Not sure what to do at this point..

Stopping Gout Together Forums Help My Gout! The Gout Forum Not sure what to do at this point..

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    • #9996
      Imran Rehman
      Participant


      Hey all, I’m a 39 year old male. I have had gout for over 12 years. For the first 10 or so I basically managed it with water / diet and got away with a couple of attacks a year. A few years ago it started to get worse it terms of more frequent attacks. I tried Allopurinol and it didn’t really suit me so I stopped taking it (was getting a tingling sensation).

      Last 6 to 8 months I have been on 80 mg of Febuxostat AND 1 pill of Colchicine. I hate taking too many meds so I tried to decrease the Febuxostat to 1 pill, which caused attacks. I then tried to cut off the Colchicine a few weeks ago, which resulted in an attack lasting about 10 days.

      My uric acid levels have been under 5 since I started the meds. Right before the recent attack it was 4.3. My recent problems have all been in the same foot and the same area. It basically is the side of the foot that is impacted by a bunion. My toe is going way right and I figured I had a bunion that was irritating the gout. I went to a podiatrist last time, she did an xray and said there is a very minor bunion, but not enough to be causing my problem.

      Anyway, I have done some kind of special CT scan on the foot to look for deposits and that revealed nothing – he saw no damage or whatever the hell he was looking for. The foot is constantly feeling irritated after walking, which is the scary part (I do have sorta flat feet).

      With the lower uric acid levels I keep thinking it’s not gout until I get a full blown attack, which I know is gout pain. Any ideas or help? Happy to provide more info if I left something out. I have no clue what to do.

      Best,
      Ron

    • #9997
      nobody
      Participant

      Hi!

      After 12 years of untreated gout, symptoms after less than a year of treatment are only to be expected (regardless of the dose you take). You only need some patience and gout is going to improve on its own as long as you keep that uric acid low.
      But becoming repeatedly “irritated” at exactly the same location sounds like it could be something else. As long as you keep getting attacks, any other problems you have could simply be minor gout symptoms. But there could also be damage caused by gout (or even a unrelated problem). In that case, I have no idea if it’s going to get worse or better (both are plausible). Maybe wait for 6 months to a year depending on the seriousness of the problem and if the problem persists, go back to your doctor or try a different one?

      I don’t think it’s prudent to take colchicine every day for 6 months or more. If you still need a drug to prevent attacks, maybe you could use an extended-release anti-inflammatory for instance.
      Be aware that just because an attack coincided with stopping colchicine doesn’t mean that you’d get another attack if you quit it again. It’s plausible that one thing caused the other but the randomness of attacks can be misleading.

      If I may ask a few questions:
      Did you get a DECT in order to look for crystals? If so, how much did it cost (approximately)?
      How did febuxostat impact your liver function numbers? Did you test your uric acid when you were taking a lower dose?

    • #10014
      Imran Rehman
      Participant

      Hey Nobody, thank you for taking the time to provide a detailed reply!

      1. Fair point regrading being patient; as I admitted, I haven’t stayed on a regime for an extended period of time as I have tried reducing meds. There was also a month of fasting in the last few months that didn’t help much as that resulted in not drinking water all day. I will try to stick to the meds for a month or so, but….

      2. The daily Colchicine is worrisome. Both my primary care doc and podiatrist said that isn’t normal. The SECOND Rhumetolgist I went to has suggested continuing on with it (even suggested taking two a day…wth?). You make a great point about not correlating stopping it with the last attack, but if I stop it I’ll end up violating point #1. Not sure what to do. I have probably been taking it daily for about 6 months now.

      3. Yes, it was a DECT. I WANT to say $500ish as I’ll have to pay like $100 and I’m at a point where I have to cover 20%, but I’m happy to provide final numbers once I get the bill. I do want to clarify that it showed NOTHING in the foot, nor did the xray. Your comment about “it could be something else” is exactly my thought, but at this point we’d have to rule out a problem with the foot itself, I’d think?

      4. I did what seemed like a comprehensive blood test after being on 80 mg of the generic Uloric, and my doc didn’t say anything about liver function, but I also didn’t ask. I’ll make sure to keep an eye on this at the next test.

      Please share if you have anything else from me? Also, I looked at older posts and seems like you have a ton of experience with this forum. Is there any one thing that this community is in agreement with that helps with Gout (ACV, cherries, grapeseed extract, other?).

    • #10015
      nobody
      Participant

      What “isn’t normal”?
      The important thing is not to stop taking febuxostat. The other stuff you can stop and start again, the main problem with that being that a serious attack is harder to stop than to prevent.
      Depending on the amount of colchicine in the pill, it wouldn’t be crazy taking two depending on your health and size. The problem is that it’s a bit late in the treatment to take colchicine every day. There’s also an epidemic around so this might not be the best time to weaken your immune system.

      My assumption would be that problems with soft stuff like tendons might not show up on imaging. I wouldn’t expect imaging to reveal nerve damage in particular. But I’m no doctor… best ask the pros questions about what the problem might be!
      Also, I don’t know if DECT can show crystals hidden in bone.

      There isn’t much of a community here but I think the most consensual things besides drugs are that physical stuff like warm water or ice can help with symptoms, that you should always take care to drink enough water (especially when fasting or when it’s hot) and avoid diuretics (drugs, foods, drinks… anything). But the most important thing is of course to test your uric acid and make sure it remains low.
      Cherries ought to do something, likewise dairy but you hardly need that stuff if you’re taking enough febuxostat (and anti-inflammatories when symptoms show up).

    • #10017
      Imran Rehman
      Participant

      I’m not a big guy so no way I’ll take 2 Colchicines everyday. I may actually try getting off of it entirely in a month or so, but just need to hit something that resembles stable for a bit.

      Let me ask you this – what have you seen be confused with Gout before? Are there any other things that have very similar symptoms to Gout? From reading some stuff about bunions, it feels like that could be one, anything else that you can share from all your research?

    • #10018
      nobody
      Participant

      Medical diagnoses are all over the place in my experience. Even when the misdiagnosis happened to me, I can’t prove anything because nobody really knows what goes on in a foot or a joint (short of an invasive procedure anyway).
      What I can tell you about atypical gout symptoms is that I used to be diagnosed with specific stuff such as bone deformities (three different ones, one supposedly incurable and two which could supposedly be addressed with tweaking the balance between the strength of different muscles and such) as well as general stuff like tendonitis. Febuxostat seems to have prevented or cured these problems but that could of course be a coincidence or placebo effect. It’s not like I have zero issues nowadays (I only have fewer and much less serious problems).
      About typical gout symptoms, there are a few other diseases causing serious inflammation… one is even known as “pseudogout”. Rheumatologists ought to know how to rule out these problems with blood tests and stuff (my rheuma ordered a bunch of unusual tests after our first appointment). But the most likely non-gouty cause of severe local inflammation is perhaps an infection (any doctor ought to be able to handle that unless perhaps it is a mild chronic infection).

    • #10019
      Imran Rehman
      Participant

      You may not be a doc, but you sure do know a lot about this. My rheuma did mention something about “psedogout”, but then ruled it out. Good to know that he is at least aware of this.

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