Tagged: Gout Victim Discussions
November 15, 2009 at 7:04 pm #3071J. BarleywornParticipant
This is a great site. Much thanks to GoutPal and all others involved. My first (and I hope only) gout flare up occurred early this September in joint of left toe. I’m 42 years old, and feel pretty confident that the main contributor to my hyperuricemia is some 15 straight years of drinking 4+ beers almost every single day (6-10 per day has been much more common than dropping below 3).
I’ve had no red meat for 25 years and don’t like shellfish although several of the higher purine plant-based foods are a regular part of my diet and the weekend before my flare up included anchovies on pizza and a tin of skinless boneless (and gutted) sardines, both of which I used to consume a couple of times per month. I’m overweight but not morbidly.
I only had 1 day of the shocking agony that makes gout so very memorable. Colchicine and an injection into the joint got me to where I could hobble to work the next day. However, some pain and stiffness lingered for over 3 weeks. From the moment of my diagnosis I didn’t have a drop of alcohol for a month. at about that time I had the blood test for uric acid and it was 8.6 mg/dL.
2-1/2 months now after my flareup I have continued my 100% beer-free life, although I have been having 1-5 alcoholic drinks most days (wine & brandy mostly with some bourbon). Last week’s uric acid blood test showed 7.3, just under what my hospital considers hyperuricemic.
My new health care provider (I relocated last year and just got health insurance last month after 18 months without) seems to think my uric acid is fine now and isn’t considering medication at this time.
The whole experience since the day I was diagnosed has thrown me into a state of depression that is really testing me. I really feel for you folks who have experienced years of multiple flare-ups. I guess I’m still awfully new to this and shouldn’t assume that won’t be my experience. Actually that’s part of what is fueling the depression: I feel like the sword of Damocles is constantly dangling over my head. I know how much worse things could possibly get.
This discussion is included in Gout Victims because gout is confirmed but uric acid treatment is denied. Forum discussions tend to cover a variety of topics. So I will list them here during reviews. Currently, I’ve identified:
Depression has been mentioned a few times. So I will add some research about the links between depression and gout. Later, our Original Poster introduces niacin as another example of victimization from inappropriate treatment prescribing. Again, I will follow-up the research I introduced at the time.
Finally, for now, I’ve linked to tequila as there’s an interesting link to tequila in the discussion below. Not mentioned here, but tequila is associated with reduced uric acid. However, the link is quite weak as, so far, it has not been tested with gout sufferers.November 16, 2009 at 1:19 am #6548
Love the name John! Barley -worn
Don’t let this get you down.
I’m convinced that the more the medical profession read of how bad the pain is that gout brings along- the more it will get taken seriously.
Secondly, new drugs are coming in after a long time of neglect.
Thirdly, diet is getting a lot of attention- esp. acidosis states that are connected with gout, arthritis and auto-immune problems so common. People are really living longer now – and their metabolic balance problems will have to be considered more imo.
So my early message is – Don’t beat up on yourself more than necessary [though some self assessment is always good ].
I’m a long time gout sufferer and recently taken fish, prawns, beer, wine, tequila & more without an attack (just a bit of a twinge both bunions) -this on NO major uricosurics. But including BP meds Lasix & Losartan which have been shown to assist on this.
I’m watching diet too, keeping joints mobile as possible and warm @ night.
This is not a magic formula and I don’t know the future- but it’s manageable-
Stress is a big negative factor for gout, and you are showing some in your post. My past work & emotional related stress were big.
So ‘keep on trucking’ and getting the SUA figure falling further- and with useful support/comment from many on here, you WILL make forward gains!
Final reminder- bearing in mind that now you have had a proven attack, that hospital quoted figure is irrelevant -and under 6 is the maximum long term target to aim for.November 16, 2009 at 4:23 am #6550
J. Barleyworn said:
The whole experience since the day I was diagnosed has thrown me into a state of depression that is really testing me. I really feel for you folks who have experienced years of multiple flare ups. I guess I'm still awfully new to this and shouldn't assume that won't be my experience. Actually that's part of what is fueling the depression: I feel like the sword of Damocles is constantly dangling over my head. I know how much worse things could possibly get.
I feel that this aspect of gout (in fact, most health problems) is greatly increased by anxiety caused by fear of the unknown.
Pain is a strong stimulus, and fear of pain is often worse than pain itself. Living in this constant state of anxiety is not good for your health, and my view is that you need to take control.
The good news is that your uric acid levels are not massively high, but I believe you need to take regular tests to make sure they do not continue to rise. You are not at the point where most doctors would consider urate lowering treatments.
Your uric acid levels do not need to come down by much to get to a safe zone, so it might be possible to do this through lifestyle changes.
The most important thing is to lose weight, as various studies have shown that this can lower uric acid. Do this gradually, and combine it with increased exercise – but not to the point of exhaustion. Regular exercise reduces your baseline uric acid level, though levels will rise during exercise.
Ensure good fluid intake which prevents increased uric acid concentration from dehydration, and also helps the kidneys excrete uric acid. Alcohol is a complex beast, as it raises uric acid production, but it also raises excretion. Ending a night out with plenty of water is a hard habit to form, but a good one for the gout. Milk is another good choice, and I have a report that I will summarize soon that indicates good effects from orange juice.
Your diet seems good, though it might be good to monitor iron content, as excess iron encourages our bodies to increase uric acid production.
If you can lose a pound a week and improve exercise whilst maintaining good hydration, you should see results in 2 or 3 months. I recommend that you keep a weight and exercise log, and then get your uric acid tested again. There is nothing like getting back in control to ease the black mood.November 16, 2009 at 8:48 am #6554
Whether to treat gout is a two pronged approach. The prongs are uric acid level, and number and severity of attacks.
Hyperuricemia taken by itself may be deemed non-existant in a ormal person given that uric acid at highish levels can remain in a supersaturated condition if someone has no initiating crystals. Someone who has had a single sever gout attack has made super-saturated serum IMPOSSIBLE. So, consider your 7.3 as TOO HIGH by FAR…you are depositing crystals day by day.
On the second prong: You have had one severe attack (and I'll bet several that you've dismissed a sore feet or a twisted ankle) and that does not warrant beginning a lifetime of drug treatment.
You have entered a period of watchful waiting which can be VERY depressing but do what you can to avoid future attacks. Replacing 6 beers a night with the equivalent of 3 ounces of pure ethanol (or 6 ounces of spirits) is a good start. That's 2 nicely made martinis or Manhattans by the way. Test regularly and try your best to keep below 6.0 mg/dL SUA.
But the normal route for a 42 year old is that the attacks will become more frequent and more painful so to keep that depressing thought at bay, know that the drugs do work VERY well and are there for you when you need them. It took me 4 hobbling three day bouts over 2 years and then 9 days of crucifying crippling unbearable pain to make my decision that I needed allopurinol for life. That was almost 2 decades ago and no more attacks. I can eat or drink anything I want.November 16, 2009 at 10:02 pm #6558J. BarleywornParticipant
Thank you to all of you for the input and encouragement. I just lost quite a bit of confidence in my health provider (she's a nurse practitioner; I haven't been able to see my new doctor yet at all, and the soonest appointment I could make is in 8 weeks).
She had several other blood tests run (good idea it seems), and the only flags on the results are HDL too low, LDL too high and triglycerides WAY too high: 560. So, I got a message that she had put in a prescription for me to pick up for Niacin. It took me less than 5 minutes to find several sources on the internet clearly warning that Niacin raises Uric acid levels and is not recommended in doses over 50mg per day for anyone with a history of gout. My prescription is for 500 mg/day! The fact that my one appointment with her was primarily to seek long term management of my gout seems to me to elevate the Niacin prescription from mere carelessness to absurdity.
Do any of you think I'm overreacting? Could I have possibly stumbled onto a cluster of bad information about Niacin?November 17, 2009 at 3:50 am #6561
John this is a bit tricky. You're with a new health carer and it's important to establish trust and confidence.
Firstly, it does seem a bit precipitate to bang straight in with 500 mg B3 if you have gout.
It seems she 's more worried about your cardio health than the gout risks.
Larger doses have been trialled than this, but there can be substantial other side effects.
Why not discuss your worries with your nurse or Doctor [by phone even]- and maybe suggest a lower start point dosage, as we would for uriscorics here to 'test the water'?
In any case, it's probably a corrective action for what may be a dietary lack over the years and would not stay that high for ever.
The large dose B3 action is similar to statins, so I would be wary of taking Colchicine with it also.
I would also suggest not chasing your tail online- it can be helpful in giving specifics- but you do need a steady eye, so as not to get over worried.
We are pretty strong machines , us humans!
Finally, if you are actually on track with the proposed treatment, it may be that, eventually, you may need to consider co -admin of a UA lowering drug to keep the balance. I take a number of lower level than normal BP meds to counteract each others' side effects- and it would be far from the first time this is done.November 17, 2009 at 4:30 am #6562
J. Barleyworn said:
Do any of you think I'm overreacting? Could I have possibly stumbled onto a cluster of bad information about Niacin?
I certainly do not think you are overreacting, nor do I think you are chasing your tail online.
There are clear issues with niacin (aka nicotinic acid or vitamin B3) and gout. That is not to say that niacin should never be given to gout patients – simply that any medication plan should consider all known conditions, therefore it is wholly inappropriate to prescribe niacin without co-prescribing something for the uric acid.
I believe your immediate course of action should be to write to your doctor outlining your concerns and asking for an immediate response.
I also think you should consider seeing a rheumatologist.
If you are seeking information online, it pays to stick to sites like Google Scholar and PubMed – merely relying on standard search engines reveals far too much sensationalism, myths or even downright lies. Other sites can give clues, but always check scientific references back to PubMed. Often they either do not exist, or have been quoted out of context. Wikipedia is poor in this respect, but is often a good source of reference material (i.e. start with Wikipedia, but checkout the references and share good sources, not crappy wiki summaries).
Even using good scientific research sites you need to be careful. As I looked for information about niacin and gout I found “Drug-induced gout” by J T Scott. It starts off well enough:
A number of pharmacological agents can induce hyperuricaemia, and sometimes gout, usually by interfering with the renal tubular excretion of urate but also in some instances by increasing the formation of uric acid. Alcohol is well known to have this property and in recent years diuretic-induced hyperuricaemia has become a global phenomenon. Other drugs which can cause hyperuricaemia are salicylates, pyrazinamide, ethambutol, nicotinic acid, cyclosporin, 2-ethylamino-1,3,4-thiadiazole, fructose and cytotoxic agents
Fair enough, but it then goes on to say:
A special type of 'drug-induced gout' can follow the rapid lowering of serum uric acid by allopurinol or uricosuric drugs.
That is not 'drug-induced gout'. It is part of the treatment of the disease – the early stages of uric acid lowering treatment can cause a gout flare. Gout is already there – it is not being induced by treatment, but immune response induced pain can be a temporary side-effect of correct gout treatment.November 17, 2009 at 9:28 am #6567
Forget the niacin because:
1. a 500 mg. dosage is far too little to raise HDL to any extent…2 grams is required daily
2. it will cause an increase in urate while decreasing its solubility becasue it is so strongly acidic
3. in useful amounts it causes such AWFUL flushing (which is the wrong word to describe 1000 pins being pushed into your face on a daily basis)
4. it has no effect on LDL (the correct drug treatment is with a statin…probably the strongest generic, simvastatin.)
5. if you DO take niacin, NEVER take it on an empty stomach…the flush is magnified.
EIGHT WEEKS to see a doctor…is he on the other side of the Himalayas and you need to amass a Sherpa team? Why so long?
Your nurse practioner is a WORTHLESS INCOMPETENT…don't waste any more time with him/her.
Is it possible that he CANNOT prescribe drugs and thus is limited to recommending megadoses of vitamins or nutritional supplements? (I don't exactly know how nurse-practioning works?)January 23, 2010 at 11:09 pm #7393
I have to start in saying thank goodness I found this site Jan-11-2010.
I started having this pain in my big toe in 2004 and could not walk and very painful laste about twenty four hours and dissipated. Came back same m but was getting more painful.
Then in 2006 the pain showed up in my right big toe I thought it was because I was excercising my dog and started curling, Gout never crossed my mind as A year earlier I had surgery for cancer on my Vocal chords as radiation treatment in 2003 did not work.
The attacks on my right toe got worse could not touch or put on sock or walk still lasted about 24 to 36 hours and go away for months and someone recommended Ibuprofen and it eased the symptoms now I had the cure for the pain.This continued with the attacks limited to my right toe until late 2008 when my Right hand swelled up and could not see my knuckles and very painful had to cancel my curling so headed to hospital and for three days the treated me.
So I the went to my doctor as the swelling had decreased and he sent me to specialist and I explained the symtoms he said you have gout go back to your GP and get your uric acid checked!.
Blood work came back and he said you levels are very high you have the choice of diet or medications which have side effects, that was easy decision so come back in three months and we will check you again well I cut back on red meat but not on my beer?. Bob your uric acid is still very high but the attacks were manageable Ibuprofen worked and I knew I had gout but now it was only my right hand.
I was now curling for times week the November last year I Noticed both elbows were sore and red and painful bring on Ibuprofen worked o.k till Xmas and i did go overboard on food and drilnks i never touched before liqueurs and home made turkey soup oh and lots lots beer.
I started curling Jan 4-2010 and Jan-7 I started to feel pain in my left knee next morning could not bent it was very badly swollen could not stand up without help Ibuprofen did not work never had pain like this before so somehow got into the backseat of the car and wife took me the hospital and they wanted to put me in wheelchair. Doc took x ray and d going to take blood test and check for gout about hour later the nurse came back and said we will have to take another bood test as there was A problem with the first. Two hours later the Doctor said your uric acid is sky high and gave me Naproxen that got rid of the pain in twenty-four hours.
This was the wake up call I needed at 61 not redy for wheelchair for mobility.
I checked on the Internet and found out that people that have had Chemo or radiation have high uric acid as a side effect of that treatment radiation 2003.
If it was not for the great information on this Already ordered tester read all the posts on reducing uric acid and med also great information in the diet section which is invaluable in mix and match four days in and no beer last two weeks as I made appointment Monday with my GP and my intention is to lower my UA below six as that was my reading last June .
Hope I did not ramble to much I am just so plesased that I found this site .
Bob MJanuary 24, 2010 at 5:58 am #7398
Welcome Bob – I'm also pleased you found this site
It would be good to see your uric acid numbers. If very high, it is unlikely diet alone will be enough (unless you had a really bad diet). I hope you and the doc can come up with a decent plan on Monday (tomorrow?) and get your uric acid down well below 6.January 24, 2010 at 6:47 am #7399
I would be interested to see the change in 6 months without any intervention. It sounds like you have very high figures now- but with gout there are many surprising twists on the way!
I have managed to go the opposite direction , thankfully- but have wondered what the expected maximum rate of change in SUA may normally be. This would be of immediate special interest to diet maintainers [pricipally- do manage BP meds to be gout freindly] like myself, and others ,where the movement is slower than with meds – but always appreciated when in the right directiion.
The history of SUA reading will hopefully become less of a 'black art' now many people are fed up with pain of gout and the rather [overall] second rate treatment by conventional medicine and are getting testers for own checking use.
TBH, I was surpised that your SUA figure 6 was as low last year, as the radiation therapy must have knocked it high, as you say.
Good luck with the tester- you will waste a few strips getting it right probably!
PS: where's [OP] John gone?January 24, 2010 at 7:57 am #7402
After 3 years of suffering with serious and confirmed gout, you will soon be on allopurinol 300 mg. The sooner the better both for pain relief and to prevent further damage to your joints.
At the same time, get a script for colchicine, maybe 60 pills, to have on hand. That may save you an extra trip to the GP later. Everybody with gout should have a bottleful nearby just in case.January 25, 2010 at 9:52 pm #7447
Been to the doctors today and asked him to put me on medications for my gout, He then said I will give you colchicine for the for the pain and inflammation one tablet four times a day I said sounds good I very little pain right now just on left elbow.
For the sua I will give you Allopurinol 200mg daily for the uric acid reduction and this wiil not happen overnight and will bring on gout so you will need the colchicine and he gave me requisition for blood work in about six weeks. Exactly the information I learned on this site mad feel real comfortable.
I asked him about the charcoal color at my elbow and two big toes said no problem caused by the swelling.
I am about ten days into my diet three meals day and glad i read the diet and food section on the forum as it would have been waste of time as did not have clue mixing food and it is invaluable information, My weight fluctuates during the day 199 lbs to 203 lbs no Beer in last fifteen days but lots zero coke and water ??.
Test meter should come next week so will get some tests in before I go for blood work,I have question, I read that the test strips are only good for two months??.
Bob MJanuary 25, 2010 at 11:55 pm #7448
Good progress Bob! Forewarned is forearmed indeed. Hope you get a good run with the UA lowering.
The test strips I have are 2 months- they pong when you open the pot like they are gassing chems- which is right enough. They are aobviously very re-active.
Zip is a chemist [Yes, I know – he seems quite normal otherwise 🙂 ] and may well come back on this?- to explain the rate of roll off of accuracy as the strips go out of date.
Like meds etc. they always stay on the absolute minimum margins and in this case if I ask supplier for advice I will sold more strips, pronto. That's life. use them up in date if possible and swallow the costs. No messing!
Get some meaningful results and find the right spots to stab your fingers etc. comparing- as you intend with lab results.
Make some good notes and you will be on track.February 15, 2010 at 10:28 pm #7703
Just got back from doctors who wanted to review my blood work first tme since been on allpurinol for 28 days and i was very confident going in . My own testing showed 4.0 to 4.7 the last ten days and was looking forward to getting that verified. The first thing he said was I am not jumping off the chair yet! but your Creatinine level went from normal to 163, and Range is 70-120 Your GFR is 38 REF 60 And you have never been in that range ever.
He then said your Calcium level is 3.20 Ref 2.10-2-55.
I said what is my uric acid results oh they were fine 4.3 that helped.
I said could you check BP as I bought home monitor and I was getting way high results 160/95 must be me, No way your Bp is high now that could have been the club soda I have been drinking since i stopped Beer Jan-11??? .
So I have stopped the AP and have to get blood work done next Monday and he wants to see me on the 25th when he gets back from watching the Olympics in Vancouver.
Bob MFebruary 15, 2010 at 10:51 pm #7705
Can you check your referenced links, they don't scan.
OR- maybe expand the overview on the test results?February 15, 2010 at 11:29 pm #7707
Test Name RESULTS UNITS REFERENCE
Creatinine 163 UMO/L REF: 70-120
Estimated GFR 38 ml/min REF:=60
Test name RESULTS UNITS REFERENCE
Calcium 3.20 mmoi/l :2.10-2.55
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