- This topic has 13 replies, 5 voices, and was last updated 11 years, 5 months ago by
.
-
Posts
-
I am a bit bemused as to the usability of this site, difficult at best! That said, hello to everyone that might read this!
Last three attacks prior to the one I am suffering now have been within the last 2-3 years. Last prior to now was a three month affair started with hip, groin and ankle of left leg (first ever) Of these three previous attacks gout serum levels from blood taken measured <5 or normal for a non gout sufferer. This attack suffering now started in third toe of right foot then to the second and then to the big toe. Moved from there to the arch and decided to settle into the ankle. More like trench warfare then a settling. I tell non gout sufferers to soak their foot up to the ankle in gasoline, light on fire then stab yourself with an ice pick to begin understanding the pain!! As for pain relief or meds, I don't take any Colchine or Alpurinol or any meds. I find when under an attack nothing but a steroid injection helps and that isn't instantaneous more like days instead of hours. Water, cherries, copious water, NSAIDS, ice, heat, elevation, you name it, nothing works. I have a high tolerance to pain but crying seems to be my only release! My attacks seem to stem from some sort of incident. Slamming toe, dropping something on foot, falling on stairs, over use; ala exercise. If I preclude some sort of injury I remain gout free despite drinking beer which has never seemed to be a trigger for me! This latest attack has been brutal and has lasted 3 weeks with me hobbling now but previously crawling in extreme/excruciating pain to crutches to now hobbling. Being back to bipedal is always grand ! Never been a big beef eater, mostly chicken, salads (oil/vinegar) so never been a person who had to diet due to gout although my first attack was self diagnosed after a crab leg eating contest with my daughter that lasted a couple of hours. Say goodbye to my prized cowboy boots that had to be cut off my foot and hello to ugly utilitarian Birkenstocks 😉 So my current attack is still in ankle, (much better though) but has moved also back to big toe, worse(ning.) Any help, suggestions, tips, a friendly hello is most welcome. Thanky you all !
Post Scriptum. Also have Reiters Syndrome, undiagnosed from 1994 till 2009
I don't take any Colchine or Alpurinol or any meds. I find when under an attack nothing but a steroid injection helps
Why won't you take AlloP? AlloP is not for pain anyway. It's for treating the underlying cause of your Gout ie. Hyperuricemia. Your steroid injection won't treat the cause.
Your SUA readings during a Gout attrack are meaningless as they are not real indicator of non attack readings.
Never been a big beef eater, mostly chicken
Chicken is no good either for Gout.
Please raise usability issues in the Tech stuff forum. My aim is to provide the best gout information anywhere, but I cannot do this without some feedback about areas that need to improve. I'm especially interested in suggestions to improve the forum guidelines.
From your description, I cannot see that you have gout. All the symptoms you describe are compatible with Reiter's Syndrome (reactive arthritis). In fact the reaction to trauma seems the most likely indication that Reiter's is the culprit.
A confirmed gout diagnosis is possible with uric acid levels less than 5mg/dL, as urate moves from blood into joints and other tissues, but you must have higher levels prior to this. Have other blood tests shown higher levels? Have you had joint fluid analyzed?
I have had two instances where my left knee has blown up like a watermelon. First instance was 2007 when I had 600 cc of fluid drained ! Swollen half way up my thigh. Not pretty and the nerve pain was just wonderful 😉 The fluid was clear upon removal so the orthopedic didn't think there was a problem ;-( Second drain was opaque or milky and tests revealed no gout crystals. I have a regular foot doctor that I go to only because I have had my left achilles operated in 2004. He is the doc I saw when I self diagnosed gout after the crab eating contest. Right big toe, which I will report is now going south fast and I am none to happy right now!! He has taken blood from last three attacks. I don't like taking any of the gout meds, don't like them indeed so refuse to take the meds and meds for Reiters are worse! I will just have to deal with it because I can't get a shoe on and wont be able to drive to the docs! Anyone got a hatchet?
ME said:
I have had two instances where my left knee has blown up like a watermelon. First instance was 2007 when I had 600 cc of fluid drained ! Swollen half way up my thigh. Not pretty and the nerve pain was just wonderful ;- The fluid was clear upon removal so the orthopedic didn't think there was a problem ;-( Second drain was opaque or milky and tests revealed no gout crystals. I have a regular foot doctor that I go to only because I have had my left achilles operated in 2004. He is the doc I saw when I self diagnosed gout after the crab eating contest. Right big toe, which I will report is now going south fast and I am none to happy right now!! He has taken blood from last three attacks. I don't like taking any of the gout meds, don't like them indeed so refuse to take the meds and meds for Reiters are worse! I will just have to deal with it because I can't get a shoe on and wont be able to drive to the docs! Anyone got a hatchet?
So if the tests revealed no Gout related crystals then on what basis are you saying that you have Gout? Also if you really have Gout then how will you prevent future problems if not by going on AlloP or similar drugs? Also you need to work out what your non attack period SUA readings are!
Last three attacks, blood revealed serum gout levels <5 or “quote” in a normal range. I have had one positive report 5 years ago but the levels were off the charts crazy high, like 165 or something? The three attacks were over a 2-3 year period. Well if this excruciting pain and swelling and redness and heat isn't gout then I would like someone to tell me what it isn't? Have had adverse reactions to all drugs given to me for gout and Reiters and refuse to take them. The current flare/attack as I said went from toes, to big toe, to ankle and now back to big toe in the span of 3 weeks. Back on crutches today, elevation and hating life but it is what it is I presume? I haven't had a beer in 3 weeks so I presume that wasn't a contributing factor? I drink fruit juices, water, lots of dried fruits. My protein of choice is chicken because of all the info out there about evil beef but chicken has a purine level that rivals beef according to statistics garnered here. So my diet while not totally veg, it does have alot of vegs and fruit as an alkaline effect. I have given up golf, bowling, running, and now it appears my last vestige, darts, is going also
Cheers everyone thanks for the comments !ME, Allopurinol or other uric acid lowering drugs will not help you because you do not have high uric acid and you do not have gout.
Colchicine is not gout specific – it works for many other inflammatory conditions. It might work for Reiter's Syndrome, but I really have no idea. A rheumatologist might be able to recommend other anti-inflammatories, but you need to find a rheumatologist who specializes in that condition, as it seems to be very difficult to treat, from what I've read.
The anti-inflammatory aspects of a good gout diet might help, but counting purines is pointless. Better to just try an anti-inflammatory diet.
Ooops, we posted at the same time.
Gout & Reiter's Syndrome are both forms of arthritis. Gout is caused by uric acid crystals. Reiter's is caused by unknown reactions to trauma, infections, and other unidentified or unknown things (sorry for being vague, but definitive answers are difficult to find).
The 'arthritic process' is common to both, i.e. inflammation of the joints. It may well feel like gout, and it might have some symptoms, and possible some (indirect) causes in common, but it is not gout.
In that respect, the gout medicines and alternative treatments designed to lower uric acid are of no use to you, but gout treatments that lower inflammation may be beneficial.
ME said:
Last three attacks, blood revealed serum gout levels <5 or “quote” in a normal range. I have had one positive report 5 years ago but the levels were off the charts crazy high, like 165 or something? The three attacks were over a 2-3 year period. Well if this excruciting pain and swelling and redness and heat isn't gout then I would like someone to tell me what it isn't?
I answered the second part above, but forgot the first.
The 165 is a different scale. There is an explanation in the Reference section (link near top of every page. There is also a uric acid calculator to convert between the two most common scale. Your 165 converts to a more common 0.165 mmol/L which is safely under 3mg/dL. A level that has probably just invoked insane jealousy in most of the readers here.
Nail on the head. All attacks have been caused by trauma! This latest was from too much darts practice for a big match and I knew as soon as I got to the venue on the hard floors that I was done. My two toes and arch were killing me and I left without playing much to the dismay of my team who got slaughtered after my departure. I am no Phil Taylor but decent to good. Please throw 100 pound notes
The rest as they say; is history. I have had a hellish last 3 weeks! Yes Reiters is a funny syndrome and I have been to a Rheumatologist who immediately queued in on the possibility of Reiters after the second knee drain. Problem with Reiters or the host of inflammatory or reactive arthritic conditions is there are no antigens or markers present unless under a flare and by then I can't get to a doctor! Catch 22! His anti-inflamitory medicine was way too strong! I am on a course of fish oil tablets (when I remember to take them) and they have a anti imflame properties. I am here to stay and thank you to all for welcoming me. If I can help anyone at any time let me know! Brother in arms against the pain and suffering! Cheers everyone! GoutPal said:
Colchicine is not gout specific – it works for many other inflammatory conditions.
This is interesting to know. I was given Colchicine and it worked really well but my doctor always said he was giving me Colchicine not for gout but for inflammation of toe joint caused by trauma and fracture. And he said that Colchicine is effective to treat such inflammations. My both gout attacks( first in 1999 and 2nd in 2009) were caused by trauma( first due to continued extreme exposure to cold weather almost “- 35 deg C” and 2nd due to injury).
The only difference is that first time I took 200 and 100 mg Allop for 6 months and stopped it due to lack of knowledge( not sure that's good thing or not) but this time seeing experience of others, I am mentally not prepared to stop it though my doctor has told me many times to stop it and see what happens.
So, does this mean that mere Colchicine working does not mean Gout always.
Colchicine is pretty gout specific but not completely so.
So if colchicine works well it is STRONG evidence to put into the GOUT column along with serum uric acid, appearance of the joint, which joint, etc.
From what I have read, colchicine works by alkalyzing the synovial fluid of the joint. This alkalyzation slows the inflammatory process (which is acidic) but also mediates the change of uric acid to mono-sodium-urate which the body can compartmentalize as a “neutral” tophus. It seems the immune system can more readily ignore MSU tha it can uric acid.
(This is a lot of my own theorizing…I cannot point to an article in Lancet.
)You may be right in your theory. I have not taken any Colchicine for 6 months now and though on couple of occasions I got serious twinges but I did not take colchcine or any other pain killer just to see if it was gout pain, it should flare up. And the twinges went away without flaring up. Never got twinges that last more than few minutes, 30 minutes to be max.
Utubelite said:
You may be right in your theory. I have not taken any Colchicine for 6 months now and though on couple of occasions I got serious twinges but I did not take colchcine or any other pain killer just to see if it was gout pain, it should flare up. And the twinges went away without flaring up. Never got twinges that last more than few minutes, 30 minutes to be max.
The same happens to me every couple weeks, especially after a beer blast. I'll wake up and the first footfall is oh-oh, but I'll walk it off and the foot will feel normal after a few minutes. I also haven't taken any colchicine is at least 6 months. It is always the right bunion joint and that's where I had my big attack nearly 2 decades ago.
My assumption is there is still tophus buried in the joint, which is slightly larger than the left foot bunion joint, and it is being dispersed a few crystals at a time causing a slight attack by white blood cells.
My rule of thumb is to take colchicine only if the attack/twinge persists for a half hour.
- You must be logged in to reply to this topic.