Update 22 :)

This topic contains 15 replies, has 3 voices, and was last updated by  d q 4 months, 3 weeks ago.

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  • #5987

    d q
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    So after over a month or so of intense work I have finally found time to myself and wanted to visit my favourite gout ‘pals’ 🙂

    A lot has happened in the last month, I cant remember were I left off but I stopped the allopurinol because of my personal suspicion of a haemoglobin drop. Haematologists are not convinced that allopurinol was the culprit because at the time I was in the midst/end of a gout flare and put it down to inflammation and infection and even suggested the possibility of pseudo gout (that was exciting). All that information was relayed to the rheumatologists which said there is no need to risk re-trying allopurinol since an alternative exists (Febuxostat). They also went on to say if Febuxostat fails we can then try allopurinol again.

    Anyway, I’ve been on Febuxostat for 2 weeks splitting the tablet twice. So a total of 20mgs. I’ve got my blood test due next week to check ALT and hgb. If these are good I’m increasing to 40mgs. This time I am doing this SLOW. Sticking to under 330ummol but no less over a period of whatever time. That express drop before caused me a serious flare in which I am still mildly enduring today. About that flare, I had an ultrasound and an MRI and both have come back as clear for gouty erosions and ‘inflammation’ however they have found thickening of the skeletal muscles (hypertrophy) and a slight collection of joint effusion. Finally, expert operators and machine that believes me. @nobody, I wanted to point out that although the ultrasound is a fantastic and reported similar results, an MRI is out of this world and was able to point out a slightly more information (like joint effusion).

    Rheumatologist wants to put me on 500micrograms of colchicine alongside 80mgs of Febuxostat for 6 months but little does he know that I wont be going anywhere near 80mgs until at least seeing my results on 20mgs. He mentioned that my ongoing pain might just be due to a constant overloading of uric acid in the region and he hopes for it to settle once the area ‘dilutes from this concentrated uric acid mess’ as such

    nobody, what I did want to ask you was will one see slight drops in uric acid and a slight raise in ALT being on just 20mgs of Febuxostat in 2 weeks? I just want to see where I am heading with this.

    Big shout to @keith, @nobody and @Patrick! 🙂
    Thanks guys!

  • #5990

    nobody
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    I’d say having been on the stuff for two weeks without being bothered by side effects is encouraging.

    As to test results, you’ll hopefully see more than a slight UA drop (though I assume it would take more than a couple of weeks for anything like the full effect to show).
    You might not see a clear abnormality by looking at a single ALT test because the numbers can vary quite a bit. I found the ratio to AST to be more revealing than ALT alone. Even with the ratio, there still is some noise so you’ll want to average several tests. A single test ought to be enough to tell if something is very wrong though.
    It took 40mg to produce alarming test results in my case (I also tried an intermediate dose between 20 and 40). A few weeks on 40 mg was sufficient. But everyone is different and you might do fine on 40mg.

    Something else the ALT/AST ratio might be useful for is if you’re taking another drug such as colchicine at the same time as febuxostat. In such a case, if your liver markers were seriously elevated, it wouldn’t be a given that febuxostat would be the main culprit.
    In my test results, colchicine raises ALT but doesn’t raise the ALT/AST ratio as much as febuxostat. But I don’t know if that would be a reliable clue in other people’s tests.

    As to MRI vs. ultrasound, maybe the doc talked up ultrasounds in order to steer me toward a joint fluid test?

  • #6011

    Keith Taylor
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    Nice to hear from you @d_q 🙂

    Also, your latest information on slowly increasing febuxostat is very interesting. Because I recently noticed a study: “Stepwise dose increase of febuxostat is comparable with colchicine prophylaxis for the prevention of gout flares during the initial phase of urate-lowering therapy”

    http://ard.bmj.com/content/early/2017/11/08/annrheumdis-2017-211574

    I haven’t studied it in detail yet. But it seems to support your cautious approach. Actually, more cautious with 10mg febuxostat increments.


    Slow Steps to Lower Uric Acid without Pain

    Slow Steps to Lower Uric Acid without Pain

  • #6059

    d q
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    @nobody, good to hear from you mate. Yes, if you were in the midst of an attack then an ultrasound would have definitely been the better option as they could have did joint fluid aspiration. Another possibility is he wanted to give you some pain relief with an ultrasound guided injection. In any case the MRI has fantastic imaging capabilities pointing out a few thins the ultrasound couldn’t [The results that were shared between tests however were consistent]. Ok so I did my blood test today and should have the results back on Monday. It was a total of 16 days on 20mgs and as you say we may not get an accurate picture but at lease we will get an indication of where we are heading. I also made sure not to start the Colchicine with the Febuxostat to isolate any potential artifacts in results. I’ll update you on those results as soon as I get them.

    @keith, that is a fantastic article. I was shocked to see such a large percentage of people who did not experience a gout flare whilst increasing Febuxostat very slowly. Although it wasn’t as much as people using it with Colchicine as a preventative I still see a huge benefit in starting Febuxostat alone in low doses as you generally will have more granular control over your condition and potentially a reduced risk of attack. However it may be better to start taking Colchicine as preventative when you reach to doses of 40mgs and above. For that matter, it was a subject I wanted to discuss with you and will start a new topic on it later.

    I did have a few questions that require both your experience(s).
    With regards to the Colchicine, as you both know I am still suffering with ongoing pain and both scans reported thickening of the skeletal muscles and some joint effusion however no permanent damage. How does one approach this

    1) Short course of Colchicine or other NSAID’s?

    2) Continue with Febuxostat alone to see if the reduction in uric acid will lead to the pain disappearing eventually?

    3) Anything else your experiences can provide?

    I am sick to my neck dealing with this low grade and in few cases high grade debilitating pain and am now willing to try anything. Podiatrist has got me wearing insoles that provide support and says it will help correct and promote correct movement in the joints.

    Good to hear from you both.

    • #6066

      Keith Taylor
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      I’m not sure what “thickening of the skeletal muscles” means. Joint effusion (above average synovial fluid) is associated with inflammation. So, it’s common during gout pain.

      As for your choices, I’d say option 2 is best. But, if your gout pain is seriously reducing your quality of life, colchicine should help.

      Some people benefit from a pain journal. That is where you record pain levels each day, then review the weekly average. So, if this is reducing, you feel encouraged by your progress. But if it isn’t, you can take action through pain relief.

      Finally, you should also consider the action of diet on pain and inflammation. Because I’ve recently read an interesting article about diet and arthritic pain control. Now, while this isn’t strictly about gout, it is still likely to be relevant for gout sufferers. So, I’ll add the report to the PDF library in a moment click the image below. But, for now, you should know that the important findings for reducing inflammation with diet are:
      – Raw or moderately cooked vegetables (lots of greens, legumes).
      – Spices like turmeric and ginger.
      – Seasonal fruits.
      – Probiotic yogurt.
      – Avoid any processed food, high salt, oils, butter, sugar, and animal products.
      – Dietary supplements like vitamin D, cod liver oil, and multivitamins can also help.
      – Low impact aerobic exercises.

      Obviously, those are pointers rather than a comprehensive diet plan. But hopefully, you won’t have too long to wait for that (hint!).


  • #6269

    d q
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    @keith, @nobody – hello again, so I had my first blood test on the 1st December after starting Febuxostat two weeks before and UA levels have dropped from (+/-) 600 ummol to (+/-) 500 ummol. All other results including liver markers were in my normal range with only a .1 drop in haemoglobin (which could just be general variations). So;

    I’ve decided to go with option 2 and increase my Febuxostat dose slightly to 30mgs daily (cutting this dose is proving very challenging) without any prophylaxis treatment. I’ve been on 30mgs for around 1 week and will be doing my next blood next week. I’m hoping the extra 10mgs will shave another 50-70ummol. Once I do my second blood test we will have good indices as to were we are heading in general. I’m going to avoid prophylaxis treatment until I get these second set of results to minimise any conflicting information (haematology wise). I think if all goes well with 30mgs I’ll press onto 40mgs sometime in January and maybe start colchicine with it to be safer. I think I’ll start a pain diary as you say Keith to keep an overall record of how things pan out. I’ve generally had good days and bad days whilst being on Febuxostat. Pain gets bad towards the end of the day mainly. I guess I just need to have a spine for the next couple of months.

    @nobody, how is going for you these days? Pain and UA control?

    @keith, I was curios as to how your doing these days with your allopurinol break? Are you back on it again? How long did you take a break for?

    p.s. Keith, thanks for the diet article which I will read tonight.

    Cheers.

    • #6273

      nobody
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      I’m doing fine, thanks.

      My guess is that you’ll see a substantial decrease in UA at your next test but that it will mainly be due to having been on febuxostat longer rather than to the dose increase. 20mg/day should already provide most of the effect of 40mg/day as it seems there’s a bit of a diminshing returns thing going on.

  • #6283

    d q
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    @nobody – Good news.

    I hope I still get a little more out of it because at 515ummol I still am in the pretty dangerous zone. Let’s hope that extra 10mgs and few more weeks on it will change everything. My blood test is due on Thursday.

    Out of curiosity, did you get any persistent back pains as you went up in dose?
    I’m not talking about the liver area. More so on the back left side.

    Cheers

    • #6284

      nobody
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      My fist blood test on febuxostat was substantially higher than my subsequent tests even though I quickly cut the dose from 40mg to about 20mg. So yes, I think there is hope.
      In addition, if your UA used to be 600 for a while, I would assume you had substantial deposits which were ill-protected (if at all) from the bloodstream. Their dissolution could well be a factor in keeping your UA so high.

      I mostly had right-side back pain… and at 40mg, I remember having mostly front pain anyway.
      In my mind, the liver does extend a bit to the left but I’m no good at anatomy.
      In any case, I did have some pain on the left side as well (same height as on the right side).

      At some point, I also occasionally had some vaguely gout-like pain along the spine and ribs but that was a different type of pain than the one I felt much more frequently which was more intermittent and digestive-like.
      Possibly that’s the liver taking a bit more room and making transit through the colon more difficult? Or maybe the drug has a direct or indirect effect on transit independently of the liver?

      If you think your pain is related to intestinal transit, you may be at right of constipation. That is better addressed early so watch for the signs.

  • #6290

    d q
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    @nobody, good to hear from you mate, hope you had a good Christmas.

    I just wanted to build up on your response to get a little more clarification (as you knew I would).

    Although I think I understand what you mean by ill protected from the blood stream, why would that make a difference? Is UA in the blood stream different from being in the muscles and joints?

    My back pain originally started on my mid-left (behind the left arm left) and over the course of a few days travelled around to my upper stomach area. Now the strange thing is the stomach area pain seems to be mild and isn’t always there whereas the back pain has been there about 6 days. It doesn’t seem to feel like an organ thing as no organs really reside there except the spleen and the pain only really hits when I stretch the area or bend to load the dishwasher. It is almost non-existent when standing or sitting up straight.

    I am beginning to think or hoping to be exact that this may be as you say some sort of gout-like pain from UA deposits that may be dissolving in these locations (muscles and around rib bones)..? It also occasionally feels like digestive pain and comes to me at times but doesn’t last long and tea seems to settle it.

    I’m not too sure its a liver thing as even slight expansion doesn’t really reflect the pain position and the main 90 degree bend for the colon sits to the right of the anatomy whereas the second 90 degree bend is around the stomach area. Fortunately my visits to the toilet have all been healthy and no pains are experienced during or after.

    I have absolutely no pains anywhere when waking up from bed for about an hour. I am trying to establish if this is Febuxostat related or just back pains from a strain, etc.

    Did your pains eventually subside or did you have to take action of some sort?

    Thanks buddy.

  • #6291

    nobody
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    I’m not Christian.

    What I meant by “ill-protected” is, well… as you probably know, there are UA deposits which can end up isolated enough from the bloodstream that imagery can still show deposits after a year or two of ULT. So I wasn’t talking about that kind of deposit but mainly about the ones which must have formed since you quit allopurinol given your test results and which I assume were in the main unlikely to survive very long after you restarted ULT.

    Your back pain seems rather unlike mine… different enough that there’s probably no point in comparing notes. If I were to throw away all caution and try to compare what you described to anything I experienced, I’d compare it to the gout-like pain I experienced soon after starting febuxostat. That type of pain went away on its own pretty quickly.
    My rheuma didn’t think it could possibly be UA-related but she’s been known to err by only considering whatever’s common/average/normal. If your pain is UA-related, in light of the location I think it should go away before long (assuming your SUA test values keep dropping).
    And if inflammation is putting pressure on a nerve somewhere, I think you might feel pain in a different location. So there may not be much point in paying attention to the location of the pain unless you can link it to physical activity, digestion or some other process that actually takes place wherever you feel pain.

  • #6292

    d q
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    @nobody – neither am I.. (Christian I mean) – I just took a wild guess 🙂

    In light of what you’ve told me about Febuxostat and the experiences in which you have gone through I think its fair to say we are reasonably in sync.

    Tomorrow is my second blood test which concludes precisely 2 weeks on 30mgs and 45 days into have initially starting Febuxostat at 20mgs.

    I should have my results shortly afterwards – wish me luck.

    Any visit to the UK planned?

  • #6293

    nobody
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    No visit to the UK planned, no. I haven’t visited in decades.

    If you’re not Christian, there are other names that can be used to refer to the customary solstice holiday.
    In case you’re wondering: yes, I have a problem with the monarchy too. 🙂

    Good luck!

  • #6297

    d q
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    @nobody

    How about Happy Festive Season and a Happy New Georgian Year? 🙂
    Haha – There inst really an active monarchy here any more, its all just tradition now. 🙂

    I got my results back today and they weren’t really what I was expecting but I guess its an improvement somewhat. UA has dropped to 490ummol so only around 25 less then the previous test of 515ummol. I know the increase was only 10mgs (20mgs to 30mgs) but maybe my expectations were a little too much. I’m aware that it could be crystals dissolving and that’s what’s keeping the levels temporarily higher but who knows.

    My haemoglobin has come down .1 so about the same as you but again that could just be a coincidence. I’ll be starting a separate thread on some side-effects though that I’d like to share and query with you.

    I’m considering going to 40mgs for 2 weeks to see how things go.

    What do you think?

    cheers buddy.

  • #6298

    nobody
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    Yes, that is a bit disappointing. Because of random variations, differences between any two tests aren’t to be trusted but 490 is one more data point, and not an encouraging one.
    Certainly it makes sense to increase the dose. I had originally guessed you might need a bit more than 40mg. From the looks of it, you might end up needing a dose closer to 80mg than I thought, even if only for a little while until most of that stuff is flushed out of your system.

  • #6299

    d q
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    Yes, it seems so – I’ll start on the 40mgs from tomorrow and do another test in 2 weeks time. My liver markers were very similar to whilst being on 20mgs. Just ever so slightly different.

    I have my rheumatologist appointment early February and I really want to show him some progress. He has a lot of faith in this drug for some reason.

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