[d q]

Agreed. The haemoglobin is definitely the priority now so I think I’ll turn of allopurinol tomorrow and take blood tests bi-weekly to see how the UA levels and haemoglobin levels pan out. Im not expecting much in the way of a haemoglobin change but I’ll be so upset to see the UA levels rise.
I guess one final option would be to reduce allopurinol to 200mgs and see how that goes but that would put me in gout hell surely? I was at 386 ummol/l on 200mgs of Allopurinol and the rheumatologist mentioned that might be just enough to keep you at bay to see if your haemoglobin recovers to safer levels on that lower dose.

I’m really holding onto the wishful thinking that the last 40 days of being on 400mgs and at 283 ummol/l enough crystals have dissolved to keep an attack at bay just for a little longer until we investigate the haemoglobin problem. I’m distraught that its come to this.

Can you believe the UK only dispense 80mgs as the lowest dose.
Could I just not cut the tablet in half and see how it goes myself?

[d q]

I may have not tested twice but they have been literally in parallel of each other. Even if it was dose independent, its obviously caused some haematological disturbance. All other blood work tests are fine. That includes iron, kidney, liver to name a few. The ferritin and iron saturation levels have in fact gone up slightly because one prognosis is the body has tried to compensate for the lower haemoglobin by trying to absorb more iron from food in order to build haemoglobin up again. Those levels were absolutely fine prior to Allopurinol. The ferritin and iron saturation were going up as the uric acid and haemoglobin was going down.

I’ve done some research (including speaking with rheumatologist) to suggest Allopurinol is in fact linked to a decrease in haemoglobin and potential anaemia. We have these technical articles to refer to:

https://www.drugs.com/sfx/allopurinol-side-effects.html (under hematologic)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1768933/

He wasn’t too comfortable waiting another month to see what happens as he felt almost convinced. Frankly speaking I don’t want to hang around waiting to see if it gets worse. A month is the minimum time recommended before seeing any reasonable change in haemoglobin. So a blood test next week may show a very slight improvement but thats not definite. An upward trend needs to be seen and that would generally take no less then 4-6 weeks.

I agree entirely with the dosage, he wants to put me on 80mgs of Uloric and see how that goes but has left the choice for me to take. So i’m now torn between stopping all treatment for a month with that gout flare risk (if there is one?) or going straight to Uloric and not knowing were we are heading but not risking the gout flare.

Personally, the haemoglobin issue seems a little more concerning as thats been rock solid for literally all my life. Same goes with Liver and kidney.

I’ve done some very basic research on Uloric and blood levels and it seems as if they share very similar side effects “but not everyone gets them”. The major difference is Uloric is metabolised in the liver and Allopurinol in the kidneys. Some swear by it and are relieved to be off allopurinol whereas others found allopurinol better.

Im worried this is going to turn into a toss a coin on which option to try first scenario.

I mean it did take 6 months to go from 580 ummol/l to 283 ummol/l. Can uric acid hit peak levels in a month and strike back with a gout attack or would it generally take a little longer then a month to see any notable change/attacks?

[d q]

Hi Fabian, that was the case with my second gout attack. Pain started at base of the foot after a few long walks and took about 3 days to strike full blown (prior to starting allopurinol). After start allopurinol attacks would hit within hours during the day and last days or weeks and the last attack even lasted 2 months. What I have noticed however is as this last attack subsided the pain has moved from location to location on my foot. I guess it’s part of the whole UA clearance process.

The real question here is why are you still getting attacks after starting Uloric? Ideally you should be attack free if you’ve been on Uloric long enough to remove all accumulated deposits. How long have you been on Uloric and what are your current UA levels?

[d q]

As explained, diet uric acid management is near impossible unless you are close to the safe UA level boundary to start with (and even then you have your hands tied). If you get no side effects from allopurinol then your answer is allopurinol.

There really is no need to make this harder on yourself with “obsessive” diet worries. Eat healthy and try incorporate more dairy.

Life goes by too fast to worry about gout. Go enjoy it.

[d q]

hello Don,

Sorry about the pain in the ribs mate, but out of curiosity are you sure that’s gout? I mean I’m no doctor and I understand you have gout generally but I’ve personally never really heard of it there (ribs/sternum).

Has your doctor confirmed the location of the pain gout?

p.s. Remember that starting allopurinol may trigger gout flares so get your rib pain checked and resolved before going onto allopurinol and have your pain relief medication at hand for when you do start allopurinol just in case.

Keep us posted.

[d q]

530ish umol/L to less then 350 umol/L with milk, eggs, cucumber and water is like holding onto the hope of a world without imperialism.

[d q]

I’m confused why you are asking me what I think about that page. Where is it’s merit? Why is it influential to you?

Keith you are hilarious at times 🙂

@Mazzaroth, that post should be in the discussion forum here.

[d q]

@the usual team;

Just an update to say i’ve finally managed to get that appointment with another rheumatologist but its not until mid-July. I’ll be sure to test him with all the gout knowledge generated from this invaluable site and direct him here if he’s a little clueless too.. I’ll definitely bring up the allopurinol break topic with him… Should be interesting.. 🙂

p.s. blood test next week, we should know where the 400mgs placed UA levels.

@nobody, with regards to post ##3622, I’ll write up a separate topic with my remaining concerns on that thread since the length of it seems to have caused it to lose direction. cheers mate.

[d q]

Have you done any recent blood tests that check your Haemoglobin levels and Iron levels. These can help isolating issues more carefully especially if you have previous blood test results prior to starting Allopurinol.

[d q]

By order of your question;

1. I am no doctor however, crystals start forming once uric acid is high enough to hit saturation point (click the uric acid levels chart on the right) When these crystals do form, they still need time to accumulate in joints and cause problems. How long does that take? The general short answer is years.

2.This depends on your uric acid levels to start with. Generally, diet only can only help with gout sufferers who have ever so slightly raised uric acid. Stopping alcohol and certain purine rich foods generally drop the levels just enough to get you back into the safe zone without drugs. If you are past this margin significantly then diet alone will not help. You need to get your levels checked and only from there can you take an educated decision.

3. Genetic tests can be done to check your uncle and your DNA to identify certain links. I believe this will require specialist doctors / centres. I am not too sure on how it can be requested where you are and it may be costly.
Do you have any blood disorders?

As nobody says, try and find a good doctor and get a second opinion, there are various other tests that you can do to help diagnose gout.

Also remember, depression doesn’t help either and it is very important that you try and tackle this too. We are all here to help Rich. Good luck.

[d q]

Even without treatment, you wouldn’t suffer from gout all the time.

nobody, although this is true to some extent, it is not ideal advice especially with someone who is already suffering from depression. Gout attacks are not just a consequence of high uric acid and other more serious issues can arise from high uric acid as time passes which can lead to even further black hole depression.

Rich, I am not suggesting you take any gout reducing medication but it may be something you should consider more seriously rather then trying to spend all your life worrying about diet and any general pain from potential attacks. At the end of the day worrying is in part a form of depression and if your depression leads to thoughts that you have suggested (suicide, family, career, etc) then this in turn can cause you to turn to bad habits (alcohol, relying on anti-depressent medication, not leaving the house, etc) which may indeed cause further attacks.

I do not personally have depression myself but I am very aware from exposure to lots of people who do have it how the manifestation begins and how it develops into further complications (OCD, Weight gain, motivational loss, etc.).

Please keep updating us with your situation and we are all here to help.
Remember, everything is treatable by way of side affect balance.

[d q]

Hi Christopher, as most of your questions have been addressed by nobody I won’t get into details however I wanted to re-assure you that what you are experiencing is exactly what I am experiencing.

It has been almost 8 weeks since this attack started. My first attack was when starting 200mgs of allopurinol which settled within a few days I then started 300mgs to drop my UA further and I got hit with the big attack, that settled after about 3-4 weeks but I still had lingeriung pain and it seemed I was going through gout hell (search this site for information on that) the moment I then started 400mgs to attempt getting out of gout hell and the pain has slowly been getting better and better. I still am feeling residual pain and am due a further blood test to see my results on 400mgs. I should have the results for that in a week.

100mgs allopurinol took me to 555
200mgs allopurinol took me to 388
300mgs allopurinol took me to 33k
400mgs allopurinol not yet known.

Be tough, I know exactly what your going through and I hope the above helps.

[d q]

While your uric acid is indeed very high, not all people will develop gout. The normal approach would be to start medication after a gout attack.
Some rhematologists would say start medication after a single gout attack, some would say if you get two gout attacks within a calendar year however I am no doctor and the doctor you see may very completely in opinion.

I started medication after the second attack and looking back it now, had I known what the pain would be like, I wouldn’t even wait for the second attack and would have started it after the first attack.

On another note, a low purine diet is highly unlikely to bring your uric acid levels down alone. 9.6 is exceptionally high for diet alone treatment. Again I am no doctor.

My opinion would be to either discuss further treatment options for your high uric acid with your doctor or maybe see a specilalist rheumatologist.

Gout is an insidious disease and creeps up on you over time but not everyone with high uric acid will get it.

[d q]

Finally, I’ve never seen any evidence to suggest that gout flares during early allopurinol will increase if dose is increased. Indeed, logic tells me that the opposite must be true. Because, we absolutely know that uric acid crystals dissolve faster when uric acid is at it’s lowest. Then, faster dissolution of old crystals has to reduce the risk of gout flares. Also, it must reduce the intensity and duration of gout attacks

Just a sidenote to say this is indeed in theory true but in my experience the rapid dissolution causes more dislodging and a continuous string of attacks.
I guess you could look at like this, a slow approach (moderate dosing for a safe level of uric acid) with greater gaps between attacks as crystals dislodge slowly, or rapid dissolution and consistent pain for a short period and then thats the end of your attacks (assuming you remain uric acid controlled).

[d q]

Just a few points to add;

1. Spinach is a vegetable purine and doesn’t really count much so don’t worry too much.

2. Lean chicken (breast) I believe is less purine rich then other meat food. Keith has a list on he’s site if you search.

3. As stated by nobody, once on allopurinol and things improve you can plan for a healthy diet more then just a low purine healthy diet.

4. Get tested for kidney and liver function on all changes to your allopurinol regime.

Good luck 🙂

[d q]

Hi Keith,
With regards to the first post, I am so sorry about your accident and depression resulting in you stopping Allopurinol for a period of time. I know stopping for a period of time was generally part of your overall plan but I’m sure the depression and accident wasn’t – If you feel like talking about this, please do, I’m all ears. In any case its good news to see you back up and fully recovered and ready for action. If you haven’t had any attacks during your Allopurinol vacation then this is generally a good sign that it is possible. I will be sure to investigate the option further down the line, maybe January next year which will be my first year anniversary on Allopurinol. Hopefully all crystals dissolved and uric acid well controlled. With regards to your second post, as Tawrikit (nobody) posted, those results are absolutely correct. I’ve been on 400mgs for little over 2 weeks now and I will get tested either this week or early next week. I wanted a full 3 week to pass before checking levels to get a more accurate picture. Despite the little inflammation remaining from my 8 week gout attack! and the foot pain in general also seems to have settled. I think the move from 200mgs to 300mgs to 400mgs within a reasonably short period of time alongside the regular walking caused a surge of debulking to occur which is why this attack is taking so long! Once we get the latest results we can probably assume with more accuracy why this attack lasted so long. The target maintenance level that my rheumatologist wanted me on was under

Hi Tawrikit, thanks for posting those results quicker then I could get to them :). They are spot on and as you say are all the results during the dosage increases. I also think you are right in saying I’m not getting tested regularly enough but to be honest I just want to come out of this attack first. I agree that as per your previous post in a separate thread that these results are not quite as accurate as they should be because we haven’t arrived at equal equilibrium yet. I think now that things have settled quite well, the results we see will give a clearer picture. This in turn will as you say allow us to reach that maintenance dose quicker. I visited my GP today and highlighted to her exactly what you told me about the concentration levels being higher at first and if they will drop as crystals dissolve and moving down to a lower dose later and this is in fact 100% true, as the crystals dissolve levels go up, and once they are all ‘dissolved’ so to say, UA levels should generally just drop even further. Hopefully that will get me down to taking just 300mgs a day and not the 400mgs when things settle. Thank you for that.

I’ve got all my blood forms from my GP and will get the tests done shortly.
I’ll update you both on how it goes.

[d q]

Hi Ruben,

I’d like to start by saying sorry to hear about your recent flareups.
I, like you, was initially worried about allopurinol for the rest of my life and how that would affect me. So I avoided it at first and left it to see if I got a second attack and sure as sugar I got a second attack a year later whilst planning to go to Greece, Notting Hill Carnival afterwards and around the time of my birthday and pretty much missed out on all 3 events. For me, that was enough to say “take the meds, eat what I like, and live my life to whatever extent I can”. To be honest mate, if you have no ‘real reason’ to quit the meds apart from a voice in your head saying ‘I just don’t want to be on meds all my life’ then in all honesty mate that is the wrong approach. However allopurinol vacations are a possibility and you should take a read of Keith’s fantastic article / thread posted here:

Review Is Allopurinol A Lifetime Drug

In direct answer to is 100mgs enough, following traditional methods, starting low and increasing the dose moderately (either every 3 weeks or monthly with blood testing) is probably the right way to go and will more then likely keep attacks to a minimal [probably not stop them from coming at first though]. Too much too quick will cause any crystal build up to dissolve very fast and possibly too fast for your body to handle and as the saturation of uric acid in the blood rises so fast from the dissolve it may actually re-crystalise if the body can’t flush it out quick enough. However raising your dose ‘too’ slowly may or may not put you in gout hell, see this link: http://www.goutpal.com/9942/ouch-why-does-gout-recovery-hurt/

This is why there is no real universal answer. The best dose and the correct way of increasing your dose is best done according to your blood test results before and after each increase also making sure you include kidney function tests with your blood tests.

Finally, with each increase you should be well prepared for a possible attack and as I can’t take Colchicine, I have Naproxen ready to take should I feel an attack coming on which I also take for a day or so after I feel the attack has passed to be sure.

Hope this helps and good luck.

[Author]

Posts