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Trev, I think the moral of that story is – never trust anyone else with your health (you only have one life & chances are they wont be thinking about you when they go home). For some people its easier to acquiesce & not rock the boat as the professional assumes all of the power (& knowledge), the patient becomes subordinate which is a vulnerable position & also it can be nice not to have to worry by trusting someone else with your difficult decisions.
Having worked in the NHS for a long time, my observation is that there are a minority of conscientious professionals with your interest at heart, some great caring people, but they are in the minority in my opinion. To do you homework (as I know you do & probably everyone else here) is empowering – at least with knowledge you can confidently challenge the Charlatans & it can be actually be lifesaving – I have experience of that in my own family.
All power to you – you're not on your own!
Hi Limpy – glad to hear you are doing ok too. Thanks for your good wishes. Hopefully you will be able to change your name from “limpy” soon to “limpynomore”
.It was really encouraging to hear your view of a reason for the long list of drug side effects – ie to cover the Pharmaceutical backs, I hope you are right. My hubby has knee twinges today but it isnt stopping him. He's quite tired due to working again I think as he hasnt worked for about 18 months until recently. His crutches seemed to be part of the furniture! It has been a great relief & surprise too that he hasn't suffered more during the 'dissolving' stage so far. He has taken Diclofenac a few times when he thought it might take a hold.
Although we are in England, it has for a while been becoming more of a litigation conscious Society. Its sad when people act defensively in the fear that you may sue them (as people are certainly more likely to do). Recently we notice posters up in our local Accident & Emergency encouraging people to contact them if they had had an accident – it was all I could do to stop my husband from ripping them off the walls! We have been since & they have actually been removed. I don't think we are quite as bad as America though.
All the best to you too!
Sorry Trev, I've got to ask, what is ULms (I'm sure you don't mean University of Lancaster Music Society)!
I think Stevens-Johnson Syndrome is a killer. An old lady I met showed me a photo of herself when she had the Syndrome following antibiotics – horrific photos! I read somewhere that it usually shows up within 7-14 days after starting the drug. If you have been taking Allopurinol longer than that, then I guess you are reasonably safe from that side effect.
http://stroke.ahajournals.org/…..39/12/3303
Another pilot:
http://www.stroke.org.uk/resea…..o_inv.html
Probably the most relevant:
http://www.medscape.com/viewar…..e/472684_3
The latter is probably more interesting & has some references to other studies if time allows.
I suppose that it could be worth asking for checks from time to time on your kidney & liver function & for a full blood count (at least annually). Also to be fast to respond to skin rash with Allopurinol usage. Must admit the list of side effects is awful (as with most drugs) but most people don't get them – but some do! I suppose its a calculated gamble at the end of the day. For us, although difficult, we had to do something – an MRI showed 9 small ministrokes of which my husband had been unaware all but the last couple. He functions well & loves life & it was clear that he was on a downward path if it continued. His UA is around 4-5 now, has been down to 3 on a low -protein day (taking 300mgs Allop). Interestingly, he noticed that the night and morning readings are closer to each other now so seems to be more stable.
I respect your reservations re taking drugs 100%.
Not heard of the Higher Nature supplement you mentioned Trev. We do have some of their products though. He is trying to follow the regime from our Nutritionalist. She is very careful not to overdose & does her homework (not that I trust any one 100%!). The antioxidants she suggested (apart from Cherry Active concentrate) are:
Solgar Nutri Nano CoQ10 50 caps £26.54
Thorne R-Lipoic acid x60 £25.51
Higher Nature Supergar (garlic) 8000 x 90 (1 tab daily)
(Plus the Biocare VascularGaurd as mentioned before ). We don't have endless funds either but he is back at work again as he likes to work (not every week) & I am in the process of going back also which should help to fund the habit!
I notice one of the ingredients in the supplement you mention is oregano. I don't know if you have room but it too is very easy to grow. I sprinkled some seeds in a large basket in a very good growing medium (always use org pelleted chick manure too) & it did brilliantly, I wash & chop it into pasta & various things. I meant to dry some but never got around to it, it is flowering now & so the leaves are not as good. It should come up again next year.
Turmeric is quite nice in rice (with crushed cardamon seeds) but may not be a therapeutic dose.
The hypothetical stats you mention are interesting. Chances are you WONT be THE one, but you could be (& somebody will be)! Always difficult but I think on balance, knowing the potential risks of long term raised uric acid, its a gamble that has to be seriously considered, because its also a gamble to do nothing. I agree with you that all drugs have some undesired effect. I wonder what it is about Allop that can actually cause death (even if it is fairly rare)? That was the reason I never encouraged my hub to take it before, even though not actively discouraging him. When you start to have brain lesions though, or effects of cardiovascular disease, its scary (not to mention the suffering of painful & messed up joints & the unpredictable inconvenience).
BTW When I mentioned blackberries I meant black currants (stability re freezing well etc.) I really don't want blackberries in the garden but we are about to pick them again to freeze from park! Hub has just raided a wild cherry tree too!
Sorry to be off topic, had just meant to report back but tis important though. Diet is sooooo important to health & prevention of disease – no good without exercise & if have ongoing stress – now there is another topic!!! Stress really is a killer!
All the best Trev & to all who are seeking to following this tricky path to health.
Trev, We have 4 blueberry bushes in large tubs (ericaceous compost mixed with soil & pelleted organic chicken manure & fed with org. seaweed feed). They ripen at different times so enough for a handful everyday. Did buy more when out of season during the constant gout attacks. Also collect blackberries & freeze from a park that very few people seem to have found!) Cherries we buy from a cheaper seller on the town High Street & freeze some. We do buy from local farm shop too – expensive though. Blackberries are easy to grow in the garden but had to pull ours out couple of years ago & didn't replace it. Makes it much cheaper if you want lots (I believe nutrients in blackberries are quite stable when frozen). We also have some black soy beans growing at the allotment but probably too late in the season, just an experiment!!
So ya see, can be done if can afford the initial outlay & the time & effort. Nothing fresh in winter though.Trev, sorry about that, didnt realise so expensive. Ours were from Natural Dispensary for £15.31 for 30 and were further discounted by using our Nutritionalist's code as she passes on her discount directly to her patients. It adds up when you are taking more than one supplement doesn't it. A lot can be achieved from just eating a healthy diet as you know.
Trev, Just one more comment, as I know you have the BP problem. Hibiscus tea has been recommended for hypertension (3-5 cups a day):-
auravita.com
Don't know how effective it really is but my hubby has a couple of cups a day & says it takes surprisingly ok! His blood pressure has returned to text book, but may be due to being more active again?
Also along with the omega 3's etc there is a product called “VascularGuard” naturaldispensary.co.uk. Of course there will be trillions of supplements just waiting!
Thats interesting Trev. Seems to me doctors really don't know a lot about very much unless they have a particular interest. Gout has been around for a while so really there is no excuse, there is research available. I think the medical profession is swamped by too many sick folk & so they have literally a few minutes to reach for “the Pad” and encourage them to leave, as our Nutritionalist says “a pill for an ill”.
In response Trev I thought you might find this article interesting. Its about microcirculation & in particular thought it might be helpful re Nattokinase. My hubby takes it now instead of Aspirin as aspirin competes with uric acid for excretion, it caused gout, but I think it depends on the dose. I believe aspirin only works for about two years anyway. He takes the omega 3, as I know you do too (vitamin E is also helpful). Still keeping up the anthocyanins by eating lots of cherries, bluberries, blackberries etc.
http://www.vrp.com/articles.as…..mp;zTYPE=2
We have persuaded my husbands “stroke doctor” to let us have blood test for clotting time after being on it for a few weeks just to be on the safe side.
All the best.
Yes, thanks folks. It has been a great support to be able to air concerns & gather lots of very good & sensible advice. It empowered us to go ahead having been able to consider all options. Using the uric acid meter also helped (which we had never heard about – nor has his GP) it gave us good information about the effects of certain foods & also to monitor the effects of the Allopurinol. Its good to feel more in control.
He has been gathering uric acid crystals for at least 45 years that we know of so I it is a great relief to be able to take Allopurinol without any major hiccoughs at all so far. Has been taking it for about 4 months now. His knees are feeling much better & really nothing will stop him now – very active! This has been the best support forum I know of so thankyou very much and especially to Goutpal of course – thanks Keith.
If I could pass on any advice now, apart from learning about gout from this group, then it is – be careful not to ignore the uric acid level because the gout is infrequent. You may avoid damage to the cardiovascular system to get it to a normal level, by whatever means necessary. Personally I hate the thought of drugs but there is a time when it is necessary. By sticking around long enough here we learnt loads & gained confidence to do what was best in our circumstances – it has lead to improvement in quality of life & also may in fact be a life saver.
Bye folks – we wish you all health & freedom from the distress of this wretched illness. God bless.
Lovely pictures! Googled “Wang black soja bean” and emailed supplier in China. Just couldn't resist! Thanks Dp14
Hi Charles,
My husband started with gout when he was 22, his father also had it. He ignored it as much as poss. Tried the medications on & off but did not persist because of the associated gout flairs & a really nasty reaction to one drug. No one had taken the trouble to explain to him the consequences of ignoring the gout. I think doctors underestimate the cardiovascular problems that it can cause – just tend to treat the presenting problem, as I think Goutpal has alluded to, ie pain.
Since using the Arctic Medical's monitor recently, he has realised the effects of a lower protein diet – makes an incredible difference, although not enough at this late stage. He is now 67. Would definately recommend the monitor – at least gives some control & knowledge of progress.
Good that it was picked up early. Potentially have a long and healthy life ahead of you.
Hi Metamorph,
Thanks – I do my best!
Well you see Metamorph, I realised the genuine BLACKSOYABEANS can MORPH………
I.e:-
BACON, BASS, & ALE!! (that equates to meat, fish & beer) where else can a goutie legitimately swollow those without ill-effect?!
Ok, I know, it leaves YK free…. must be a use for those.I will leave someone else to discover the morphic abilities of the common back turtle bean, but would be difficult to beat.
Hi Me Ta Morph,
Thanks for those links… no success though, at least, not yet.
Tried links from Twenga (Community Foods, Good Foods, Mungodeli, Wai Yee Hong)
I rang several stores. Wai Yee Hong is a supermarket in Bristol. The assistant went to look & reported that they have the black soy beans. She was a bit vague so I asked if I could order just a bag to see if it was the actual thing. She said only online – of course they are not available on line at all – they don't accept payment over the phone either. She suggested I came into the shop – (a few hours distance probably a 6 hour round trip). I really suspect they are the Turtle (which I can get 10 minutes away)! Still if I can incorporate it into a holiday I will!
Eden Foods are in America – it looks like they don't export to UK s only choice of Canada, Puerto Rica & United States for address at check out. I have emailed them though to see if I can persuade them
Wheatgrasskits – they sell on the Amazon in United States, again come to check out, wont allow. Previously emailed them & they were really sorry they were not allowed to export to UK because they are classified as a “seed”. I suppose it is a UK law to prevent virus/diseases being imported. I think it is seen more as animal food. I guess that is why I am finding it impossible to find.
I haven't given quite given up yet….. not sure though what to try yet – don't really feel like a trip to China/Mexico at mo.As for Hub & his turtle beans – he is not objecting – infact he even said it was worth having gout to drink a nightcap of BBB with garlic & ginger in it!
I think it does help but its hard to say how much. He is also eating tons of blueberries, black grapes, cherries, purple cabbage & all things purple. He is also having Diclofenac once or twice a day. He says though, in the past Diclofenac would never hae actually stopped a full-blown attack. He seems to be suffering a subacute attack, not quite developing, stats to improve, comes back, now sarting in other ankle.
Would say yes, it is helping – because of the article I read about the Delphinidin (not sure I spet that correctly) being MUCH higher in the black soybean, I am stuck with the idea that it could well be even more effective. We need something other than Diclofenac to deal with the inflammation.
He is also taking Omax as recommended by Trev (seems like a good Omega 3) suppliment – proven to help arthritis at least.
Have bought up the last bags of Turtle beans from Sainsbury's – normally would leave one behind, but as there were only 3 & it was for valid altruistic reasons……!
Hi dp14,
As I understand it, BBB probably wont reduce your UA readings, hope I'm wrong though. My understanding is that it is the anti-inflammatory effect that stops the gout “setting in”.
Presuming you do not live in the UK as cant find black soybeans anywhere. Not given up though.
One last shout….. REWARD (TO GOUTPAL OF COURSE!) IF ANYONE OUT THERE CAN GIVE ME INFORMATION WHICH LEADS TO THE CAPTURE OF THE ELUSIVE BLACK SOY BEAN – DEAD OR ALIVE.
Hi Utubelite,
Thanks to you too for great advice & confirmation re not waiting for a gout free time before commencing Allop. (Sorry Trev – think we gotta go that way
). Hoping that if he tolerates it & that it actually does the job, that he may be able to control with a low dose. Thankfully we have the UA monitor which is a great help.Nice thought to think it might actually stop an attack in its tracks – speculating now!
Zip – thanks for advice – I like your straight no John Bull approach. Confirmed what I suspected (thanks to being educated via goutpal) re dangerous UA levels – will have to wait until doc back in a few days time though. Meanwhile think he should take your advice to Hansinnm re stopping ALL fish, meat until then (as I cant persuade him to eat more now!). Only a few days but may satisfy curiosity later to see what diff it makes to his UA readings. He has come to the same conclusion re “biting the bullet”.
Trev – thanks for info re fish skin, I wonder if purines are higher in the fish oil too in that it seems to be oily fish that are the worst culprits.
He does eat lettuce but I cut it down a bit after reading something abut lettuce being bad for something – unfortunately though I can't remember what! I am not yet sure what the merits of an alkalising diet are – I will do a bit more reading.
Thanks for reminder about not over doing it following steroids (or other analgesia) – good point, tend to forget when pain is improved that still not fully recovered as masking.
You were taking a risk with a full bottle of wine. That would be a huge benefit of taking Allop for H! I bought him a vaccum suction pump thing recently so that he could just have a glass or two & the rest of the bottle would be ok for a while – hasn't use it, gone completely T- total. never thought I would see the day!
Hi Phofab, nice to see you around again!
Thanks for your considered advice.
My hub could not remember the name of the drug that caused the reaction years ago. I presumed it would probably be Allop, the rheumy proff wasn't interested – just take it or leave it. His GP however said it was more likely to have been the colchicine, which does make sense. It wasn't the side effects people here have mentioned though. He literally only took one, no sickness or diarrheoa. He said that he just felt like he had been poisoned and was literally dying. Obviously he was wrong as he didn't! He is not normally prone to allergies or etc. Anyway, I asked if they could try and retrieve his old records & see if the drug was recorded, they are trying. He apparently didn't frequent the docs very often so shouldn't be too much to read through even though it was 35-40 years ago. Hopefully we will soon know.
I suspect you have something about increased physical activity, hub had recently started going to the gym & even though I suggested he took it easy following gout attacks he still didn't reappear for a couple of hours! In fact he is still waiting to get back, saying he will just “do” the 'top' half!
The reason the doc gave previously for not wanting H to start on Allop during an attack of gout was that it would probably prolong it. I didn't understand the mechanics of this and so just accepted it. It is reassuring to me to read yours & Zips comments on just getting on with it in that waiting for a “gap” is not vital. I think to encourage a gap he would have to deliberately eat more protein foods again for a short time to prevent dissolving UA. That on the other hand doesn't seem sensible if it makes no difference whether UA is lowered naturally via diet, or by drugs.
The doc has gone on hols for a week & wants to see him in 6 days. She plans to inject his knee again with steroids if it hasn't settled & then start Allop. We are now both of the opinion however that it would be better to save steroids for a crisis, ie if he gets another agonising bout that seriously immobilises him for a long period.
Personally I found your post very reassuring & confirmed what I had been thinking but was unsure of. Also it nice to know we are not on our own. Really helpful to hear of other people's experiences. I would love to hear that your toe tophi clears up ….. if effort & perseverance counted than I don't know how it dare hang on!
I was under the impression that meat was worse than fish as far as triggering gout. I have taken Trev's advice though and remove skin from fish.
H eats all of the things you mentioned although hasn't had beetroot for a while.
He has the idea that a poultice of some sort may help – personally I doubt it would as he doesn't have tophi. He had a couple of soft lumps over joints recently that disappeared completely in days – no idea what they were, suspect they were gout related though.
Anyway Phofab – look after those chucks down-under & all the best to you.
Thanks phofab & Trev – just perused your posts. Have to rush out now but will inwardly digest & come back later today. Much appreciated.
First, I am not a gout sufferer – my husband is. We have had a lot of kind & helpful advice here & have learnt a lot from GP's info & other's experience.
I would like to do my bit & advise you here! This is any easy one for me now, having made the same mistakes in life myself & seeing my hubby the day after “over-doing it”.
1) Weight bearing on inflammed joints will aggravate it at best & possibly cause chronic damage & possibly incapacity at worst.
2) Although you may feel really bad about not turning into work – in years to come, or sooner, you will wish you had looked after yourself.
3) People may feel irritated that you aren't coming in, but they will have moved on & forgotten you while you are still paying for it!
4) No matter what inconvenience your absence will cause both colleagues & clients, life will go on & it will only be a quickly forgotten hiccough to them.
Obviously you don't want to loose your job but it sounds as though you are able to take time off. Would it help to discuss with your employer your current situation & reassure them that you are taking steps to control the gout?
My husband tends to start moving a little bit too soon & is predictably worse again the next day. At last he is beginning to learn
. Its good health-wise to move the others joints if you can to reduce problems of immobility eg, thrombosis, muscle wastage, reduction in stamina etc – eg sit ups, arm weights without going mad! It also keeps your heart/ circulation/immune system in good condition. I know, I've never personally had gout & it must be hard to move part of your body whilst keeping another bit absoloutley still!Believe me, I have personal experience here! Turned into work half dead until collapsed – & then went back for more – its just not worth it – & that is in the “caring” profession NHS!
Is kombucha a fermented product? If so could kefir cause the same reaction as this too works by fermentation? We have been using this for a few weeks, usually in dried milk as it is claimed to help implant “friendly” bacteria into the gut &is also apparently rich in B vitamins. Does Kombucha work in the same way?
Somewhere on this site I read, ( I think Zip2play) that kefir may help with the breakdown of uric acid, albeit only a little, reducing the amount available for reabsorption.
Hi Trev!
Found the antidote!!
http://www.britannica.com/bps/…..d-Pressure
I'm certainly giving it ago, this tendency to hypertension in gout suffers also transfers to the closest family member by osmosis!
Sorry about the diversion to pH strips – initially was an observation of alkaline urine after BBB. BBB may be good on at least two fronts if that is the case.
Would love to find those elusive black soybeans though!
Thanks for info on peeing uric acid, although it lost me a bit, esp the chemistry!
FYI Trev – he really does drink like a fish now – H2O! Strange thing is, alcohol used to drop his BP suddenly into his boots, never did understand why, supposed to put it up, may be allergic to it.
Trev,
Will keep up the BBB & monitor pH urine. Can't stop him drinking now despite the higher BP – says he prefers that to high UA (we disagree there!).
BTW do you really think you can pee out 200mg uric acid a day? Do you remember where Zip's rough assessment is? H cant understand (or me) how you can have an alkaline urine whislt excreting uric acid.
Has definately been on a much lower protein diet, I know that can give a higher pH urine but even after fish, with the small BBB it was more alkaline afterwards. Uric acid reading this morning lowest ever at 6 (fasting) so that was encouraging but early days. Just not happy about that BP – diastolic 94.
Jim,
Are you sure you cant get those pH strips from Amazon online? They ship all over the world. Hopefully you managed to find them at you local pharmacist. The ones we have range from 4.5 to 9 over 14 increments. I am envious of your weather, really envious! Even the monsoon sounds good – bet its steaming!
I don't suspect BBB as the cause of increased blood pressure after the “eurika” moment (toooo much water!)
I do think BBB may possibly have quite a powerful effect on the alkalinity of urine. This could be especially useful when starting on Allopurinol & crystals start to dissolve – possibly discouraging urate kidney stones (not to mention any antiinflammatory effect).
Same effect noticed today pH 6.5 before a meal including small amount of fish, ye, the fish(no batter), chips (oven!) & mushy peas!. Ended with only half a dose of BBB & pH 7.25 4+ hours later.
Did substitute BBB with blueberries & black grapes!
Would be interesting to hear if anyone else notices the change in urine pH with BBB.
I think H is begonning to feel like the guinea pig!
Morning Jim!
He doesn't find the BBB awful at all, quite tolerable, but not the drink of choice. One cup is easy, but prefers it as a soup and it helps not to be pushing things all day long rather than incorporating it into the “normal” diet. Really can't complain if you compare it to the drugs for TB (apparently diabolical!).
Agree on the apple cider vinegar & soda bicarb.
We recently purchased “energise pH Test Strips” from Amazon uk. They are for testing Saliva & urine. There several makes on the market. He has started tesing urine occasionally – was always around acid 6.5 so 7 is hopefully good. You just wee on the strip & check result against a colour guide after 15 seconds. I like this type as easy to match as it has a double colour match (2 small squares.
We also bought “Mission Urinalysis Reagent Strips”. These indicate whether blood, protein, ketones & glucose present and also has the pH included. Best to wee into a small container & dip into this I think – 60 second wait. I doubt either of these have anything to do with how much UA is in the urine though – may show less likely to develop urate kidney stones if pH alkaline.
An observation, a recipe, a worry!
Hi Metamorph – have fed BBB to hub last couple of days to as one of his meals to try & help damp down the inflammation in his joints & apparently tendons. Made it into a soup ie carrots, celery (& seeds), ginger, garlic, parsnip, red onion, fennel fonds(!), sweated in olive oil & then added BBB Herbes De Provence & oregano. Looked nice & he enjoyed it with a bread roll (50:50 spelt:white flour using Baking powder rather than yeast). Ate a few walnuts for protein.
Tested urine for alkalinity – 7.0! So seemed to have an alkalising effect. He did have small amount of fish earlier at lunchtime & lots of fruit. Have been testing PH of urine & has always been around 6.5 so this was good to see.
Worry however is, his BP has gone up 10 points on the systolic & the diastolic last couple of days- this is out of character, wont blame the broth just yet. Maybe its this “Boot Camp” that is stressing him out!
