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  • in reply to: Low red blood cells/ low Haemoglobin #10487
    d q
    Participant


    Hi,


    @nobody
    – it’s been a long time… A really long time. Will be in touch soon.

    @Gopro – This is an interesting question as it opens up both iron and allopurinol as potential ‘culprits’ or ‘side effects’ to a low haemoglobin. What needs to be noted here is allopurinol effected my haemoglobin drastically and now use Febuxostat. The kidney’s constantly monitor the level of oxygen in the blood and based on the current levels a specific hormone called erythropoietin is released into the blood. If the oxygen levels are right, the kidneys secrete just enough to maintain correct red-cell turnover. If the oxygen levels in the body are low (low haemoglobin) the kidney’s release much more of this hormone into the blood which starts the signal to ramp up production of red blood cells. This technically increases the red cells and in turn the haemoglobin until things stabilise and oxygen levels return to normal.

    I have an underlying condition which generally means I run at a lower level of haemoglobin however when I took allopurinol I had around a 20% reduction within 2 months. Now I am no doctor by any means however my theory is that because allopurinol is metabolised in the kidney it MAY have impaired production of this hormone or the ability for the kidney’s to correctly identify oxygen levels in some people. Unfortunately I learnt this too late and didn’t get time to check my erythropoietin levels prior to immediately stopping the drug to see how much of this hormone was actually in my blood.

    From this you can take away two things.

    1) Kidney’s monitor oxygen levels and release a hormone to adjust this
    2) Allopurinol is metabolised in the kidneys

    Is there a link in some people, I couldn’t get to find out as I stopped it right away and moved to Febuxostat. However maybe you still can….

    The iron situation can and will affect healthy red cell production but too much of it can cause problems too. There would not be much point in going down the iron route until you had a test to see what level it is. You will need 2 tests (one blood test is enough). One for Ferritin and one for Serum Iron.

    Once you have those levels and tally it up with the haemoglobin you will be able to see what may be causing the issue. It is essential however to have some previous tests to create trends as single results are always susceptible to noise.

    Let me know if you need further help or advice.

    Good luck.

    in reply to: Febuxostat dose change. Or different time of day? #9013
    d q
    Participant

    received and responded! πŸ™‚

    in reply to: Febuxostat dose change. Or different time of day? #9011
    d q
    Participant

    Deleted.

    in reply to: Febuxostat dose change. Or different time of day? #8988
    d q
    Participant

    Haha! CVE from Febuxostat – what a terrifying thought. Being reasonably high on 100mgs probably wouldn’t surprise me though.

    Yes, my previous rheumatologist said something similar with regards to a significant amount of UA remaining in muscles and tissues all over your body. He explained it like a a bus route which had been out of service for months whilst passengers kept accumulating at the bus stops. “Your going to need quite a few buses running on time constantly to get the passenger backlog clear and only then can you adjust the schedule and size of the bus”. I explained to him if these erratic results could just be clusters of crystals dissolving and he said it’s highly unlikely unless tophi is evident. Although I’m not too sure if that’s true because I haven’t changed anything at all in my diet.

    I had my most recent hemo blood test a few days ago and the UA result came back at 345ummol which was very disappointing. Lower then 360 yes but higher then 330. The very first rheumatologist I saw wanted me under 360ummol however the second one insists on being under 330ummol.

    All evident side effects seem to have settled down (constipation, aches, etc.) and ALT and ALP levels are OK (ALP levels have definitely increased but are still within the normal range [+-20] ). I’ve also just noticed that my AST levels have never been checked after starting Febuxostat and that my hemo hospital doesn’t even check them by default when doing Liver function (how bizarre!) unless that’s normal? From what I understand ALT and ALP are the key numbers for Febuxostat but I’m a little paranoid and worried now. I will get them checked at another hospital once I get a chance to visit my GP.

    I too am not too keen in alternating doses but wouldn’t that overall be better then going all out on 120mgs daily or would regular spikes be a concern to cause an attack? Or maybe just go to straight to 120mgs in the hope that I could be off the higher dose quicker?

    What would you suggest providing the numbers mentioned above (Liver, UA)?

    p.s. How does one even know when these deposits are all gone to reduce the dose and rule out possible spikes anyway?

    Thank you so much mate.

    Finally, let’s close the gap on relying on this forum to maintain contact – what would be the best way get my email to you? temp email sites?

    Thanks again buddy.

    in reply to: Febuxostat dose change. Or different time of day? #8975
    d q
    Participant

    @nobody and @Keith..
    My my my… what a period of time has passed since our last encounter.

    2019 has been a roller-coaster and is finally settling down. tawrikt I’m still waiting for that email stating when your coming over to the small island so I can buy you a coffee (as you know, I stopped drinking long long ago) πŸ™‚

    Keith I’ve taken a brief look at a few posts and haven’t seen your presence much. I’m hoping your still good and well and that this forum isn’t just about living from some server in a cupboard in the attic..! Let me know if you need help maintaining the site or if I can help with the tech side.

    I wanted to give you both a little update.
    So as you both know it’s been tricky times with my situation. We will all know in around 3 months if the blood medication I have been taking since last year is in fact a placebo or is the real thing and it just didn’t work. If it was the placebo, well… that opens a new avenue all over again and we can deal with it then. As we concluded last time I have stuck firmly with the 100mgs Febuxostat ignoring my primary rheumatologist advice to move to 120mgs (more on that later though).

    As you correctly advised, the UA levels started to drop naturally without changing my dose or dietary habits around January this year. They have spiked twice which is something I’d like to ask you about. So to the results:

    Nov 18 – 340
    Nov 18 – 378 (tested twice in this month)
    Dec 18 – 374
    Jan 19 – 353
    Feb 19 – 319
    Feb 19 – 392 (tested twice in this month)
    Mar 19 – 349
    Apr 19 – 327

    The 392 spike in February seemed to have been noise but the 349 result in March may actually mean the February 319 result was a fluke. Taking the results in general however (340+378+374+353+319+392+349+327) / 8 = 314 [strictly average].

    So it seems the extra 20mgs that we added at the end of October 2018 reduced UA levels by only around 20 or so which as you rightly said (diminishing return).

    In light of the above my rheumatologist has suggested to increase the dose slightly more by alternating days of 120mgs and 80mgs. He doesn’t want to move into 120mgs daily just yet. Argument being to maximise any possible dosing technique in order to get consistent 330ummol and below results whilst leaving 120mgs daily as a final option.

    I’m not too sure what to do? I just don’t want my gout to be getting insidiously worse with these erratic results (unless you think they are within safe values to play the waiting game a little longer).

    One last thing, has anyone heard of MSM (methylsulphonylmethane) or Organic Sulfar? I’ve been made aware that it helps with pain relief of bones and joints which I still experience quiet often whilst I silently keep telling myself (or wishfully think) the pain is only there because of crystal dissolution and will eventually go away…..

    Thanks!

    in reply to: Febuxostat dose change. Or different time of day? #8766
    d q
    Participant

    Quick Reference:

    18th April – 388 ummol (60mgs)
    23rd May – 413 ummol (80mgs) <β€” Strange result
    18th June – 377 ummol (80mgs)
    11th July – 360 ummol (80mgs)
    15th August – 346 ummol (80mgs)
    24th September – 350 ummol (80mgs)
    3rd October – 362 ummol (80mgs)
    29th October – 408 ummol (80mgs) <β€” Strange result possibly artefact
    19th November – 340 ummol (100mgs) <β€” Lowest result but very diminishing return

    Going by the 15th August and 24 September results its a very slight decrease πŸ™

    in reply to: Febuxostat dose change. Or different time of day? #8765
    d q
    Participant

    Hi @Keith – Yes, truth be told the frustration I’m going through and still enduring with rheumatologists that don’t really understand gout as much as I thought they would makes me sick. I’m constantly battling them with the most simple of questions yet their answers are jotty at best. Simple examples;

    Me: “But we need to get lower then 413ummol for safety?” (May consultation)
    Doc 1: “Not necessary, its normal now so just continue as usual”

    Me: “Don’t we need to monitor liver and kidney whilst on this drug”
    Doc 2: “Yes, we can do those tests too”

    Me: “Shouldn’t we start with a lower dose first (80mgs Febuxostat)”
    Doc 2: “It’s fine go for 80mgs straight away”

    Me: “Shouldn’t we do a 24hr UA test” – this went on for over around a year
    Doc 1 and 2: “No need, it wont change treatment options” – Possibly true I guess…

    ——————————————————————————-
    This DECT scan is what I want to ask about next but I get this pessimistic feeling he wont do it (or know what it is).


    @Keith
    – I’ll start another topic on the Alkaline Water side of things.


    @nobody
    and Keith – On the other side of things; the blood test result after moving to 100mgs now stand at 340ummol. So it seems that extra 20mgs dropped us +-20ummol and that previous 413ummol does like you say show some sort of artefact. Definitely diminishing results in respect to what 20mgs initially done for me back when I started however it’s still an improvement.

    I have another blood test coming up in a week or so for my hemo which will include urate so we can see what that result shows although it will only be a 9 day gap from the previous test.

    If it still lies within ~340ummol would you recommend going up to 120mgs?
    I know 350ummol and below is “good” but not “safe” according to Keith’s chart and i’m a little bewildered as what to do going forward? :/

    Thank you both so much!

    in reply to: Febuxostat dose change. Or different time of day? #8738
    d q
    Participant

    @nobody – actually, something I wanted to ask you. Do you watch the ph value on the water you drink? Should one be watching this as the most recent delivery was a ph value of 6.7 which is slightly acidic, etc.

    Cheers buddy

    in reply to: Febuxostat dose change. Or different time of day? #8737
    d q
    Participant

    I have trouble making sense of the stars in your words.
    So;

    T**t – twkrit..? (After literally searching for an hour I can’t find the name you once told me I had the honour of using! so remind me again!?) [Post#8690]

    bu***t – bullshit [post#8687] πŸ™‚

    Apologies for the delay – a few close relative problems have kept me away from the internet for a while.

    Thank you so much for making the effort and that last post mate. I know I can sometimes be a little frustrated and repeat questions but I guess it’s all part of the learning curve and even recovery curve. The rise and drop of SUA explanation you gave really helped me get my head around a few things. You highlighted an extremely important point which was indeed my May results too which were completely paradoxical yet stabilised shortly afterwards. I’ve been on 100mgs for around two weeks and my next blood test is in about 10 days.

    The last 18 months have been so tough – thank you so much for your support @nobody and @keith.

    in reply to: Febuxostat dose change. Or different time of day? #8690
    d q
    Participant

    Your guesses are as good as mine.

    haha! – brilliant, oh come on give me a little insight on your opinion @nobody!

    A cup of a coffee with your real name on it T**t is waiting for you in the UK!

    in reply to: Febuxostat dose change. Or different time of day? #8687
    d q
    Participant

    Hi, yea I’ll stick with 100mgs for a little longer and see how that goes. Once I do those bloods in a few days I’ll report back. The convenience of that single 80mgs dose was so ideal – this splitting thing can be cumbersome at times.
    Can’t I just split 10 pills and keep them in a pill box!?

    I know we discussed this but with a sporadic result like 408ummol, could it be a cluster of crystals dissolved and is what raised the UA levels? The reason I am asking is the blood test was taken literally 48 hours later and the only TWO thing occurred/changed prior;

    1. I changed to taking Febuxostat with food rather then without. Maybe the amount of medication absorbed is slightly less? (Which I have stopped BTW).

    2. The ‘possibility’ of a gout attack two days prior to the blood test (although that would reduce numbers slightly wouldn’t it?)

    Cheers.

    p.s. Just out of curiosity would another way of playing this be taking 120mgs for a few months and then roll back to 80mgs..? (Lower results –> quicker return to lower dose approach)?

    re, re:
    “We hope this information proves useful to you” – do me a favour, all bu***t.

    in reply to: Febuxostat dose change. Or different time of day? #8685
    d q
    Participant

    @nobody ‘n’ @keith

    Thank you both for those invaluable responses. I delayed responding until today because I have a small update for you both and would like your advice;

    1. I did my usual haematology bloods the other day and UA levels had risen to 408ummol on 80mgs! That’s the highest level I have had since starting 80mgs months ago. Two days prior to the blood test I did take two colchicine tablets as I did have very similar gout pain and didn’t want to risk it. It wasn’t major by far but it was definitely noticeable. Could the elevation of UA levels be something to do with that pain? Maybe a minor gout attack? Maybe just noise?

    2. I decided to take on board your advice and f**k it just split both pills in half to get 100mgs. I’m on my 7th day on this dose and so far things seem OK. I’ve got my next blood test in a 3 or so days which I’ll use to check usual markers. I relies it may not be long enough but at least will give pointers.
    What I was thinking was I could potentially try 90mgs? Maybe cut the 120mgs into 2 then split that again into 2. So 60mgs + 30mgs? Would that be better then going straight to 100mgs?

    3. @nobody you mentioned it was about how much you take over the week and not really over how much per day, I was wondering how that would pan out if I took an alternating dose of 120mgs and 80mgs. We discussed with @keith that this is not Allopurinol to have miniscule adjustment leverage but alternating whilst starting on 80mgs gives a total of 680mgs weekly dose whereas 100mgs would give a total of 700mgs. Would alternating really be that much of a problem? Pill splitting is not an issue, it’s just curiosity really as it adds a touch more convenience..? [The possibility of taking over 120mgs a day despite the risk being low is just a little worrying (drug distribution in conversation)]

    4. Agree with you both on the coating side of things – I started at 20mgs cutting all the way to 80mgs and saw no real difference in overall results.

    5. The commercial side of things applies to everything. Its a cold world and nobody really has anyone’s interests at heart in the medicinal world. Sometimes I even think major sport results are rigged. Which in some cases probably are! I guess you gotta look at the very minor but important plus side which is it provides jobs and security for people.

    6. I had a look at that site and indeed it is very interesting. My rheumatologist did discuss with me in the earlier days how I was achieving 20mgs cuts and 40mgs and 60mgs etc. I simply explained I cut the pill twice. He’s first and most immediate reaction was a little grin and then went on to say how are you guaranteeing even distribution of the pill when you do such minor cuts..? I simply responded with, I can’t guarantee it but the bettering results can πŸ™‚ The conversation ended there which suggests he may not be approving of the technique.

    Finally, I’m just using a standard pill cutter that I purchased from boots a while ago. Seems to do the trick. Occasionally splits a larger piece but then I take the smaller piece of the other split pill πŸ™‚

    and to end on;

    Thank you for contacting our company regarding our product, Adenuric (febuxostat).

    You enquired if the Adenuric 80mg tablets can be halved to deliver a 40mg dose. As stated in the SmPC (section 4.2): The recommended oral dose of Adenuric is 80 mg once daily without regard to food. If serum uric acid is > 6 mg/dL(357 ΞΌmol/L) after 2-4 weeks, ADENURIC 120 mg once daily may be considered. We do not recommend that the 80mg tablets are halved in an attempt to obtain a 40mg dose. Adenuric tablets are not intended to be split, are film-coated and have no score line. In addition, the formulation does not guarantee an even distribution of the active ingredient throughout the tablet. This would constitute an unlicensed use of febuxostat.

    We hope this information proves useful to you.

    Allopurinol dosing in liquid form* – If only it worked for me ey..

    in reply to: Febuxostat dose change. Or different time of day? #8467
    d q
    Participant

    So here are the links and info @nobody and @Keith;

    Against Splitting:
    1. Contacted Takeda / Menarini directly who have explained that they cannot guarantee uniform active chemical distribution (Febuxostat) throughout the Adenuric tablet at both available doses in the UK. They said they are aware that medical practitioners do occasionally alter/offer doses in this method (for various different reasons) however this is an off-label approach. I asked her to send me the technical document stating this however she said the document is confidential and for internal use only. She will however; send me an email confirming the above.

    2. https://www.fda.gov/downloads/aboutfda/centersoffices/officeofmedicalproductsandtobacco/cder/ucm341168.pdf

    3. https://www.fda.gov/Drugs/ResourcesForYou/Consumers/BuyingUsingMedicineSafely/EnsuringSafeUseofMedicine/ucm184666.htm

    In Support of Splitting:
    1. https://www.nps.org.au/radar/articles/febuxostat-adenuric-for-chronic-symptomatic-gout – [reading this throws out everything Takeda / Menarini told me however it doesn’t mean to say Takeda are incorrect (distribution of Febuxostat in the Adenuric tablet)].

    2. https://www.sciencedirect.com/science/article/pii/S1319016413001254

    3. http://www.gout-pal.com/gout-pal-forum/please-help-my-gout/anyone-cut-uloric-80mg-down-to-40mg/ [Interesting post sometime ago here which @Keith mentions a similar situation]

    I know I presently need more of the drug but I don’t know how to safely obtain it without going all the way to 120mgs :/

    What a pickle this is indeed!

    in reply to: Febuxostat dose change. Or different time of day? #8466
    d q
    Participant

    @Keith – thank you for that excellent post / idea!

    Hi, I’ve also done some reading and yes 360ummol is generally the cut off line and with 350ummol being the absolute limit. I guess me still being in the treatment stage and not the maintenance phase I would assume a little lower would be more beneficial? Out of curiosity @nobody, what UA levels would you recommend as a safe and stay in zone whilst in the treatment phase prior to going into maintenance levels? <300 or would <330 be fine for a few months?

    On another note and I know its being actively discussed in another thread is the possibility of cutting pills. I had a little talk with my pharmacist the other day in regards to splitting the 120mgs and the 80mgs to get 100mgs and she strongly recommended I do not do this. I asked for her reasoning and she said it is treated so that is absorbed further down the gut. Splitting the tablet exposes one side to stomach acids which can disrupt this process. Now we both know I split the tablets from day one all the way to get to 80mgs and things seemed to work fine however I did some internet reading a little later and will post the references when possible but apparently splitting these tablets is indeed not recommended. From what I understood is;

    If a tablet is not scored then there is no guarantee of chemical / medicinal distribution, dissolution rates and chemical stability within the tablet according to the FDA and certain other articles. You could get 75% of the 80mgs on the left and 25% of it on the right. That would give you 60mgs if you took the left of the tablet and no more then about 20mgs if you took the right.

    Now I’m not too sure of this is to protect drug companies or how much of this is to guarantee people continue to pay for larger doses even though it is not required but it really has got me a little worried with the 50% 120mgs and 50% of 80mgs. Let’s say if all this is true especially the distribution part; wouldn’t that then mean there is a possibility I could get 80mgs from the 120mgs tablet split and 60mgs from the 80mgs split totalling more then 140mgs which even more then 120mgs I am trying to avoid taking?

    I’m a little bewildered as to what to do..?


    @keith
    @nobody; shoot me some advice!

    in reply to: Gout Assistance Required #8342
    d q
    Participant

    Hi Dean, I am so sorry to hear about your situation. Rest assured you are in the right place to get accurate and reliable information and we will all help to provide it. I’ll be watching this thread closely and will provide any information that relates to my case that can potentially help in your situation.

    Good luck.

    in reply to: Febuxostat dose change. Or different time of day? #8127
    d q
    Participant

    @keith – Thanks for that information. The only time I ever tried colchicine was during an attack I had about a month or so ago. I took the maximum dose and was able to reduce the term to around 3-4 days. During my previous attack I took maximum dose of 500mgs Naproxen twice a day with no real benefit.. It brought relief don’t get me wrong but it didn’t seem to end the gout attack. I believe Naproxen is even stronger Ibuprofen even?

    Uricosurics did come up in a few of our consultations however the general advice that was always given was “If we are able to control it with one medication then that would be the safest way – Uricosurics are generally taken twice a day and sometimes come with unwanted side effects” I’m personally not too sure about the dosing or the side effects since the Febuxostat would be there too but I guess if we still have a little more room with Febuxostat shouldn’t we explore that first?

    Yep, going by both of your recommendations cutting seems to be the best way however reducing a 120mgs pill to 100mgs or adding a further 20mgs to an 80mgs pill is indeed going to be challenging. My pill cutter only cuts pills in half so its going to have to be either a knife to the 120mgs or 80mgs cut twice in addition to a full tablet! There’s going to be a few bits here and there.

    The time of day situation is very interesting and I’ve never attempted to test it so since I have a blood test in about two weeks I’ve decided to give it one last shot. The question is when would be the best time to take it and what hinders its absorption. I know this can get very technical but in general how could one modify their schedule to potentially see the best or any benefit. @Keith I know you take Allopurinol so things might be a little different but time of day? @nobody I know our doses are oceans apart but with what and when do you normally take your dose?

    If there wasn’t enough questions above already what UA level should one be targetting now. I know Keith loves the lower the better approach but what is considered adequate since I’m coming to the maximum dose?

    Thank you both so much. Means a lot really.

    in reply to: Febuxostat dose change. Or different time of day? #8120
    d q
    Participant

    @nobody – Very interesting indeed – thank you so much. Maybe I’ll start taking it after lunch as my next blood test is indeed in two weeks and I can use this as my last attempt to see if 80mgs made a difference or not. I normally have late lunches (2pm-4pm) so would an attempt to take it after then or maybe even dinner at around 9pm be a quick two week trial to run? Or would you consider trying after breakfast (normally two slices of toast, banana and some kiwi with a home made latte)? My only concern being the milk possibly impairing the absorption or is milk fine?

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