Keith’s GoutPal Story 2020 › Forums › Please Help My Gout! › Your Gout › 10 years of gout/agony
- This topic has 10 replies, 6 voices, and was last updated 12 years, 4 months ago by Keith Taylor (GoutPal Admin).
May 21, 2009 at 11:37 pm #2866maxed out on goutParticipant
Thankyou GoutPal – reading through your website has given me hope I can get my gout under control – thank God.
I’m now 47, have been suffering from gout roughly for 10 yrs and it has now become unbearable. Pretty bloody gross, actually. A couple of weeks ago I had yet another bad outbreak in my big toe, took double my normal daily dosage of dicloflenac – 2 x 75mg – squeezed my foot into a rugby boot and played a game of rugby. Definitely not a good move! Toe got bigger, gout also worsened in my ankle, knee, sole of foot next to toe, elbows and, for the first time ever, appeared in both my shoulder joints – pretty bloody painful actually. I took another dicloflenac, then toe burst open and out came the tophus! Toe burst in another 2 places and the tophus kept coming. Infection set in, off I went to doctor who pulled out his scapel, lanced the toe in a couple of places, squeezed the toe until the cows came home and until it halved in size. (He didn’t pay much attention when I mentioned about the bad pain I was experiencing in all the other spots, but then I guess he was pretty distraced by the toe)
So, I plan to start on allopurinal which should get my uric acid levels down under 6, as advised, and start the process of getting rid of 10 yrs of tophus and crystals. I have heaps of both – tophus and crystals that is (are they one and the same or are they different??). My big left toe is permanently double the size of the right one, the first joint in it has seized and the second joint 50% bigger than it should be. All of my fingers and their tendons are constantly in a state of gout and about half of the second and third joints in them have lumps or nodes growing and only partial movement. A joint in each wrist are constantly very sensitive. My ankles and Achilles (mainly my left) are in and out of gout continually and nodes are present in ankle. My left knee has started behaving that way too. And now the shoulder joints have decided to join in.
I have booked in to a Rheumatologist to get tested, take advice and get the ball rolling on weaning me on to Allopurinal.
How long do you think it will take to get rid of all the crap – crystals etc. – out of my numerous joints? I am heading on safari in Africa in a month for 6 wks and I can’t afford to have another massive attack and risk my toe exploding and infection setting in over there. And I don’t particularly want to be suffering the debilitating effects of gout attacks while on holiday. I suppose it’s unrealistic to expect the purging to be complete in less than 4 wks? If not, then should I delay starting the Allopurinal until I return from Africa? Or could I start taking a light dose without risking new attacks but benefit by lowering my uric acid level a bit?
I have started drinking baking soda to try to alkalinise my blood hoping it will reduce the gout attacks. I will start testing my uric acid level to see if the baking soda is having any effect (if I can source the test strips)
I know I must sound like a basket case for not having treated my gout earlier but it is thought of in such an unserious way, even a humorous way, by most – including medical people, that I suppose I thought it wasn’t so serious and would just go away. But now it controls my life. I have lost the strength in my forearms as I can no longer grip, I can’t lean my elbows on anything and I constantly limp – but worst of all (aside from my wife being fed up with me) I can’t play rugby now!
So please offer me some advice and answers to my questions above – and, again, thanks for giving me hope!May 22, 2009 at 7:28 am #4605apcoachParticipant
SOunds like you are on the right track now. I would make sure you have plenty of baking soda for your African trip. I would take 1/2 tsp every three hours until your joints feel much better. You are also going to want to drink an awful lot of water while in that hot climate so that you don't get dehydrated.May 22, 2009 at 11:19 am #4607HeavySighParticipant
I think the Allupuriol is going to be out of the question prior to your Africa trip. All the advice/articles I have seen suggest that you would expect it to raise uric acid levels before it starts to lower/control them so we shouldn't think about starting to take it while still suffering an attack.
I say “we” as I've just recovering from my worst attack; not as bad as yours sounds but then again I didn't go and play rugger!
Some people report that they haven't had the Allupuriol trigger an attack when they've started taking it, but really can you take the risk? Attacks are bad enough when you're at home!
My suggestion would be to aim for a diet as low in purines as you can get, cut out alcohol completely (and yes, I know how daft that's gonna sound to a rugby player) AND drink plenty of water. i.e. Let your body work on flushing out what's in there already.
Will you have a vegetarian food option on safari? I struggle to find detailed food advice for my local shopping, the Lord alone knows how you'll find out the purine content of zebra steaks!May 23, 2009 at 4:55 am #4612
Allopurinol does not increase uric acid – it reduces it. The painful gout flares from this process arise because old uric acid crystals that were hidden by the immune system in a protein sheath become “visible” again when that sheath falls away as the crystals dissolve. These flares are no different from the ones caused by new crystals forming, but they do tend to affect many joints at once.
These flares are not totally inevitable, but are common enough to be expected. In fact, the people that do not complain of gout flares during the first sew months of allopurinol are probably amongst that massive percentage who do not take the correct dose of allopurinol.
Dosing is vital, and you are only weaned on to it to check that there are no serious reactions. These reactions are very rare, but as with all medications, it is wise to tread carefully.
Some doctors do not undersatand the significance of dosing, opting for a “standard” 300mg dose and leaving it at that. This is usualy a complete waste of time. The best way is to start with 100 mg then increase this over a few weeks to get the right dose to bring uric acid below 6mg/dL Therefor you need blood tests every one or two weeks in the early stages.
I'm not certain that one month will be long enough to get this dosing right, so you should check this with the doctor.
With gout this serious, dietary adjustments are not likely to have much impact – unless you have been on a total no fruit, no veg, just mountains of fish and meat diet. Eating more fruit and veg, particularly dark coloured varieties, can help as they increase your natural anti-inflammatory and anti-oxidant intake. They should also help boost your immune system, which will help you recover from gout flares more quickly. The best dietary advice is to lose weight slowly if you need to, and keep well hydrated at all times.May 23, 2009 at 5:24 am #4613
I’ve just done a bit more delving into the white blood cell and diet issue. It is difficult to find much relevant, conclusive work, but I did see that “Adherence to the Mediterranean diet attenuates inflammation and coagulation process in healthy adults” shows a link between higher white blood cell count and the Mediterranean diet.
The author’s definition of such a diet is:
- Daily consumption of nonrefined cereals and products (e.g., whole-grain bread, pasta, brown rice), fruits (4 to 6 servings/day), vegetables (2 to 3 servings/day), olive oil (as the main added lipid), and nonfat or low-fat dairy products (1 to 2 servings/day)
- Weekly consumption of fish, poultry, potatoes, olives, pulses, and nuts (4 to 6 servings/week), as well as more rarely eggs and sweets (1 to 3 servings/week), and monthly consumption of red meat and meat products (4 to 5 servings/month)
- Moderate consumption of wine (1 to 2 wine glasses/day)
- Moderate consumption of fat, and a high monounsaturated to saturated fat ratio.
So zebra just once a monthMay 25, 2009 at 6:55 pm #4643
Thanks to all for your replies. What are your thoughts on using a rhuematologist v gp for gout advice and guidance? Is this the right path to take?
I am struggling with baking soda as it gives me diahrea – not as bad as colchicine though! Not sure how that will go in Africa. Unfortunately, my recent gout attack has still not subsided (but has relented on my big toe) and has moved to the side of my foot, and my fingers and wrists are getting a hell of a workover also.
The advice I keep getting and reading is to start on Allopurinal when the gout has stopped. But my gout hasn't stopped in a couple of years. In fact, the pain is unbearable if I stop taking dicloflenac. So, presumably I start taking allopurinal any time now – well, when I return from Africa that is?May 26, 2009 at 3:33 am #4649
You can get brilliant GPs who are well versed in the latest gout treatments, and you can get some who haven't really taken much notice since med school. The former will know that you need a well monitored plan for keeping blood uric acid below 6mg/dL, with appropriate pain control until existing uric acid crystals have dissolved. The latter will often tell you to take 300mg allopurinol for the rest of your life, and leave it at that.
A rheumatologist is much more likely to understand gout, but as with all professions you get good and bad.
Go with whoever gives you the clearest and most confident explanation of how they intend to achieve the plan shown in bold.July 16, 2009 at 9:46 pm #4949
This seems to be a UK strand, and it's interesting to hear your stories. I wonder how it went in Africa? It's nearly 4 in the morning and that's why I'm posting coz my knee has been a bastard for last week, elbow very tophii though little pain. Ankles starting to talk. I'm not a big 'hydrater', but I've certainly been drinking more coffee and beer and less water last few weeks. Need to work on this as I've been living away from home. My first experience of mu;tiple joint attacks
Good to hear from you
LancsJuly 19, 2009 at 6:13 pm #4978Glenn60Participant
Dear “maxed out on gout” and other readers: I get twinges just thinking about your description of your gout, it must be frightful! Maybe my story can help although I can't claim to have had the problem to that degree.
I am fortunate in some respects that my gout albeit diagnosed for 18 years, never progressed to anything more than incredibly painful swollen left big toe joint (occasionally right toe too) and some arthritic degradation of that joint. Nevertheless, the acute attacks were increasing in frequency and were preventing me from working more often than not. I had used the common relief agents colchicine (very effective although unpleasant in side affects) and indomethacin (gave me chronic heartburn) to control the pain of attacks. However, over time, it became evident that my toe joint was degrading, as is often the result of chronic gout. I have tried the many natural remedies such as celery extract, and various juices etc. etc and none were effective. I even moderated my diet based on the many described dietry triggers- my uric acid levels remained around 5-6 mg/dL over many years. Finally, I found a local doctor who solved my problem!
He basically said that uric levels (more often than not) were related to liver processing activity for the precursors of uric acid and unlikely to be much altered by diet. He said also that the best and most effective long-term way of dealing with my problem was to take daily alloprunol. I agreed, despite it known tendency to precipitate an attack early in treatment. I was prescribed 100mg daily for 1 month, then 200mg and finally 300mg which I have now taken for 18 months (there was a warning that I might get occasional attacks in the early phase of treatment). I certainly did and had symptoms in places such as my knee and elbow where gout had not ocurred before but these attacks only numbered 2 or 3, at times when I was laid up with another illness such as the flu or strained back (physical stress is known to precipitate an attack too). In my reading too I discovered that the acute inflammatory response from uric acid buildup not only is triggered when uric acid reaches precipitous levels in the joint but also when levels are falling and uric acid is being dissolved, as is the case with taking allopurinol. So I was forewarned and prepared to take some pain on my path to recovery. I can report to you that I have been attack free in relative terms for nearly 18 months except for a couple of attacks early in this phase of treatment. I no longer take other than allopurinol for gout, my uric acid is now lowered to less than 3 mg/dL, I can eat and drink anything on “bad list”.
In terms of relief of pain, for the very occasional arthritic symtpoms coming from the joint degradation that occurred and those early gout symptoms, I take a very effective, alternative anti-inflammatory drug to indomethacin, “Mobic” (Melloxicam) 1 a day when required, no stomach side affects.
So finally, I hope that my story is some help to all of you other sufferers too , and and it helps you to get on with a better pain-free lifestyle! The treatment I describe may not be an easy process for those with seriously bad gout and there are known complicating factors such as other medical conditions which must be considered. Nevertheless, I know of two other close friends who now enjoy life gout-free who have heeded this same advice. I only wish I had this information earlier in my life with gout as I may not have had to go through that pain and the associated osteo arthritis that has resulted.July 20, 2009 at 12:14 am #4979trevParticipant
Good to hear a good management story. There's no doubt that, whatever the worry and risk of long term medications, chronic damage to joints is the last thing anyone wants to grow old with.
In my mind, the issue of diet and UA needle growth & dispersal keep twanging something.
Both are long term events and hard to monitor.
I think diet is a large element but obscured from gout reactions by time and complexity.
Likewise the needles are very clever and can form again very easily after being 'digested'. The chemicals are still in the blood untill presumably eliminated by the liver -if the conditions are right!
Are they really eaten? I looked again at the sequence GP kindly put on site [linked above] and enhanced the last pic a bit and, on the last shot, the needle is still very much in evidence.
This is not to question the use of sequenced pics- I find them fascinating but this area of fundamental gout triggers and dispersals seems central to how the whole issue is managed, by the medical world using drug therapy, into an all too easy solution.
I have spoken to people on drugs therapy for gout and many still drink quite heavily and overeat despite the risks of masking a severe metabolic disorder.
It has already been acknowledged that UA levels are heavily involved positively in immune response capability and simply driving into a apparent safe zone [for gout prophylaxis ] is not enough, holistically speaking, for me.
I agree, it is a better place to be- for the chronic sufferer, so I am hoping for further research being done to really get this intrusive condition 'nailed', once and for all in a way that protects good health more fully.July 20, 2009 at 2:53 am #4980
Thanks for that, Glenn60. It’s nice to see someone getting good gout treatment.
Let’s hope that others are inspired by your story to seek early treatment to lower uric acid.
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