion test. How does that work?

@nobody; yes, i’m a little concerned about the level of attention the liver abnormalities side effect gets. I guess the usual health vs benefit lingo comes into play here. Assuming allopurinol was the culprit I will be sure to start with 40mgs febuxostat and not 80mgs as my rheumatologist suggested.
Yes, 55 is pretty low and it would probably be wise to sit and wait for a month or so. Just out of curiosity, will the remaining half of the pill still be of use? It won’t for example oxidise and lose its effective properties (out of wrapper and cut in half)?

Keith, out of curiosity, when you stopped Allopurinol did you get an attack shortly after? That is my biggest concern! I’m constantly worrying that an attack may strike as the levels of UA increase over the next few weeks.

nobody, I know your going to say summon the powers and patience to press on for the next 25 days and I will.. 🙂

[d q]

I will leave Keith to answer your questions in detail however;

1. Yes, when you start ULT you dissolve crystals, when crystals are dissolving, they are released into the blood. During this phase UA levels will rise. Think of it like this, put a block of sugar in warm water and start stirring it. As more of the sugar dissolves, the concentration of sugar in the water rises hence why it becomes sweeter.

2. It will more then likely fluctuate again and probably be lower as time passes.

3. Taking your allopurinol medication correctly will eventually get you back on track and you may even possibly have to lower your dose later down the line.

It would be wise to consult your rheumatologist before increasing your dose yourself however.

[d q]

Rich,

bilirubin is the result of removing heme from old red blood cells. When your bilirubin is raised it can mean that you have a quick turnover of red blood cells. This can be the result of a haematological blood condition (probably from birth) where red blood cells do not live long enough in the body and have to be removed when there short life ends. When these old red cells are broken down they release uric acid which in turn causes the total uric acid levels in your body to rise. As you know, when uric acid rises, gout becomes more likely to occur. What are your bilirubin levels..?

[d q]

@Keith

Hi Keith, yep, I started the thread in the general discussion forum because I thought it was more of a friendly catchup between us usuals on my situation 🙂
Anyway, if its more appropriate here the thats also fine.

With regards to haemoglobin and safe levels, if you remember a few months ago I was a little worried to start Allopurinol because of my thalassemia and how it may affect the condition, well my haemoglobin generally lies around 7.5 – 8.0. Now any human can tolerate a few g/dl up and a few g/dl down. The problem in my case is that it has dropped by about 2 points to 5.5g/dl. I don’t have any specific symptoms (yet) as my body generally is accustomed since birth but it has led my haematologist to be a little concerned going forward. We discussed a number of options in connection with the change of lifestyle after starting allopurinol like increased vinegar intake, water intake, cherry intake, etc. and none of them seem to be indicators for g/dl decrease.

We then moved onto pharmacology factors like my incredibly long gout attack (that is still linguering around), naproxen usage, if any colchicine was used, etc. and we couldn’t find any link.

Finally we looked at Allopurinol and we noticed a steady decline of haemoglobin approximately 3 months after starting it (in December). The decline was almost linear with Allopurinol so we’ve decided to stop it cold turkey to see if it will reverse the drop.

You have experience with starting and stopping Allopurinol Keith, do you think one month without Allopurinol might trigger a flare? I’ve been on it since December and my uric acid has been about 283 ummol/l for all of May and around 336 ummol/l for around all of April.

Any pointers or direction you can give generally too?

Thanks mate.

p.s. thank you for that graph. It is indeed interesting.

[d q]

perfect, i’ll take a look around for some pill cutters. Worst case scenario is we can always just cut it in half to start with and work downwards or upwards. Like you say, we don’t want to overload the body too much as side effects are real.

Doctors wise, I also agree, they are not necessarily the books in the library but more so the librarians. They know were the books are and have a pretty good idea of how to reference them if they need to or assist someone if they need to.

I’ll do a little research as to how long allopurinol generally stays in the body but my opinion I think as you say its not long. You see the kidneys are responsible for producing EPO which is a hormone that stimulates bone marrow to create blood (which in turn increases haemoglobin). If Allopurinol as a chemical leaves the body swiftly and since Allopurinol is metabolised in the kidney then the kidneys should ideally return to their optimal functional level (correct EPO levels for my condition) regardless of the duration of whatever molecules are floating around UNLESS, those molecules are indeed what is causing the blood haemoglobin suppression.

We have become speculative specialists 🙂

Finally, I saw my GP today to discuss this briefly with her and she asked me to do a blood test today so we have a baseline a day after stopping. She went on to say we will do one in two weeks and then a further one two weeks later. She really is extremely supportive and wants to get to the bottom of this just as much as I do.

I guess the coin has been tossed, Allopurinol has stopped, and now its about the consequences (if any) over the next 30 days.

Wish me luck nobody.

[d q]

Yes, they’re marketed as Adenuric here in the UK. Could I not try 40mg and see how that goes then move up to 80mgs myself if it doesn’t fall within safe limits? At the end of the day it seems we understand more then these gout rheumatologists anyway! Seeing him yesterday made me feel I was talking with an amateur.

I guess the best option would be just to sit tight, quit cold turkey and see if the haemoglobin recovers in the next 4 weeks. If it recovers, we can always try Uloric at 40mgs or even try 200mgs Allopurinol again.

On average how long does it take Allopurinol to clear out of ones system entirely?

Thank you for your vote of confidence nobody. It really does help.
Today was horrible, it felt so strange keeping the meds in the cupboard.

[Author]

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