d q

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Viewing 17 posts - 69 through 85 (of 273 total)
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  • in reply to: How to take febuxostat for best uric acid results? #6882
    d q
    Participant


    There has been no actual switch. It’s exactly the same packaging and Adenuric is written on the box but just written in a different language. The first box I was ever given looked was the new box looks like

    With the UK label stuck on top of the back part where the translation takes affect It does say manufacturer: Menarini – Von Heyden, Germany
    The Marketing Authorisation Holder is somewhere in Luxembourg and the Distributed and Repackaged by is Kosei Pharma UK.

    I’m sure its fine though.

    Could you post a picture of what your package looks like?

    in reply to: Persistent gout at low uric acid levels #6881
    d q
    Participant

    Rich, I don’t want to be sending out the wrong signals but I’ve had pain in my toe joint and not so occasionally on the ball of my foot since my last gout attack in May 2017 however my UA levels have been high since I stopped Allopurinol in May 2017. I started Febuxostat in November 2017 on a very low dose and have been increasing it very slowly in hope of avoiding another major attack. Anyhow;

    Whenever I get pain in the toe joint I leave it and just drink plenty of water and believe it or not it seems to go away. So it could just be that your joints are shedding final pieces of crystals and a burst of water helps flush them away causing no issues. In my case I’m hoping the above is the happening and the solution is temporary as I continue to drop uric acid levels.

    However when I get pain on the ball of my foot I start to get a little worried as my attacks start there so I either drink lots of water and monitor it very closely. If I feel no response in a given period of time I just take a colchicine tablet for precaution.

    I just wanted to share with you that I too still have pain from the last attack but my UA levels were uncontrolled from May to November 2017 (550+ummol) and they have only recently (March 2018) come down to 366ummol so that could be to blame.

    Have you checked with your doctor for scans that could possibly identify any damage?

    in reply to: How to take febuxostat for best uric acid results? #6848
    d q
    Participant

    With a few days to go until the blood test whilst just being on Febuxostat I’ll just wait to see what overall results I get. From there we’ll decide how to proceed. If the results are safe it may be a case of increasing to 80mgs and starting a low dose of prophylaxis colchicine for a few months.

    My last prescription of Febuxostat resulted in identical imported packaging with UK labels stuck on top (from a reputable UK pharmacist). Everything was just written in a different language but text font and sizes were the same. With my blood test so close, I was wondering if any variations can occur? The pharmacy said it was just certain suppliers for certain pharmacies and I had nothing to worry about however I have a friend who takes anti-epileptics and they must be brand specific and preferably same country manufacture. Does Febuxostat have similar requirements?

    d q
    Participant

    nobody has hit the nail on the head. Trust me, I’m relatively new to gout and I’ve only been taking medication for just over a year [side affects of Allopurinol made me move to Febuxostat instead and even now I’m in the process of working out if I’m OK to continue with it].

    The lingering pain that I deal with day to day may or may not go. The response I get from rheumatologists is simply once your uric acid levels are down for a sufficient period of time we will have a clearer picture.

    I’m no doctor but do a HLA-B*1502 gene test to get a little more information about your genes and maybe think about the outcome of not taking any drugs.

    p.s. you haven’t indicated just how high your uric levels are?

    in reply to: How to take febuxostat for best uric acid results? #6835
    d q
    Participant

    Well I’ll be doing my blood test next week and we’ll see how 60mgs for a month panes out. I have to admit there have been the odd day when the 60mgs have ended up closer to 70mgs with cuttings being imperfect but I’m sure they shouldn’t make too much of a difference. Since 366ummol only ever occurred once whilst being on 60mgs [only tested once whilst being on this dose] I cannot explain just how anxious (and worried) I am.

    The opposite is what happened to me when I started Allopurinol, it only took 2 months and dropping into the 350ummol zone before I got hit by possibly the worst attack (which is the lingering pain today). I do get the occasional not so good day and take a colchicine. Funny actually a few more weeks completes my one year anniversary since my last attack. Being on 366ummol is almost identical to where that attack wrecked havoc.

    Would a single colchicine tablet every few days give mild and very basic coverage? The reason I ask is I really don’t want anything to disturb my hemo figures whilst we get to a maintenance dose (however long that takes) should Febuxostat work?

    in reply to: How to take febuxostat for best uric acid results? #6813
    d q
    Participant

    Hello again!
    I’ve been assigned a new project a little further from my usual place of work so have found it difficult to get my own online time. Anyhow;
    Firstly thank you both for your encouraging remarks.

    Unfortunately I don’t really have a choice in the matter. I will try and plead with my GP for a blood form but its doubtful since the rhem report mentions to have a blood test in 5-6 weeks because it will give ‘a more accurate picture of my hemo status’. Really annoyed but I guess another 2 weeks wont hurt.

    1)Agreed, so on that note I’ve decided to stick with the ยฑ 60mg until my next blood test in 2 weeks. Depending on the result do you think the extra 15-20mgs would nudge me into the safer and lower 340ummol bracket?

    2)Every time you mention this in your posts it gives me that little bit of encouragement and motivation that levels were high because of the constant dissolution going and have finally come down a little. I really hope this is the case mate. I guess the second blood test will reveal all and either put me into more misery or out of misery :/

    3)It’s strange you say this as some days I have literally no gout pain and some days I get a few bad hours. Normally lying down for 30 minutes or so clears it all up. I think these are mini gout attacks or some sort of mobilisation of existing crystals. I’m not too sure. On the whole though, these bad days seem to be getting less week on week. Podiatrist is very happy with progress and said if things continue like this it may be time to start wearing my support insoles less and less with intention to wean me off them.

    I’ve got my colchicine right by my side for sure on those days and moments when things don’t feel right. As it stands it seems I’m treating myself! Yea, I thought the same about the gel. Probably just good for those shopping days or long walk days when you need a little comfort but nothing really more. I think I’ve only ever tried it once and can’t even remember what kind of comfort it gives (if any). The branded ones are really pricey too.

    I mean generally everything now depends on the hemo. That’ll be the ultimate determinist in all of this but as you say the pain management should slowly be altered from aggressive to a more relaxed approach. I’m really hoping Febuxostat doesn’t affect hemo. It probably is my last safest shot at this without going into all sorts of combination stuff. Unless I just take a low dose of Febux and try to delay gout as much as possible until a reliable and successful hemo solution comes into play (if ever – however things are in the pipeline).

    @Jean, I can also say when I walk a lot I generally feel better overall. I do get a little pain but as you say I think that is a signal of good pain rather then the bad when I had much higher UA levels (blood flow moving stuff out). Well I try to convince myself to believe that anyway ๐Ÿ™‚ . I’m really wanting to get into skipping as I hear it is a fantastic cardio and physical work out but I’m just too scared to trigger anything while being on a lower UA.

    I really hate gout. It really has taken a little bite into life.

    in reply to: Febuxostat and Colchicine Dosing for Gout #6660
    d q
    Participant

    Maybe he just being a little pessimistic and wanted to give me the easiest solution at the time which was a cheap box of Allopurinol and get me on the once a year visit patient list. In any case 10% in the lower quartile actually does make sense. Consider a patient with 400ummol – 10% = 360ummol which actually just about takes you into the safe zone. So 10% is all some people need I guess.

    That contains mostly guanine which is a harmless purine.

    I was trying to obtain this answer all along. So there are harmless purines and hurtful purines? [different types of purine that metabolise into insignificant UA values regardless of their start purine content value].

    Rheu appointment today, this will be interesting.

    in reply to: Febuxostat and Colchicine Dosing for Gout #6657
    d q
    Participant

    Correct – all this diet stuff isn’t going to reduce levels from 585ummol to 360ummol and vice versa, I’ve always known dieting at that UA level is a waste of time (rheumatologist said no matter how hard you diet you’ll never get more then 10% benefit in reduction). The ultimate direction in which I was trying to head was to see if vegetables purines count or are these non contributing purines [in the sense that if they get excreted or broken down before metabolising into UA]. For what its worth, I believe all purines are purines whether be from animals, fruits or vegetables. I’ve introduced many new colours to my diet namely Kale and this link seems to say its fine https://goutpal.net/forums/topic/kale-information/ (a little reading on this little green veg shows enormous health benefits).

    in reply to: Blueberry antioxidants and febuxostat #6656
    d q
    Participant

    So yes, I do try to discourage you from generalizing from my experience. Maybe thatโ€™s unnecessary but better safe than sorry, eh?

    Yes, but generalising is not what I am doing. Patients with similar symptoms and/or side effects are what help researchers and pharmaceuticals build trends, occurrences and even those little leaflets with so called infinite ‘side effects’ you get in medication packs. Either way, its fine.

    Sometimes Iโ€™m also trying to avoid needlessly rubbing salt in the wound (so to speak), hence strategic silences. As far as I can tell, youโ€™re already doing the best you can to reduce your SUA.

    For what it’s worth – thank you. On some occasions though knowing numbers and names does help with the motivational aspect of helping people overcome gout – the so called ‘keep up the good work factor’.

    Itโ€™s only a forum but itโ€™s still a venue in which we are discussing medical issues. You have the NHS but doctors cost me more than lawyers so it is a rather serious matter as far as Iโ€™m concerned. And money aside, some of the drugs discussed here have killed a lot more people than gout.

    Nobody is going to take you to court or get Interpol to stop you at the border or whatever nonsense that is worrying you so immensely. Your just giving advice based on your experiences (in which you always type in your disclaimers anyway). There is no need to overthink this.

    Anyway, water under the bridge.

    in reply to: Febuxostat and Colchicine Dosing for Gout #6651
    d q
    Participant

    @Keith – Agreed on the Febuxostat side of the questions. I guess over time these answers will probably come to me naturally through experience.

    I love the ‘Why does this all matter if Febuxostat is floating around your system’. Truth be told, there are so many sites out there that say fruit and veg count and sites that say they don’t so just eat more without giving thought to purine content and this site is my primary reference point for answers. Since the situation was a little up-and-down with haematological problems whilst on Allopurinol I was trying to take pre-emptive action should Febuxostat fail because of my haematological condition. I guess pre-paring for the worst. Call it a bad habit ๐Ÿ™‚

    I should really try this Alkalising approach to see how it impacts my levels. I’ll have a look at your document repository to see if there is anything there on UA creation via cell turnover and if Alkalising actually helps or increases potentially increases turn over.

    Maybe I should go back to university and study bio-science and research as at this rate my brain capacity for my regular job (which requires tons of research) is fast depleting ๐Ÿ™‚

    in reply to: Febuxostat and Colchicine Dosing for Gout #6650
    d q
    Participant

    1. Ah right, maybe its the mass increase in the water intake as my appetite hasn’t really changed much outside of the decrease in sugar.

    2. The reason I was asking was because I wanted to increase my educational curve on the subject (are purines the same across the entire food spectrum or do they differ between fruits, vegetables, meats, in their real contribution to UA etc) and I vaguely remembered you said you think they all contribute regardless from the food they come from.

    3. Oh! these tablets are paid by taxpayers like myself? I guess my cat is not going to be too happy without it’s daily nibble any more.

    in reply to: Blueberry antioxidants and febuxostat #6649
    d q
    Participant

    Sometimes I feel you try exceptionally hard to distance your situation from mine whilst there is no need to. Believe me I completely understand we are suffering different levels of pain and different extremities of gout and different side effects. Maybe my typing style is a quick to compare and concur.

    Relax sir, its a forum, not a court room.

    in reply to: Blueberry antioxidants and febuxostat #6640
    d q
    Participant

    Why the reduction in blood tests? Have numbers settled since starting Febux..?
    I too am getting used to the abdominal pains, once I get the latest blood results this week I’ll be in a better position to try and go cold turkey on the drug to see if the pains go or not finally confirming what’s causing them. Yep, I also am still getting these low-grade gout symptoms. I have the great days when I forget I have gout (no pain at all), the average days where pains come and go and the bad days where I’m too scared to push things and try and keep relaxed were possible. I think my pains are probably due to the now lower UA levels keeping gout at bay but no low enough to really get dissolving them. Out of curiosity, what are your current UA levels and how long have you been taking Febux..?

    Thankfully I haven’t had to use anything recently but do take the occasional colchicine tablet if I get too paranoid that something is coming. And what painkillers may these be that the people across the pond are so afraid of prescribing?

    If I remember correctly you always were a colchicine only man ๐Ÿ™‚

    in reply to: Febuxostat and Colchicine Dosing for Gout #6639
    d q
    Participant

    Febuxostat questions


    @nobody
    , @Keith – hope your keeping well lads.

    Blood test done. Results expected on Thursday with rheumatologist on Friday and will update you in a separate post.

    Moving along;
    I was wondering if you could help with a few questions.

    1. As you know I started Febuxostat last November and was around 58 kilos then. During the recent appointment I was down to 54 kilos and raised this with my haematologist. A few possible reasons were discussed one being diet. I told her I had cut down my sugars a lot which was a possible reason. From my own research afterwards I’ve come to know that drinking lots of water can also cause you to lose weight. What I wanted to know buddy is when you started Febuxostat did you lose any weight or were you always a large quantity water drinker therefore your weight remained the same?

    2. Now I know we discussed the vegetable purine content vs the meats content and you have substantial belief that vegetable purines create the same effect as meat purines however do you know of any actual articles that prove this? The reason I am asking is because I have heavily increased my vegetable intake whilst mildly increasing my meat intake and wanted to know if it really makes a difference purine wise (I know this is healthier but I wanted to know purine wise).

    3. In light of the increase in UA levels despite increasing the dose, maybe I am overthinking this but do you think it may be a simple case of ‘Febuxostat’ placement in the tablet? For e.g. where the actual drug composition resides in the pill. Maybe the distribution is biased to a given side or just a random concentration on either side or even the most concentrated parts being the edges of the pill as the largest UA drop was during 20mgs (approx 100ummol with hardly any further drops when going to 40mgs which if cut in half takes an empty or very low concentration middle? Maybe attempting to take the edge of the pills will result in a far greater drop?

    There are a few more questions but I’ll ask them a little later.

    Cheers folks.

    in reply to: Blueberry antioxidants and febuxostat #6625
    d q
    Participant

    Thanks mate. Will do.

    Doing well otherwise?

    in reply to: Can drinking club soda help my gout? #6623
    d q
    Participant

    @Keith – That study is indeed interesting. What I also noticed on your http://www.goutpal.com/gout-treatment/gout-cures/home-remedies-for-gout/ page was we should check for the type of water we drink too. Since we are both based in the UK, I was wondering if you could point me in the direction in the healthiest water composition for gout (Calcium, Magnesium, Sodium, Potassium, Bicarbonate, etc.? I’m assuming the PH should be on the alkaline side in general.

    I’ll do the research on finding the best brand or place to get it.
    I was after the ideal composition.

    Cheers mate ๐Ÿ™‚

    in reply to: Blueberry antioxidants and febuxostat #6622
    d q
    Participant

    @nobody – thanks for that. I will try a few different approaches to this. I’m just confused as to how this was fine before Febuxostat (daily visits and single stool as opposed to every other day and smaller stools). I’m almost positive its a side effect of the drug but maybe a small diet change can help.

    On another note, I was due my blood test today but purposely delayed it until later in the week to make sure the 60mgs had taken its maximum effect as I haven’t really been on it long enough to really warrant a change in hemo either.

Viewing 17 posts - 69 through 85 (of 273 total)